OCTOBER - DECEMBER 1996
9/19/96 - The intent of this narration is for tracking purposes only and to keep an account of how things are now and how they are later -- not to call attention to or point out Jack deficiencies or frailties. At times during this text, my mood and anxieties may appear to be otherwise.
When Jack was diagnosed, it was referred to as a depression, and although secretly I disagreed with the diagnosis, inwardly I prayed that the doctors were right. I saw things and heard things that did not fit into a "depressed state" such as I knew it, but did not want to believe what I feared. So therefore, I did not give in to my fears nor would I to allow it occupy my mind. Therefore, I went along with the those who pooh-poohed my concerns, finding it simpler to qualify odd behavior with "we all forget things" and say things "off the wall". And you can usually qualify your own inadequicies by saying that "your mind is ahead of your mouth" or some other such inane explanation -- itís part of the aging process and you compromise. To admit that someone within your age bracket may be impaired would also be an admission that it may happen to you as well, and thatís harder to accept. But in retrospect, I can see when it began to become alarming and was not to be explained away as simply an "aging process".
Now I see the enormity of a demon I have no control over. I can simply hope that what is, will not accelerate. While the adoption of that attitude may seem to make excuses, it is intended solely to record events and situations and to keep a chronological log of progress, regression or status quo. At the same time, however, it will serve as an outlet for my own serenity and strengthen my patience which sometimes runs short. I have not been prepared either spiritually, professionally, nor by fortitude for the situations that I am encountering each day and each hour. Some of these notes are frightening to me -- others tear my heart out when I realize how fragile his mind is. Ironically, I am convinced more than ever that no one knows Jack more deeply than I -- not his children nor even his doctor, Dr. Cohen, who I felt knew Jackís condition better than anyone since he was the one who brought him through his muscular illness - polymyalgia rheumatica - five (5) years ago.
When within a group or with another party, I catch myself explaining Jackís inability to comprehend, and now to perform simple tasks, reply fluently or assemble instructions given.. I have a penchant to compensate for him somehow, either for my own pride or his - I donít know that yet. Nor do I know if I should or not. I seem to want to jump right in and solve whatís not happening and I donít know if I should do that, either. Thatís not known yet either. In the text below, I will attempt to explain the circumstance that prompts Jackís lack comprehension. Not only do I know my husband better than anyone else, I also now know what he MEANS (his intended answer) rather than what he says. I was somewhat amazed at that realization -- that I now KNOW this - that his reply would be not what he meant, but completely the opposite would be uttered. It seemed as though the brain knew what to say, but it became jumbled before it reached the lips The oddest part, too, was that he did not seem to be aware of what came out -- only that it was out, right or wrong, and even though it was not what he wanted to say.. Now here, there is good news and bad news.....The good news is that the revelation of this new found information somehow made it easier for me to second guess his reply and therefore, help him. If that helps him. Jack appears to be somewhat pleased (there is a little smile although the eyes are staring without emotion) if I jump in and solve the situation at hand. The bad news is that I was beginning to accept his newer withdrawn and comatose personality, replacing the hope that somehow, some time, he would get better, or better yet, eventually a miracle medication to erase the ghost in my husbandís personality.
The initial realization that something was really "not right" came to light when his co-workers frequently complained to me about Jackís angry personality of late. He was pissed off at "this one" and "that one" without any apparent incident or reasoning. Keeping in mind that we all have very stressful jobs at The Authority and that we do not always have ideal situations nor solutions, my reply to their complaints was that "it must be the job because I donít see any of it (anger) at home". In all honesty, I truly did not feel I was making excuses for him nor did I deny that what they told me was less than the facts. We all had to deal with our problems individually and sometime that meant taking a bite of someone elseís armor. At the time, I did not relate this "anger" I was hearing about to anything else. However, in retrospect, I remember reading an article in the St. Pete Times written by an AD sufferer who was in the early stages named Tim Brennan and who was also a Times reporter. He said that anger expression was one of the first symptoms of AD. Now why did that particular article stick with me and able to call that essential?
I, on the other hand, first began noticing Jackís odd replies to basic questions, being neither relevant nor complete. He also seems to lose his language fluency, starting a sentence and purportedly lose his train of thought and stop right in the middle of the sentence and fail to complete it. Heíll stare off into space as though he hadnít said a word. Meanwhile, youíd prompt him with "what?" and he would not reply -- only stare at you wondering what you want. A second "what did you say" would elicit no response.
Although I have talked briefly to some friends and family, I have made my friend, Terry Fields, who moved from next door nearly two (2) years ago, my confidant. This gal is a gutsy individual and calls a spade a spade and I have the utmost respect for this gal who has accomplished so much in her short life. I guess I need someone to tell me what to do. I miss having Jack as head of the house and making all the decisions. It was Terry that told me that when she lived next door to us two years ago (she moved in February 1994) that she noticed the differences in Jack before she moved.
He calls Inez (neighbor across the street) by the name of Anita. Anita lived there 7 years ago.
Recently, when he called Paul (son), Keith answered. When Keith asked who it was, Jackís speech faltered and he struggled to answer "This is Paul McElroyís father", rather than saying, "This is Grandpa". It appears that Jack has lost not only speech fluency but the ability to organize his thoughts -- (is that perspective or perception?).
Jack appears withdrawn and will not engage in conversation, either with me or in a group. He just sits there and smiles. If heís asked a question, he will look at me. This is what I mean when I say I wonder if I should answer for him. Does he expect me to? Sometimes, I just say nothing, just to see if he will -- maybe Iím jumping in too soon? I noticed that when he runs the water to get a drink or wash his hands, he will walk off and leave the water running. This is only sporadic, and not always the norm. He has lost his way several times. On one given day at the SPHA, I was on the switchboard and he had not shown up at a scheduled inspection in the AM and also one in the PM. He later told me that he had gotten lost. Another time as we were entering 49th Street N from US 19, he turned left. Not wanting to second guess him (he may want to go another way home!) I first said nothing, but when we came to Ulmerton Road, I asked where he was heading and he said "home". I told him that if he wanted to go home, he needed to make a right and get in the turn lane. He said "no, weíll go this way". I said if he continued on 49th Street he would run into the Bayside Bridge and go to Clearwater -- is that what he wanted?
He replied "I want to go to Walgreenís on Roosevelt (which we had discussed earlier)". I repeated the directions. He refused. We had to get off the bridge later and turn around.
While I was ironing, the extension cord shorted. I got another. Jack who always was a great and willing "fixer of things" also went and got an extension cord. Although I didnít need two, I said nothing and let him plug it in. He first looked at the female end of the plug and also looked at the female end of the plug I already had, he said it would not work. I said "thatís OK - I donít need one now". He put it away. He could not figure out the male end and the female end by looking at it. I was stunned.
Although he complains to the doctor that he cannot sleep, J. is not lacking in the quantity of sleep. J. is napping in his chair by 10:30/11:00 a.m. for about 1 - 1Ĺ hours and again in the p.m. for an equal amount of time at least or more. He then says he canít sleep at night more than 4 hours, which is why has taken his evening sleep on the couch in the living room (for about 5 months now). He claims I keep him awake.
J. tells everyone he has a heart condition. When I questioned Dr. Dawson about it, he said he had an accelerated heart rhythm at last physical and not to be concerned. He takes no medication for this nor has he been cautioned about his diet or routine. However, to ease my mind, Dr. Dawson ordered a EKG and a chest x-ray. The results indicated that there is no evidence to suggest any irregularity in his heart nor did the chest x-ray reveal any indication why J. has difficulty in getting his breath. Suspect is that he is hyperventilating when he becomes anxious and unsure of any given situation.
When filling out a medical questionnaire, he asked me the date. I replied, "June 6". He wrote 7/6 and then he asked what the year was. I replied, "1996". When Dr. Cohen questioned J. about his memory, J. said that he couldnít recall the date when filling out the questionnaire. Dr. Cohen said "But did you remember it later?" Jack said emphatically, "Oh yes!" He didnít - I had to tell him.
When asked by Dr. Cohen if he ever had problems with alcohol or drugs, J. replied "No". When asked if he were ever called "Jack", he replied "No, never." Dr. Cohen repeated the question about the name, he reiterated No.
When we were at the veterinarian Dr. McLemoreís, Jack told Dr. McLemore that he never had a knee operation.
J. does a lot of sighing and panting as though losing his breath. Dr. Dawson said that this is one symptom of clinical depression.
J. also continually has a "humph" - noise of disgust. Says he doesnít do it.
J. frequently substitutes one word that he thinks has a like meaning. He reminds me of Norm Crosby, the comedian whose deliberately murders the English language.
Big controversy about trip and going to Paulís. First he told John we were going and then told David we were not going. But he did tell Paul he was coming to see him. J. told John we would be at his house the 1st of July. (We had planned to leave on the 15th of July). J. said he called Charlotte twice to tell her we were coming. He didnít call her at all. She was cross with him, but he was noncommittal. He really felt that he did call her and insisted he had called her twice. In addition, he had his suitcase packed 3 weeks ahead. Thought each Saturday we were leaving.
J. becomes confused and disoriented when faced with using technical equipment, i.e., phone (got the touch phone) J. says he can only program the VCR that is in the repair shop. The VCR was in the shop 6-7 months ago and is now back in the same place when he used to program it each morning. J. will not use his ATM debit card in the gas pump. Says it doesnít work
J. has lost his ability to spell (now spells phonetically) and do simple mathematical equations. Spells Meadows "Meedos". Added two numbers OK, but more than two may result in carrying a figure and thatís when he regresses.
When J. asks if you want to watch a certain program at a specified time, he will turn the channel right away, without waiting for the present program to end.
J. has trouble remembering days -- not just dates. Example: J. had put out the rubbish barrel on Tuesday night for the next dayís pickup which would have been Wednesday. Our pickups are on Tuesday and Friday.. But he had forgotten that he had put out the barrel that very morning for Tuesday pickup -- only a scant 9 hours earlier..
∑ Forgetful - forgets wallet 4 out of 5 times. Here again, I remind him "have you got your wallet?". Should I? When reminded about wallet, he get stressed or challenged, starts blowing or breathing fast very audibly. Now I just check for the bulge in the back pocket.
∑ 7/4/96 - Got a glass of water and walked away and left water running. While we were on trip I was attempting to keep a mileage record. When I would ask him the mileage, he would only read first 3 numbers and when asked, deny that there were further numbers. J. becomes irritated when questioned. Should I? I donít know the answer to that yet. Hope I find out soon.
∑ Has no conception of money or value. I only realized this recently. I first thought that he was spending loosely and I didnít want to nag, but I realized that the whole business in buying the Plymouth was exactly that -- no perception nor value of money is evident. He doesnít seem to be aware that we are living on $1000. less per month and when I mention changes in our lifestyle, he becomes vague and starts "blowing".
∑ 9/19/96 - Barry Robbins, audiologist, gave a test to J. in order to program his new hearing aids. Mr.Robbins gave a gauge to J. and told him to press the button that most described the sound he would hear through ear phones. The gauge resembled a remote control device and had six buttons, ranging from the top -
†††††††† Too loud
†††† † Comfort
†††† † Very Soft
†††† † Cannot hear
J. was told he neednít reply aloud, simply press the appropriate button. When J. heard the sound, he said "very soft" and pressed "Too Loud". Another example of meaning one thing and saying another. I thought, OH GREAT! The hearing aids will be programmed wrong. I offered to assist and we got through it. J. simply did not comprehend. J. seems to revert to a grade school level and the idea of taking a test -- you must do your best on it. J. seems to want to please Barry Robbins and give him the right answers. J. simply did not comprehend the process of programming the computer for the hearing aids. It was beyond him. Got stressed and started blowing and breathing fast..... When the aids were programmed, Barry Robbins suggested a walk outside to test J.ís level of hearing with the aids -- in traffic, in various normal outdoor noises, and next to a gushing outdoor fountain. J. reported that he could hear perfectly and in addition, the "locusts" were gone.
9/19/96 - J. is having difficulty placing the aids in his ear. When I looked at him, the aids had the appearance of small wings protruding from his ear. J. seems to place the earpiece over the ear, and then twists it so he places the aid either upside down or backwards. J. complained that the aids were screeching and I deducted that it was because they were not seated correctly. I called Barry Robbins in an effort to determine if he has any handy-dandy "tips" for insertion. When I got them seated correctly (I think!) I asked if he still heard the screeching noise. He said "I donít know". I lost my patience and said "give me a yes or no". He said "no".
When we are seated in a restaurant and additional coffee is offered, his answer never varies -- it is always "no". I know he doesnít mean this because until the meal is finished, he will always opt for the second or third cup (do I know my husband or what?). Additionally, he will have his cup up, poised to be served! But I give him the option to speak first. If the answer is "no" (and it always is) I will reply (giving the impression to the waitress that perhaps he didnít hear) "did you want † more?". He invariably will smile at the waitress and hold his cup toward her, obviously indicating "yes". I mention this trivial piece of data only to reiterate that what he says is not what he means, but he appears to be oblivious to what he is saying.
I have accepted a temporary part-time position as an Admin. Asst. to the Regional Director (Bob Hume) of the Amoco Split Second Corporation. So that J. would know where I am, I took him to the office complex. He later told his sister, Charlotte, that I was working in a gas station. Although the Split Section Corporation do have car washes at their stations, I would have to assume that Jack made an association, but not the correct one, since I work in the Executive offices.
9/24/96 - J. is still unable to insert the hearing aids properly. This has been a trying experience. When he does not have them in, he will say he forgot. And when he does put them in, they are upside down. Trying to give him a visual insertion guide, he forgets each time. I ask him if he hears OK that way, he says "yes:" but I notice he has the TV real loud. His appointment with Barry Robbins is on 10/2/96 next week, so I am hoping that he can set him straight. A call to Mr. Robbins confirmed my understanding of the proper installation - that the flat cup part fits in the lower part of the ear above the lobe. My question will be is there a left or a right ear piece (?).
J. seems to appear stressed and anxious and starts the blowing process and I know enough to back off the subject and try again - later.
9/25/96 - Went to Snell Isle Market to pick up some steaks. When I asked J. if we needed to get milk, he said "no, we have plenty". After we paid for our groceries, he went and got a half gallon of milk, and said "I told you to get milk". He had his hearing aids in. Whenever a situation like this happens, it seems as though my first question seems to trigger his action, him being unaware of my question or statement. In the past when this first started to occur frequently, I would ask him if he heard me. (this is when I thought some of the problem was his hearing, but his reaction would be hold his head with both hands (as though it hurt) and become anxious, and start to breathe and blow rapidly. Now I donít ask -- just accept.
9/28/96 - When making a statement or something that requires an answer, whether is be "yuh" or whatever, it appears as though he does not hear, therefore does not respond or answer. Venturing a guess and observing, he seems as though he can only concentrate on one thing at a time and if he is doing something (or thinking something) he just tunes everything else out. I know he hears because he is wearing his aids more now and I note that the TV is at a normal hearing level. If you repeat your question, he invariably will say "no" before you finish, whether or not that is a relevant answer. That tells me that he did know you spoke, but is unable to respond fluently, and just wants the questions to go away.
9/29/96 -Sunday: Jack complained "The St. Pete Times sent us the Sunday edition of the paper - AGAIN!" When I said "Well, itís Sunday - whatís the matter?" He just sighed, started blowing fast and just held his head with both hands.
10/8/96 - Tropical Storm Josephine hit today. We had about a foot of water in the house. Jack. thought it was great fun just as though a child would relish something like this.. When asked if the kitties were in, he said "no - they are gone". "Gone? Gone where". He said, "I donít know". Only a few minutes later, one of the kitties appeared and I said "oh, here is K.C.". Jack. said "I let her in yesterday".
Although we in Florida did not expect a direct hit, we always have a flooding problem when the storm gets into the Gulf of Mexico. When J. heard this, he wanted us to go to McDonaldís to fare out the storm. Because during the 1986 Elena flood, we did spend the day in our van in the parking lot next McDonaldís. I think familiarity is what he is most comfortable with and I believe this is why he wanted to go there. However, in this instance, I refused to go. I always thought that our retreat in 1986 was not the best idea, but during those saner days, Jack. always made the decisions. I now have to assume that role and itís very difficult for me to confront J. and counter his actions.
October 10, 1996 - I couldnít locate the city rubbish barrel and asked J. where it was. He said "I donít know". Later I saw our next door neighborís (Mike) out by the street and remarked to J. that Mike had his barrel out early. J. replied "thatís our barrel - I put it there for pickup today". He got angry and said "today is Tuesday, you know!", when in fact, today is Thursday. I said to leave it out anyway, because tomorrow is Friday, anyway. He got real irritated and yelled at me and said "TODAY IS TUESDAY, YOU STUPID BITCH". This is not Jack. He has never called me a name.
Because of the storm, this will be a zoo, contracting for services and most importantly, a general contractor, since we will have to replace our walls. I hope Jack doesnít interfere and mess up the procedures we are to follow for the flood insurance program. I told him to call me if he needs to make a decision.
I called several contractors (2) who, because of this storm, were busy and not in the office and would return my call. When they did on Oct. 14, 1996, Jack told them they needed to call back, even though I had already explained that if they did return my call, to schedule an appt. for after 2:15 p.m. any day.
10/11/96 - Had to go to the bank to get to our safety deposit box. At the end of the road, he asked if we had to go over the Howard Franklin Bridge (even though I told him where we were going). Jack. didnít understand the term of safety deposit box nor was he cognizant of where we were going, although he should have been.
10/12/96 - Adjuster Jim Childs of the Special Disaster Team for State Farm visited us for an inspection. When Mr. Childs remarked that he was from Connecticut, Jack. said "oh, my sister is from there." When questioned "where?", J. said "East Haven" when, in fact, his sister Lil is from Hampton, New Hampshire. I believe Jack. was attempting to make an association between Hampton and our experiences on our trip going through East Haven CT, after we left Lilís home. When Mr. Childs was in our living room, he asked if this was our family room, Jack. said , "yes". I countered back "this is our living room", so Mr. Childs would not assume that we had another room. The majority of homes in Florida have a family room plus a living room. Jack. also told Mr. Childs he had built this house. I believe he meant to say that he had constructed the built-ins within the house. Additionally, when Mr. Childs was in the utility room, Jack. said he had built raised platforms for the washer, dryer and the dishwasher (he was pointing to the water heater). Mr. Childs questioned, "where is the dishwasher" and started for the kitchen. I pointed out that J. meant the water heater and that we do not have a dishwasher. Jack. then told Mr. Childs and the entire house was sheetrock, when, in fact, it is plastered, although Jack. has previously boasted that the house was plastered. In a case like this, I became anxious since this was Mr. Childís first visit here and we were attempting to file a claim. I was concerned that Mr. Childs may think we were trying to pull a fast one!
10/14/96 - While on the elevator leaving the Suncoast Medical Clinic, Jack told me he had to get a referral from Dr. Dawson in order to see Dr. Talley (Thursday 10/17/96). When I suggested that he call the next morning and although he said "yes", he immediately got off on the 2nd floor and started to walk into the clinic again. I sort of knew he was thinking that he was going to Dr. Dawsonís office to get the referral, but Dr. Dawsonís office is on the 3rd floor, but he ignored me (or didnít hear me). When he came back, I asked if he were looking for Dr. Dawsonís office and he said "yes". I told him it was on the 3rd floor and did he want to go back. He said "no". I told him he could call him in the morning and he said "no". When this happens, I have to sit him down and look at him squarely to get his full attention and then present each question to him separately (otherwise, you get the same "no") for him to make a decision or choice. He opted to call Dr. Dawson in the morning. When we got to the parking garage, I asked him if he wanted to drive (I had driven down at his insistence). He said "no" and proceeded to get in the driverís seat.
10/14/96 - In an effort to get prices for the repairs to be done to the house, we visited Home Depot for sole purpose of getting prices only. I had made a ton of notes about what we needed for the adjustorís report due on 10/15/96 at 8:00 a.m. J. became confused, disoriented and verbally upset and started hyperventilating. He didnít seem to know his trade any longer and I had to ask questions about the prices we needed to get. He didnít seem to know the difference in paneling and doors. Sounds weird, but true. It would appear to me that this storm, although he seemed to relish its presence, he subconsciously knows the enormity of pulling ourselves out of it. But the scope of what has to be done overwhelms him, so he really does know, but apparently withdraws into himself so he doesnít have to think about it or make decisions. J. seems very comfortable with me making all the decisions which is somewhat contrary to our lifestyle. Jack always made the decisions even about what colors came into this house. I always tended to go along with what he wanted unless I had a real fervor to change, which was hardly ever the case. In my lifetime, I have learned that there are many things you may have different opinions about, but at what cost? An argument? A breech in a relationship? Silence for a period? None of that seemed worth it to me. Some may say that is demeaning -- some may say you are giving up your opinion, your worth, blah, blah, blah. It just wasnít worth it to me and hardly broke my spirit, now did it? to give in to something that really had no substance. And, you have to remember that some people have been bred that way. To go against the grain, (so to speak) would be considered a weakness. Donít let anyone push you around.....stand up for whatís right ...This is possibly an in-bred trait and so be it.
10/16/96 - One time when Jack was doing a few errands, I wrote a note with the errands on it and the plan was for him to take me to work so he could use the van. I also wrote on the note "Pick me up at work". Later, however, he decided to take Lucy Besleyís car so I went to work with the van but I didnít think to cross that particular item -- "Pick me up at work" -- off his errand list. Jack. later called me at work and asked what time I wanted him to pick me up at work. I said "no, you neednít pick me up -- I have the van". Jack said "well, you said for me to pick you up". His comprehension of the situation was not clear to him. In his fragile mind I had said to pick me up and he could not isolate the two issues -- one being that because of the change in plans he did not have to pick me up. When I returned home, he was still confused, but anxious, and hyperventilating. I think he thought he forgot something and he was confused. This happens a lot. He can only focus on one thing at a time -- throw in two things and heís lost it.
10/16/96 - In an effort to put my hands on some cash because I think this flooding is going to put us behind the proverbial eightball. I had a talk with Jack and asked if we could cash in his insurance policy with MetLife. Jack agreed. To assure myself that Jack did not misunderstand, I asked him again the next day and Jack said "yes". After I executed the necessary paper and had Kathy Turcotte witness (Jack was present), Metlife informed me that there were two policies. When I asked Jack if he knew that there were two, he said he was not aware of it. I suggested that he go to the safety deposit box again and check. This frightened me because of the previous trip but he said, "I know where to go -- near Northeast Shopping Center" so I gave him the key and told him the procedure. Later he surprised me when he said he knew there were two policies and quoted me the amounts. I guess I have to take the licks on this one, because I never remembered that there were two policies.
10/16/96 - Jack had an appointment with Dr. Talley, the dermatologist but because he did not request a referral from his primary physician, Dr. Dawson, the appointment was not honored but rescheduled for 10/21/96. (Note: Jack had always taken care of getting a referral number. and maybe I should have asked him about it.) J. then wrote on the calendar 11/20/96. I said I thought the appointment was scheduled for this Monday. J. said, "it is, see?" and pointed to October 21, 1996. When I pointed out to him that this was the 16th of October, and then showed him where 11/20/96 was, he became irritated and called me a nag.
10/19/96 - Dr. Cohen prescribed Prozac for Jack and Iím just getting around to giving it to him. J. should have taken it on Wednesday, but he had a another appointment with Dr. Talley and I didnít want him to be driving on the first day of a new medication so I delayed it. Now he has been taking it for two days. J. now claims today he is covered with a rash all over his body. I did not see any signs of a rash although he held out his arms and showed me a rash that was not there. But I do remember some years ago when he first went on Prednisone, he experienced a rash (it was only temporary) and another time when he had his knee replaced, he developed "jock itch", he was given Bactrim and broke out in a rash. I think he has in his mind that when he takes a new medication, he will break out in a rash. This bears watching, however.
A return visit to Dr. Cohen. It lasted 15 minutes. Dr. Cohen asked him twice to count backwards from 100 - the first by 3, the second by 7. J. was unable to do so correctly. Dr. Cohen asked J. if he thought he was getting better -- J. said, "yes, I am". I disagreed - and said I thought he was deteriorating. For the first time, Dr. Cohen referred to Dr. Booneís report and remarked that it was Dr. Booneís opinion that J. was in a severe mental depression, not Alzheimerís and that something at least can be done for depression. Dr. Cohen prescribed Prozac. The first dose prescribed by Dr. Cohen was for 7 days, 10 mg. supply - one a day. The second dose is by prescription and is 20 mg. In reading the synopsis of the drug, it warns against driving after use. Since he has a dermatologistís appt. on Thursday at 11:00, I made the decision for him to start the drug on Friday. Next appointment with Dr. Cohen is for six weeks. Dr. Cohen warned me that no noticeable difference will occur until after 4-6 weeks ingestion.
Getting gas: I had been given a $5.00 voucher at work for gas and I asked him to pull in to the Amoco station. Rather than filling the tank as we always do (we were down to 1/8 tank) he only put $5.00 in since that was the amount of the voucher. No reasoning... Later, he stopped at another gas station to fill the tank to "full"..
Noticeably walks slower. It used to be that I was the straggler. Even though I am a fast walker, I was always straggling behind, because he always was the faster walker.....now itís the opposite. I really have to deliberately put one foot in front of the other in order to keep pace with Jack.
J. refers to the TV remote as an "alarm". New......
Unfortunately, he is aware that I am taking the dominate role and thinks I am defying him and itís also hard for him to accept the subordinate role. Jack was "Johnny on the spot" lifting the furniture to get most things off the floor and ingenious getting the house for the onslaught.
10/21/96 - J. appeared to hyperventilating more than usual -- very short quick gasps. Knowing that he had an appointment with the dermatologist at 10:00 a.m. (which in the past has not phased him), I asked him if he felt OK. He said "no". When I asked what the matter was, he said "I donít feel good". Pressing further, I asked how was he sick, i.e., dizzy, headache, stomach, bowels, etc. He said, "I have a headache." He assured me he was OK to drive to the doctor and I seemed to be able to tell that he really was OK.
When he appears anxious and overly nervous, I do ask him if he is alright. Maybe I ask too frequently because now I think he feels that he has to tell me something and he always says he has either a headache or a stomach ache. I think he wants to tell me something so Iíll feel better. Tonight at supper, he started breathing quickly when I corrected him about feeding the cat scallops (he put a whole scallop down for KC rather than cutting it up into small pieces like he normally does). When I asked if he was OK, he said he had a stomachache.
10/21/96 - When I left for work today, I left a business card for Swanson Plymouth. It was my opinion that since the Plymouth van sat in 10-12" of water on 10/7/96, the wheels should be checked (brakes, etc.) Jack. does not agree with me, (see how I still rely on him?) but it will ease my mind, since I believe we will be buying this vehicle eventually and it will be ours. When I asked J. if he has called, he said "yes". I said, "what did they say. Can we bring it in this week?" J. said, "they will not let us fix the edger" (?) I know now that he is referring to the repair of the lawnmower which was doused in the floor. I find that when he becomes confused (and then I become confused!) the best method is to try to focus him directly -- by that I mean with no distractions and face him squarely. I asked him to sit down and I spoke softly and looked directly at him.
∑ †††† Me: Did you call Swansonís
∑ †††† J: † No.
∑ †††† Me: Who did you talk to about the lawnmower?
∑ †††† J:†† The Realtor - the real estate agent.
∑ †††† Me: Do you mean you spoke with Gateway Hardware (the company who now has the mower and the edger)?
∑ †††† J:†† No.
∑ †††† Me: Did someone call you?
∑ †††† J:†† No (then) Yes
∑ †††† Me: Who called you -- the insurance adjuster?
∑ †††† J:†† No (then) I think so.
∑ †††† Me:† Did he say it was OK to fix the edger?
∑ †††† J:†† No - he said he wouldnít give us anything for the edger.
∑ †††† Me: OK - Did he say it was OK to get the lawnmower fixed?
∑ †††† J:†† No (then) I donít know.
10/21/96 - Jim Belt called tonight to ask if Jack could come down and work for him. For the first time, Jim asked if it was OK for Jack to work. Previous to this, Jim has not acknowledged that anything was amiss. Jim had noticed during the past 6 months that he needed to be explicit in his directions to Jack about what he wanted done. Jim remarked that "when I can get his attention and explain pictorially precisely what needs to be done, he (Jack) does it just the way I want it".
10/21/96 - Two days on Prozac. I am keeping the pills so I know the dosage he is taking to eliminate any overdosage. Jack appears to be OK with this. Again, I mention that I have become the dominant one, and I now have to say "Jack, you need to do ....Jack, have you got your medical card with you"....Jack, donít forget to bring your glasses with you.....Jack, donít you want to change your shoes...." Jack is in total compliance and does what I ask without question. He seems to have accepted my role as the dominant figure. Several times, when this change of command started to emerge, he said "youíre such a nag". Perhaps I was and not thinking of his feelings. Iím still unsure of this role and I didnít exhibit a hell of a lot of patience at the outset. I wanted to be angry that this was happening and it probably showed.
Additionally, I remember being angry at the medical profession who appeared to take this whole thing lightly as though he has a cold, and perhaps it was Mrs. McElroy who was making a big production of this little depression, and I was given the impression (at least I thought so) that perhaps I was a cause and effect, or that maybe she just wants to get rid of him and sheís looking for an excuse to have him declared incompetent. Iím still not sure of my feelings about the medical profession in their treatment of J, but Iím working on a better attitude (and praying a lot!)
10/22/96 - This morning, the State Farm adjuster. Jim Childs, came and gave us a figure for the restoration of our home. He had called last night and said he could meeting with us at 8 a.m. While we were talking, Jack kept looking out the window and checking his watch. J. finally said, "well, where are they?" When I asked who he was expecting, he said, "the estimators". I believe Jack remembered the previous nightís call from Mr. Childs and substituted the term "estimators" for "adjuster". Similarly, previously, he had referred to an "insurance agent" as "the real estate agent", the term "dishwasher" spoken as "hot water heater". This is a frequent occurance -- an inappropriate wording substitution. Naturally, the average person will question and maybe on occasion, correct him. This sets off an instant hyperventilation episode and seems to upset him. I think that when corrected or questioned, he realizes that he may have made a mistake -- but what upsets him is that he doesnít know what the mistake was. I sometimes tell him -- depending on how I can call his mood. Making the decision to tell him or not to tell him is difficult -- I donít know if telling him upsets him, or if not telling him is helpful to him. I am unsure of the cure. When I asked the doctor, he said it doesnít matter. However, I think it would matter to Jack because he is such a perfectionist. and I donít know if he is focused during these memory lapses. Is he in a memory lapse only momentarily, or is it for longer periods of time. That, I think, is what makes the difference of telling him or not telling. Oh, how I do ramble on, but I need to talk even if itís only to my computer. Perhaps I should name my computer so I can feel I am talking to a real person who listens without judging. OK, from now on, this computer is named ZOE. I always imagined that if I had given birth to a girl, I would call her Zoe. Itís so mysterious and who can forget the name Zoe?
10/22/96 - Jack is at Margaretís today. I asked how he did and she said "fine" although she said he seemed vague and remote. He painted some awnings for her and will be doing some more work for her later. Tomorrow he is going to Jim Beltís to do some ceramic work. Tonight Walt Burd called and asked to do some paneling and Jack said he would do it on Monday. I am a little apprehensive about Jack driving but I donít know if Iím ready to face telling him. Although he occasionally has gotten lost, I just donít have the guts to pull the keys from him yet. What am I waiting for -- something to happen. I hope it wonít. Pray for me, Zoe!
10-23-96 - After a week of asking J. to make an appointment with Swanson Plymouth Co. to have the 96 Voyager checked out, I finally called. J. said he didnít think anything was wrong with the van. Noticeably so, maybe there wasnít -- but 5 cars on this street had major damage and they had as much, maybe less, water than we. I just would feel better if it were checked. After all, it really isnít our van, but we do have to care for it.
10-24-96 - Jack put the barrel out today, thinking it was Friday. When I told him it was Thursday instead, it didnít register because several times during the day he referred to it as Friday. Jack even wanted to go to Ryanís for supper, since our habit has been to go there every Friday evening for their buffet. On Friday morning 10-25-96, he questioned me when I got ready for work and asked why was I going to work on a Saturday. Still thinking "Friday".
10-24-96 - Today Jack asked me the phone number of the "sheet metal" place. C0onfused, I asked him why he wanted to call a sheet metal company. Jack replied "to see if the cushions are done". (Sheet - seat, similar?) Tru-Fit Seat Covers were recovering my porch rocker cushions. When I got Jack. the number of Tru-Fit, he answered the phone: "This is Jack. Am I ready yet?". Please note we are not on a first name basis with these people so Iím sure they didnít know what he meant. I told him to ask if our cushions were ready and to give the man my name, since I did leave my name and not Jackís. He did. He said, "This is Carol. Are they ready yet?"
Using a phone has been a problem for J. We got a newer phone and I programmed in all the frequently called numbers, i.e., children, Lil, Kenny and Margaret. Although I have told him he only has to push the button with their name on it, he doesnít remember to do this or he is unsure of the system. He will still look up the number in our Rolodex.
10-22-96 - Noticing that Jack had the TV real loud, I asked him if he had ever put new batteries in his new hearing aids. He said "I donít know". I asked him to put them in or did he want me to. The audiologist had said to replace the batteries every two weeks.
He said to Jack, "you will notice that you are turning up the TV" and the technician said to me, "or you will notice that it is too loud for YOU". Now every time I say even the slightest word, he will grab his ears as tho I am talking too loud and I probably am. I am so used to speaking loudly for so many years, that I will have to adjust, too. First I had to adjust to having the TV set up so loud -- now he gets irritated if I have the radio on. He says its too loud. (my old complaint!)
10-25-96 - When I asked him if he had called Gateway Hardware about the mower and edger to see if they were ready, he said that they said they "canít be fixed because theyíre no good". I asked him what the charge was and he said "nothing". Altho I find that hard to believe they will not charge us, I just donít want to deal with it right now, so I didnít pursue it. However, during supper at Ryanís, I asked him if he were going to look around for a lawn mower, he said "no". When I asked him what he will use to mow, he said "my lawnmower -- it still runs good!". !! When I reminded him of what he had previously told me, he held his head and started to hyperventilate. Lost my patience and walked out of the restaurant to the van. He "blew" his head off all the way home. Later he said he would have cut the grass today but he didnít have a lawn mower to use. He completely forgot the previous conversation only an hour ago when he told me 1) it couldnít be repaired, and later (2) it was running good. There was no recollection of the conversation. I know I shouldnít do this, but it is so exasperating to try and get the right information from him. This is a very frequent problem. Sometimes when I see him squint and his brown furrowed, Iíll ask if he is OK -- "are you feeling alright?" Heíll reply (always!) I donít know. If I go through the routine of "is it your stomach", "do you have a headache", blah, blah, blah, the answer will always be the same. If I am expecting a call and leave the house, Iíll ask if so and so called back. He will (always!) say "no". Later I will learn that they did call and speak with Jack.
I can understand that he might forget -- what I find frustrating is that when I ask, you would think it would trigger the fact that they did, in fact, call. When I tell him that they told me they called back, he will whimper, hold his head and blow! (Me, too!) See my patience is wearing thin -- I pray a lot for more patience! I really donít understand depression. I have read a lot, people have told me a lot, but nothing I read covers the vacillation of day-to-day experiences such as I have mentioned. These signs are mentioned in materials covering Alzheimer's. However, Dr. Cohen told me on the last visit that it was NOT Alzheimer's, but depression. I hope heís right. Again, who I am to question. Heís the doctor. I just wish the sessions were more frequent and they knew J. like I do. This is not Jack in that body. I really do know him better than anyone. When he falters in memory, I know what word he is searching for. When he asked me for the alarm, I know he means the remote control for the TV or video. Why canít he come up with the right word? Why does he substitute "dishwasher" for "water heater"? When he refers to a photograph (usually one we have in a frame), he says "screen". Heíll point to his hair, and say "ear". The words that he substitutes are similar in meaning (for instance, dishwasher and water heater are APPLIANCES, the alarm he refers to in place of the remote is similar to that he had for the van burglar alarm, etc.) See - you have to begin thinking like him, although sometimes even I need a clue! Earlier when I mentioned the incident about the sheet metal company, I knew he was looking for the phase "upholstery shop". Why did I know? I donít know -- I just knew, I guess, or maybe because I know and maybe J. knows that there is a sheet metal shop down the road from the upholstery shop. Who else would know that besides me? No one!!!! See? We really are joined at the hip!
10-25-96 - In selecting what we would watch on TV tonight, Jack mentioned a few programs that did not appear in my TV guide (we each have our own). I discovered that he was looking on the wrong day. I had to explain to Jack that he needed to turn to the page that said the name of the day, i.e., today is Friday, so you look on Friday. He didnít seem to understand the procedure. This has not happened before. Jack kept saying that on his TV guide, such-and-such was on even though he was looking on the wrong day, i.e., Thursday.
While I was trying to get estimates of what we need to do for restoration. I asked him if he would be doing the plastering and trying to get a handle on what needed to be done, he said he would do it (with Ralph, if he came down) and would need a flat bar and would adhere to drywall. The next day talking to Lil on the phone, he told her that he would never attempt to do a plastering job -- that he would bid it out (?)
10-26-96 When returning home from the Seafood Festival, I wanted to get a Tampa Tribune paper. I asked if he would stop at Subway, where there was a paper box and he wouldnít have to go out of his way. He said "sure". With that, he turned right (he should have gone across the intersection) and drove past Subway and pulled into the Village Inn. When I asked why he didnít pull in Subway as I asked, he said "I did". Again, heís making generalizations -- thinking that Subway is the same as Village Inn, lumping them all into "restaurants". Iíve got to learn to think like a thesaurus!
10/26/96 - J. made several trips out to the screened porch, looking toward the end of Bay Street and 92nd Avenue. Curious, I asked him what he was looking at. He said, "Iím waiting for the motorcycle". When I asked what motorcycle, he said, "Brianís". It took me a while to get the connection, but we worked with Brian Letourneau at SPHA and he had made several trips to our home to upgrade our computer. When I asked J. if Brian was coming here, he said "yes".
We were not exactly on a "visiting basis" with Brian. I then asked if Brian had called to say he was coming here, J. said "I donít know". Brian did not come. By the way, this is on a Sunday.
Today Jack cut the grass with the lawnmower that he had twice told me didnít work. He also told the insurance adjuster. One time he said it was working...later he said it wasnít.
Sunday, 10/29/96 - Jack woke me up to tell me Dick Van Dyke died. When I read the paper, it was Morey Amsterdam who had passed away and who played on the Dick Van Dykes Show several years ago. When I told Jack that Dick Van Dyke had not passed on, he still insisted that he had, even when I showed him the paper. Several days later, he still referred to Dick Van Dykeís death.
Tuesday, 10/29/96 - (Comment at dinner):
†††† Me: Do you want an onion roll with dinner?
†††† Jack: No, Iím going to have water.
Normally, the assumption would be that Jack didnít hear when, in fact, he does hear, but not comprehend.
While meeting with the bank mortgage officer, Jack told her (Dorothy Millits) about a flood situation that Frank Cooke had discussed with me (confidentially, although I had told Jack). When I related the story, I told Ms. Millits that I would not give out his name nor his bank, Jack. piped up and said "Frank Cooke". Previous to this, Jack. had not uttered not one word during our meeting, nor did he after he revealed this confidential piece of information. My fault -- I should have kept my mouth shut too!
Today is Halloween. J.ís previous opinion of Halloween has always been a little negative. He never wanted to buy treats for the kids nor even see the kids. However, we did go to the mall where they used to have a contest for the kids and the merchants gave out candy. We were able to see a lot of the kidsí costumes and he seems to enjoy that. I often wonder if he had an previous bad association with the holiday as a child or maybe with his own children. I had asked him a number of years ago and he said he hadnít.
Also today, I had to have a proctosidmoidoscopy (a roto rooter of the colon, graphically!) and Dr. Dawson also discussed my recent gynecological exam. While I not remember either the name of the gene or condition, Dr. Dawson said I am in the 80 percentile for cervical cancer with this gene. Although it never was mentioned to me before, the last 4-5 years have been referred to Dr. Selmon for a re-examination since it is of a suspicious nature. While these things are upsetting to me I naturally mentioned them to J. so he would be aware of them. J. simply looked at my hairline (like he does frequently) and said "is that good?" I said "cancer, Jack, CANCER, is a real possibility" While I really didnít want to alarm him and maybe I shouldnít have told him, I guess I was really looking for a shoulder to cry on. Ironically, my first thought was "whoís going to take care of Jack". I could tell by his expression that nothing was hitting a nerve -- any nerve for that matter. Today I thought that he reactions to various things seems autistic. No recognition, no emotion. After my exam, we went to breakfast at the Dome. When he was placing the order, the server asked "fries or grits". J. said GRITS!!! Anyone that knows J. knows that even the sight of grits makes him ill. He has even remarked to a fellow customer having grits, "God, how can you eat those things!" Weíve often joked about the fact that it must be an inbred things -- that you must have to be raised on them, because every northern person we know has the same opinion as we.
Anyway, I jumped into the conversation as he was ordering and said "Jack, do you want grits?" He said vaguely, "no". I asked "do you want fries with your breakfast?". He said, "fries". This happens frequently. When asked a question, the right answer doesnít come out. The bad thing is that the person doing the questioning doesnít know that what he is answering isnít what he wants. I really feel like they look at me like Iím some nag or something -- that SHE is doing the answering for him -- what a shrew!
Even today when I went to the store to buy cereal, I asked him if he wanted me to get the same thing -- bran flakes. He said "no". I asked what he wanted and he said "Grape Nuts". Again, I KNOW that he hates Grape Nuts because of the texture. I asked him twice, Do you want me to get you Grape Nuts cereal and he said yes twice. I let it go for about 15 minutes. As I was leaving, I asked him what kind of cereal he wanted me to buy him. He said, Bran Flakes. If I had gotten him the Grape Nuts, he would have puked. Now I know that sometimes tastes change and maybe he might like to try something else. Trying out this theory didnít work. When I did what he told me to do and went against my better judgement (knowing him as well as I do) he vascillated again and didnít remember having told me to do something different. (for instance, if I had bought the Grape Nuts, it would have upset him.) Now does it REALLY make any difference between Bran Flakes or Grape Nuts??? I ask you....... Ah, yes, it does make a difference -- to HIM. See, I try to please him or it is upsetting to him to change a routine. Thatís the frustrating part. Additionally, I have found that any "change of order" or if I deviate from our normal routine, is very upsetting to him. He will hold his head (as though it hurt) and shake it and start hyperventilating. Now thatís when I lose it -- the tears come. Not just from frustration, but to see him so lost and confused. However, minutes later, itís as though it never happened. Heís forgotten. Tonight at the restaurant, Karen, our server, asked if he would like some more water (he always has water with his meals in a restaurant, but at home, it could be either milk or water - sometimes coffee milk) and he said "no". In less than a full minute when Karen passed our table filling other patrons water glasses, J. asked if she would fill his glass. It may appear as though he didnít understand the question at first, then had a delayed recall and reaction. This is a frequent response. At times I tried to avoid dual questions. Instead of saying, "do you want milk or water", I would first ask, "do you want milk?", and wait for a response before finishing the question "or water". This doesnít work, either. Iíll get the same answer -- "no" as a first response to "do you want milk" and then "no" to "do you want water". His reply will invariably be "Iíll have milk (or water)", as though he had not been asked either.
While reciting some of Jís responses, to others they may appear petty and picayune but itís not a normal behavior for Jack, so I record them primarily to establish the behavior pattern and to see if. after a bit of Prozac, this eccentricity is significant either before or after.
Today was not one of the "good" ones. To begin with, I discovered that our answering machine was damaged by TS Josephine. Here it is three (3) weeks later and we didnít even give a thought to it. Actually, didnít even notice that we were not getting any calls -- not even the occasional ring back you get from solicitation calls. So off to the store to buy a new one (funny how you become dependent on these gadgets.) I said to J. Letís go to Big Lots and if we donít find one there, letís go to MacFrugals (another closeout store up the road apiece). We did buy one. Actually the first one we saw at a good price - $16.99. -- a GE that looked pretty simple to program. So out we go and Jack heads for U.S. 19 -- MacFrugals! I thought thatís where he was heading, so I told him since we had already bought one, we neednít go all the way up to MacFrugals. Not a clue -- the comprehension of the situation at hand was lost to him -- the things he remembered was "Big Lots" and "MacFrugals", not the reasons why. OK, so we head home (the long way! but thatís OK) The programming and set-up of the answering machine is too technical for Jack to set up, although I can remember the most complex operations were always a challenge to Jack. He took pride in being able to assess a situation and be successful at it. Now, he will not even attempt it. I have never had that gift of technology like Jack, but now I find that Iím smarter than I gave myself credit for and I can figure it out (sometimes!) Anyway......to test the answering machine and my recorded message, I told Jack I was going to run down to Ken and Kathyís to call home. Faltering with words that just couldnít be formed, Jack indicated that he didnít want me to do that -- not to bother them. When in reality, I believe he didnít want me to go specifically there, because Kathy and I get gabbing. So I went along with him and said I would go up to the Shell station at 89th Avenue and use the pay phone. I told him not to answer the phone, but to let it ring the four times so the machine would pick up on it. When I dialed the number, he picked up and said "hi", knowing that it was me. Dang! Used my last quarter so I had to go in the station for change (you know they love that!) But guess what? He picked up the phone again! Dang No. 2!!! I lost my patience and told him not to answer the phone until I got home and to let the answering machine pick up on it. Docilely, he said "ok". When I came home, I showed him how it worked and how to retrieve the message which is similar to the old one, except you need to press down the MEMO and the PLAY keys after you listen to the message. I KNOW he will not remember, but I hope after a few times, he will learn by rote. OK, now we have supper. I made a salad and nuked a pizza. Because I can only nuke one at a time, I gave J. his and told him mine was finishing, but to go ahead and eat while it was hot. (no answer but he stared at my hairline. Sometimes I think heís trying to convey that itís OK or YES, so he wonít have to talk -- the words come very hard for him. I asked him if he wanted extra cheese (more hairline staring) so I let it drop. J. then asked why I wasnít eating. I repeated I was just waiting up for mine to heat. (more hairline starting). Again, he asked why I didnít want to eat and could he have some more cheese. I lost it. I burst into tears and retreated to the bedroom for a good long cry. This has been a long time coming and I lost control. It didnít really matter. J. didnít seem to notice that I wasnít there, and of course, his oblivion to whatís around him has exacerbated more noticeably this week. He has been taking Prozac for 12 days. God, when and if will we see an improvement...I pray for a positive sign. This six foot shell of a man is exactly that ... certainly not my Jack as I know him and thatís my frustration -- the realization that nothing I can do helps. Weíve putting all our faith in Prozac and the wonders that Iíve heard that it will perform.
I know that this outburst may affect Jack in some way, even though he appears indifferent and aloof and that his delicate mental impairment should be kept as serene as possible. I have to try and curb my impatience, but dam, itís hard. There are so few people that I can unload on and most of them are not local -- my phone bills to Rosie and Bob are going to be horrific, but itís my only outlet. I have to admit, though, that my outburst of tears helped my attitude some.
Observation: I have noticed more recently that Jack tends to speak in "shorthand". He will only utter a few words to communicate, and it is his hope, Iím sure, that we will all know what he means. Unfortunately, this is not always the case. Example: He came in from outdoors one day and said, "it peels excessively" (??) When I asked what peels excessively, he repeated the phrase, thinking I knew what he meant. I donít know if I should challenge him or not by asking further questions so I can understand what he means. Depending on my mood, I do and I donít. Neither is usually successful, I guess, depending on his mood also, but he does seem to know when I donít understand -- and becomes irritated with me, sometimes shouting. This instance I did challenge by asking to point to what was peeling (his skin? the house? the cats?) and as it turned out, it was the paint he recently put on the carport. Whew! Another example -- one morning before I got up, he left me a note on which he had written "paper town down". This was scary because I noticed that the van was missing from the yard.
To make a long story short, he had taken the newspapers down town to the recycling center. He just reversed the order "down" and "town" and I didnít get it.
Friday, November 2, 1996 - Went to new store - Smart and Final - to see what it was about. Later Jack referred to it as Jewel T. Surprisingly, I had forgotten that many years before (I donít know how many, but 15 at least) it was a Jewel T supermarket. Amazing......Minute to minute, Jack probably cannot relate to another person what he had for breakfast, or if at all. Yet, he will remember a market from 15+ years ago. However, repast is not always recalled. Iíve noticed in some seniors that this is the norm, remembering pieces from years long past, and having little memory of the most recent events. This still does not fit the memory of Jack. It is a little of both. It seems that someone or something took a small eraser and randomly took out some little pieces his memory -- a little here, a little there and just a bit over here. Saturday, March 13, 1999Conversation:
†††† C: † Any mail today?
†††† J: † No - they didnít come today..
†††† C: † You mean the mailman hasnít been here yet? (it was way past time for delivery of mail)
†††† J: † No. We didnít have any mail, but Iíll get it out of the mailbox.
†††† ????? ††† Jack retrieved the mail from the mailbox.
Second episode - We were leaving to pick up Lucy and her friend for dinner out. Since he frequently forgets to bring his wallet with his drivers license, it has been a habit for me to remind him, i.e.)
†††† C:†† Have you got your wallet with you?
†††† J. † No.
†††† C:†† (since he continued out the driveway, I said) Stop and Iíll get it for you.
†††† J. No.
†††† C. † You shouldnít drive without your license. Is it in the bedroom and Iíll get it or do you want me to drive?.
†††† J.†† Iíll drive. I have my drivers license in my wallet.
†††† See? after a while you think itís you that doesnít understand.
Two things occurred today that, to me, falls in the category of becoming delusional.
1.†† Because Ralph Jones offered to come down and help us with the restoration stuff here at the house, I began to attempt to organize my notes and determine what comes first in starting. I want to have some materials here for Ralph. I asked Jack if we should order the baseboard. Jack has said that we need not have any plastering done. I then calculated the number of lin. feet we will need. and asked Jack to write it down. He wrote it on this weekís TV guide. I doubt that he will remember where he wrote it or the number of feet, but I put a note in my log book. but I want Ralph to look at it first. Anyway, Kenny Turcotte has offered his discount if we need to order from his employer who has a lumber yard -- one of the things we need is the baseboard. I asked Jack if he wanted to ask Kenny to get the baseboard for us -- Jack said "yes". When I asked J. if he knew the name of the company, Jack said "yes". I said, "what is the name and Iíll look it up in the phone book." Jack said he didnít know. He then started out the door, apparently to see Kenny, without the specifics of what we want, let alone the number of feet. I asked him if he remembered how many feet, and he said "I donít know". What size? "I donít know". I called him back home.
11/2/96 - I noticed that Jack had placed his appointment card with the dentist, Dr. Shevock, on the dining table. Several months ago, we received notice that Dr. Shevock had passed away, and I tossed the appointment card with the intent to search for another dentist. We had been going to Dr. Shevock for nearly 23 years. But apparently, Jack had fished the appointment card out of the wastebasket and placed it back on the table. When I reminded Jack of Dr. Shevock.ís death, I again tossed it. Again, he fished it out and it appeared on the table the next day. I sat Jack down, faced him to get his attention and explained ever so slowly and deliberately, that Dr. Shevock has passed away and he did not have an appointment. His reaction was completely blank -- no awakening as though he may have heard it before and would say, "oh, yeah" -- no reaction to the passing of Dr. Shevock, and might have replied, "oh, really?" or ? Oh, no!"....nothing. But the card did not reappear again.
11/18/96 - Jack has been keeping busy doing stuff for Margaret although she tells me sometimes he rides his bike down without announcing that he is coming. And also, now that we have access to the insurance monies, we can order materials and supplies. Jack has put joint compound on the entire house after a tedious task of removing all the broken and old vinyl baseboard. He then put a sealer over the entire house 2 ft. from the floor up to seal all the walls. Although The Wall Doctor advised us that the plaster was in good shape, since it was not discolored, mildewed, nor bubbled, we have decided not to re-plaster on his advice. Whew! Today, Jack painted the entire living room, removing all the pictures, long horns, plants and all the knick-knacks and some of our glass collection -- a tiresome and time consuming task, but he forgot to paint the ceiling. Additionally, he removed the drapes, but inadvertently hung the double drapes on the single windows. He then had to remove and replace again. Dear heart..........
I ordered a bulletin from AARP concerning Depression in the Older Seniors. Although it addresses clinical depression as a disease that usually is affiliated with an incident that results some trauma to the nervous system, it still does not address Jackís lack of comprehension, i.e., the drapes I mentioned above and that sort of thing. Jack has always been a perfectionist and sometimes to his disadvantage, has pretty much ruled his life. Everything has an order, a place, and things must be done "the right way", mostly his way, actually, which is not to say that he is fanatical with other people about it, but he is with himself. Itís this trait that is missing now. The things that used to be so important to him, now ceases to exist, and thatís not my Jack at all. He used to be so particular about his tools and how he cared for them and now he doesnít even acknowledge that he has tools at all and just lets them deteriorate.
The latest quirk: In moving about our small home, whenever we meet in the same room or the hall or pass each other, he acts as though he hasnít seen me in a while - I mean, a L-0-n-g while. Heíll say. HI! How ARE you? And before I can reply, heíll say "FINE", as though I had asked him the same thing or he is answering FOR me -- I canít figure out which. But I am glad of this latest quirk (as I refer to it!) Is this a forward step? I look at it as he is aware of someone/something else besides himself and he cares. Either that or he is mimicing a somewhat normal, acceptable type of address -- "Hi - how are you" and providing their response himself: "Fine".
Ralph Jones is here to help both of us in restoring the home. At first I wondered if this was a good idea -- to subrogate Jack to Ralph. Jack has always been a dominant figure and always knew the answers. This is not meant to criticize, but simply to best describe his previous personality. You know the old saying, "if you have one, he has five" or something like that. I wondered how the two would or even, could work together. While both are excellent craftsmen, I wondered if there had to be a "straw boss". But surprisingly enough, Jack is more than willing for Ralph to assume his own work -- there is no suggestions on how to do it better (unlike his previous demeanor) or even offers any help with the heavier work. Itís as though this is someone elseís house (maybe Ralphís?) and J. is perfectly willing to help. But there is no initiative on Jackís part. Itís now apparent that he needs to be told what to do, even if itís from me, and strangely enough, seems to welcome being told what to do, as if he were grateful for someone to guide him. I feel like I am the building superintendent and when I wonder about something, I ask Ralph his opinion. If I ask Jack, I know Iíll get a "Sure" or a "WOW". Those are his answers for everything, so you never know if he really is thinking about what you asked him. Those two words are quick on his lips. One time in a fit of impatience, I said he needed to think of two more words besides those!
November 26,1996 - Jack had an appointment with Dr. Cohen today. I was unable to go with him because I had forgotten it was today and I didnít make any arrangements for work, so I thought it would be OK for him to go alone. However, I wish I had gone anyway, because Jack tells me that Dr. Cohen doesnít want to see him for 6 months! I wonder if Dr. Cohen observed any change in his behavior or not. I wish Dr. Cohen would see me without Jack, but he previously said he wouldnít. -- that this is a joint effort. I suppose any spouse could fabricate or lie about events and such and the appearance of both person would rule out that ever happening -- at least thatís what Dr. Dawson told me. I do, anyway, feel like such a traitor when I have to offer a different version when I see Jack giving incorrect information to Dr. Cohen, so I guess I can understand. Understand, yes -- but do not agree with, necessarily. For instance, Jack told Dr. Cohen he never had any problem with alcohol. I have no idea whether Dr. Cohen has the correct information or not, but I think itís significant that the records reflect that he is a recovering alcoholic. Additionally, when asked about the scar on his right knee and did he have reconstruction of his knee, his reply is "no". Again, I think it should be noted in his medical records that he did have a knee replacement in 1988. Or does Dr. Cohen KNOW that Jack has not given the correct information? Subsequently, HOW DO I KNOW that Dr. Cohen does or does not know unless we two communicate? Why do I have to make noise like a bullhorn to be recognized and why doesnít anybody want to know all these things I am writing here? Is it not significant to Jackís treatment, or have they seen so much of this disease that they are all alike? I DONíT THINK SO! So I guess Iíll become that bullhorn.
December 1, 1996 - When we talked by phone today with Lil, she asked where we had Thanksgiving dinner. He said "Outback", when in fact, we went to Outback yesterday (11/30/96), but had Thanksgiving at Ryanís Steak House. Even though I corrected him, he insisted otherwise. See? I wonder if I should correct or he takes that as criticism. I feel as though I should be helping by correcting or maybe by correcting, and it will jog his memory, but maybe Iím not doing the right thing.
One example of Jackís inability to speak fluently (only I know what he usually means). As we were getting ready to go to Disney, Jack pointed to Ralphís shoes and said "Do you have shoes fitting on your feet?" Ralph looked puzzled, but I know Jack meant to say "Do you have comfortable walking shoes on?", meaning that we would be doing a lot of walking and did he have his best fitting shoes on. Another example, also at Disney, occurred while we were ordering food. Always Jack assumed the task of ordering food, whether it was just for the both of us or even if we were with company. Ironically enough, I had forgotten this trait until this occurred. We both told Jack what we wanted -- Ralph, a cheeseburger and coke; for me, chicken tenders and a diet coke and Jack was also going to have a cheeseburger and a coke.
When he approached the server, he asked for "Tender Vittles" for me (a cat food product, no less!). Everyone within earshot and except Ralph and I, thought he was being funny and the server was vexed to say the least since it was at a very busy time and didnít appreciate the supposed humor at this particular time. Jack, however, was nonplussed, since he truly was not aware that he said anything different than "chicken tenders". Itís that knowledge that blows my mind -- that he really doesnít know. His perception of what is said doesnít register.
December 7, 1996. Jack and Ralph have been painting with Jack doing most of it and Ralph confined to the carpentry repair stuff. But today, Jack painted the whole house 6" from the floor black. I know what he was thinking. It was his idea (although I didnít think much of it myself, but to avoid any controversy, I agreed) to paint the toe kick underneath all of the built-ins black -- the living room unit, the built-ins in each bedroom. When I came home today, the whole house 8-12" up from the floor was painted black, and in addition, he did it freehand, so none of it was even. I think he just forgot and kept going when he started painting. His only thought, I think, was that he remembered that he had to paint something black and it was near the floor.
December 8, 1996 - Went to Seminole Groves to help Ralph buy some oranges and grapefruit -- instead Jack bought some, I guess forgetting that we have oranges in the backyard and grapefruit in the front yard.
I have noticed that Jackís voice has changed. It has become forced and high-pitched, as though it is an effort to speak and get the words out, or as though he had adenoids problems. Although it is true that in his withdrawn state, he doesnít talk as much, but I talk to him -- he just chooses not to answer nor contribute. Maybe the lack of his voice has reduced his ability .....?
December 12, 1996 - Today Jack said he had a toothache. Previously our dentist, Dr. Shevock had passed away and Jack had a scheduled appointment for a cleaning on November 1 and frankly, I had neglected to get serious about a search for a new dentist. And even though I told Jack about Dr. Shevockís passing, he insisted that he had to go. It took several "sit down and face me and listens" to convey to Jack that there was no appointment because Dr. Shevock was not there. I still donít think he totally understood. But anyway, I told Jack he would need to go to someone else and I offered to call someone else, but he said "no" (which he doesnít always mean "no") I suggested American Dental on 73rd Avenue & 4th or Florida Dental Center at 7500 4th St. He said "Iíll go myself". When I asked "will you take me to work first and then you can have the van", he said "no". I then asked "are you going to take Lucyís car", he said "no". I asked, "how are you going to go to the dentist", he said, "Iíll take Lucyís car". ??? After I returned from work, ....
†††† C: † Did you go to the dentist?
†††† J. † No
†††† C. † Does your tooth still hurt? You really ought to see someone.
†††† J.†† I got some medicine to take. (he showed me the prescriptions)
†††† C. † Who gave you a prescription?
†††† J. † The dentist.
†††† C.`† What dentist?
†††† J. † The one in the office.
†††† C. † What office - what dentist did you see (I didnít recognize the name on the prescription)
Jack then told me he went "down the street". I had given him a check in the morning, so I asked him who did he make the check out to and he showed me the slip from Florida Dental Clinics at 7500 4th Street N. and it was for $29.00. (This was not the dental clinic I had suggested he go to, but itís OK, I guess.) That told me that they were treating him to get rid of an infection. I asked him what they were going to do next and did he have to go back. He said "yes, they are going to pull it on Monday morning". All this to find out...... Normally, he would have volunteered this bit of info the minute I hit the door and told me everything. Now I have to drag it out of him -- you see, he doesnít choose to talk. If I donít question him each day, he will volunteer nothing. Itís like living with an autistic being in his own little world. Depression? I donít think so.
Another example. I saw Jack early this morning with his painting drop cloths. I asked him what he was going to paint (the whole house has been painted twice!). He said "no". (meaning heís not going to paint?)
†††† C. † Youíre not going to paint?
†††† J.†† No
†††† C. † What do you have the drop cloths for?
†††† J. † Iím going to paint today.
Another example In an effort to hang our Xmas lights, certain things didnít work and Jack was unable to fix it, so I suggested he call an electrician. Next day::
†††† C.†† Is the electrician coming today to fix the light?.
†††† J. † No
†††† C. † Heís not coming to fix the light?
†††† J. † No
†††† C. † Do you know when he is coming back
†††† J. † Today
Today when we went to Home Depot to pick up 2 more halogen lights he had broken, I said
†††† C. † Do you have enough money on you.
†††† J. † Yes
†††† I went outside to look at the Plants and Jack. followed me out a few minutes later.
†††† J. † I need some money
†††† C. † I asked you if you needed money and you told me no.
†††† J. † Yes, I donít need any money.
†††† C. † Do you need money to pay for the light?
†††† J. Yes.
Someone recently told me that patience is a virtue that will get me into heaven....Iím practicing, Iím practicing!!!
DECEMBER 15, 1996 - APRIL 28, 1998
12/15/96: Today Jack woke me up and asked for a check and his dentist card. Since Jack has an appointment tomorrow - Monday -- I told him that it was Sunday today and he goes to the dentist tomorrow. He says, "No", (but I think he means, "Yes").
Sometimes I think he truly doesnít know WHAT he means when he is mouthing YES or NO. I donít think he know what each word means. Itís as though it just pops out of his mouth beyond his control and he doesnít really know what that word is. He seems to say NO when he wants to say YES. I guess itís the same as his confusion with the colors red and blue -- if you donít know what "color" is, whatís difference does it make if you say one for the other. I have noticed that the tone of my voice has some significance. If I ask him a question but drop my voice (as though itís a statement and not a question), he thinks it does not require an answer and does not reply -- he simply stares as though he is indicating "acceptance" to whatever I have said. If I make a statement and raise my voice at the end of the statement (as though it were a question), heíll answer YES or NO, even though it did not require an answer. This, to me, indicates that his focus is not in synch and is unable to concentrate or comprehend the actual words spoken. . In addition, when given multiple choice questions - (which I now try NOT to do, but sometimes I forget to choose my words carefully as well as my tone of voice) i.e., Do you want dirt or oatmeal for breakfast? -- heíll reply "dirt". Itís only always the sequence -- it all depends on which word his mind focuses on. Sometimes itís the first word, i.e., "dirt", and sometimes itís the last word spoken -- "oatmeal". I mention this here only to try and understand how his brain is registering -- not that I can determine that -- but maybe if I write it down, some physician can interpret, or place a significance to it.
Today I became a nut case and lost my cool. Don't tell me I shouldnít....I KNOW I shouldnít! Not only paying for a light fixture ($130.00 yet!) but trying to get it installed has completely worn me down to a nub. Last Friday, not only did he break 5 (I think 6) halogen bulbs by inserting them wrong, but we completely depleted Home Depotís supply and had to go to Scottyís. I am very surprised that Home Depot continued to honor our exchanges for new ones. The bulbs are $13.50 each. In addition, he destroyed the socket in which they are inserted. So I had to return the fixture to the store (without a receipt but they did honor it). The electrician suggested that since Jack was clearly impaired, to get another fixture with an standard bulb. When we got to Home Depot, Jack kept going back to the salesperson about the returned fixture and proceeded to order another from some other store, when in fact, I conferred with Jack about another light fixture which he said he wanted. The salesman finally became disgusted and left the area. Jack was enthusiastic about the new fixture, but then handed me a slip with the light requirements on it and instructed me to call on Wednesday, because another light fixture would be coming in with our name on it and I should pick it up.
And......The electrician had a difficult time getting the facts straight about installing another fixture. (I am uncomfortable with qualifying Jackís interaction with other people. When I say "uncomfortable", I donít mean embarrassment for me, but I try not to limit Jackís interpersonal relationships with people by preceding his action/conversation with a statement from me that he may not mean what heís saying. I give him the lead first and if itís not working out, then I intercede and (maybe) offer an explanation or try to resolve it.
†††† Electrician: Call me when you get another and Iíll come or some one else will install it for you. OK?
†††† J. † No
†††† E. † Oh - are you going to install it?
†††† J. † No
†††† E.†† You want me to install it for you?
†††† E. ††Youíll do it yourself?
†††† J. ††No.
The electrician looks to me....what do you want me to do? I told him we would purchase another fixture and call his office to install it when we got it. He said OK. Now at Home Depot, I go through the same thing. Yes, heís going to install it -- no, heís not going to install it.
Sunday morning J. starts moving the dinette chairs into the living room. When I asked what he was doing, he said:
†††† J. † Iím going to install the faucet.
†††† (I knew he meant "Light" since there is nothing wrong with the faucets.)
†††† C.†† You mean the light fixture.
†††† J. † No
†††† C. † Are you going to work on the dining room light?
†††† J. † No
†††† C. ††Then why are you moving the chairs?
†††† J.†† Iím going to use the light (meaning he was going to install the light)
†††† C. † I thought you wanted to have the electrician do it
†††† J. † Yes - right
A. But you are going to do it yourself
†††† J. ††No
†††† C. †Jack, look at me and tell me what you are going to do. Are you going to put up the new light?
†††† J. † No
†††† C.†† (Repeat) Do you want the electrician to do it?
†††† J. ††Right (he continues to move the chairs)
†††† C.†† Stop for a minute and look at me. Are you going to put up the light?
†††† J.†† No - right.
This went on for several more minutes with me asking the same questions, but trying to say it differently so I would know what he was doing or trying to make him understand. I really wanted to have the electrician do it, because I think J. got real anxious when going through the last light installation and he became unsure of himself. On one hand, I donít want him to feel incapable or inadequate. However, on the other hand, I certainly donít want to further frustrate him if this is one of the skills he no longer has -- and it does have to be done after all.. and it is becoming costly. This has to be accomplished with his direct attention to me so I look at him and make him face me -- are you going to put up the light? J. says, "right, they can put it up Monday" So here I am, again pounding away at my computer. Several hours later, I noticed that the chairs had been returned to their place and nothing had been done about the light.
12/16/96 - Today we are expecting delivery of the sofabed and J. lounge chair purchased from Roberds. Kathy and Ken are taking Jís old lounge chair and in lieu of trying to sell the sofabed, I told J. to tell the drivers to take it -- they offered to remove it for nothing. To alleviate any confusion, I wrote a note with those instructions (take the sofa bed!) But of course, there was. In order to bring in the sofabed, they naturally had to move the dining room table where I left the note, and J. couldnít remember what I had said about the sofabed and forgot about the note. So J. called me at the office and to make a bad situation worse, I was working in the conference room away from my phone. Although I have voice mail, J. didnít understand the concept of "voice mail" and called me Four Times, yelling into the phone, "Carol, Carol, answer me" and on and on. He didnít comprehend the voice mail although he had it at SPHA on his own phone, but the concept is now beyond his level of comprehension.
Getting ready for Christmas.....I asked J. if there is something he really wants and he says "buy me some razors -- an electric Gillette and a regular one". (I guess he means a straight razor), so thatís what I bought him, even though he is afloat with razors -- disposable ones, 3 electric ones, 2 battery ones, one of each of the straight (though pricey) razors. I mentioned to Jack not to buy me two things -- deodorant and perfume because I, too, have a glut of these items. But guess what? he bought out the store on deodorant and perfume. Deodorantís OK -- so what if I already have seven from last year!! But perfume is so expensive and now I have enough to last into the hereafter (seriously!) Curiously enough, Jack labeled all his presents to me --"To Jack, from Carol".
12/22/96 - two incidents. The first: At about 9:30 p.m., J. put on his coat and went outside. And here I go again, fearing the worse, so I looked out to find out where he was going. He approached the shed outside and came back inside. When I asked what he was looking for he said "I just am checking on the bicycle" and to make a very long story, very short, I think he actually was checking on the outdoor holiday lighting. When he went outdoors toward the shed, he knew the bicycle was in the shed, but I think he actually forgot why he went outdoors. But "Bicycle" and "lighting" have a similar sounding ring (donít they?).. At least thatís what I surmised. The second: J. said to me not to forget to get garbage bags. When I questioned him (because we had a glut of garbage bags), I eventually learned that he meant "litter boxes". Similar meaning......(garbage....kitty droppings???)
12/24/96 - Saw Dr. Cohen today and am ashamed to admit that I totally lost control. I could not speak coherently without crying, and there were so many things I wanted, not only to convey to Dr. Cohen, but to ask questions and I couldnít even speak coherently. The frustration and the enormity of this problem is getting to me and I will admit that grasping at straws is becoming too much to accept. I cannot accept that my J. will never be the way he was and that this is the beginning of the end of my life with him. I just cannot believe that this has happened to him. God bless this computer, because I do the same thing when I try to talk to my friends about this. More about this later. Dr. Cohen did confirm, however, that it was still his conviction that this insidious condition was, indeed, depression with mild (HAH!) dementia which, in his opinion, could improve. Dr. Cohen at this point seemed surprised that it was my opinion that he was progressively worse. By worse I mean that new incidents continue to crop up and itís one more thing added to the already growing list of forgotten skills. They are so frequent that I am unable to write them down quickly enough, but after all, this is simply a journal for me, not a blow by blow account of inadequacies.. But he did admit to the possibility that the eventual path "could" be labeled as the "A disease". It appears that there is a very fine line between depression, early/mild dementia and finally the dreaded, ††Alzheimerís. If you read the available literature, the topics that catch my eye are:
(text from the booklet "Early Alzheimerís Disease):
∑ Problems finding or speaking the right word (see note (1)
∑ Inability to recognize objects
∑ Forgetting how to use simple, ordinary things, such as a pencil
∑ Forgetting to turn off the stove, close windows or lock doors.
Of the list above, three (3) are recognized and the only item I have not encountered with Jack is number three "forgetting how to use simple things", although at one time several months ago, he was unable to connect an extension cord with any degree of familiarity. I must say, however, that it was only that one time. It is not a constant.
Some of the incidents I have mentioned in this journal occurred once, maybe twice, leaving me on alert to continually expect a reoccurrence. This is not always the case.. For instance, Jack will occasionally forget his wallet, and I will remind him as weíre leaving the house "have you got your wallet" (mostly because he always drives and Iím concerned about him having his license on his person). When he does have it, I get the "McElroy Glare". I should look for the bulge in his back pocket and sometimes I do -- but not always. (This is a learning experience for me, too!) Dr. Cohen is of the opinion that since these are "fleeting" lapses, then the damage is not permanent, but one of anxiety (hence the depression). I must mention here that when I correct J, like a reminder about the wallet, heíll start the quick breathing... (I guess itís a form of hyperventilation?).. of exasperation, of irritation (at me, I think) and maybe, impatience with himself, as though heís saying "Oh, oh, I did it again".
12/25/96 - We were invited to dinner on Christmas with Kathy and Ken Turcotte. John Gilmore, our longest neighbor of 23 years who just returned from Maine, joined us. It was a really pleasant time and I thoroughly enjoyed not only the company, but the interaction with our neighbors that I have not sought out during these last few months, although Kathy has been there for me when I needed a good cry.. I sometimes find myself unwillingly to talk about what I am experiencing with him, because no one wants to hear your gloom and doom, but I really need to get it out and Kathy has been great about listening -- I just have to learn to soft pedal my emotions. One of the suggestions Dr. Cohen made was to join a support group. He emphasized "that although it is not clearly defined as Alzheimerís" it may help me. I donít think I am ready for that yet. Namely, I am not a joiner and am not at ease discussing my problems with others...never have been. One of my Finnish traits, I expect. Secondly, I am sure I would spend the whole session crying my eyes out (I have to work on that, for sure!) and alienating more people and what good would that do me. Finally, most meetings are at night and you guessed it = I canít drive at night. So you see, I am looking for all the right excuses not to go. I am sure I will eventually come to the end of my rope and be forced into some support group, but for now, Iíll table it until I can come to grips with my own emotions to keep them under control. I pray a whole lot for strength and emotional stability so I donít make a complete fool out of myself so often. Even when I talk with Rosie I canít discuss it totally without sounding like a baby, and God Knows, sheís got enough problems of her own.
12/27/96 - In anticipation of the carpet being laid next Monday, the 30th, I started putting stuff away and up. The big stuff can wait until the last minute, I told J. Later, I heard a sawing sound and found Jack using a hack saw, attempting to saw through metal closet rods that hold his shoes. I didnít think it necessary that they be removed -- they no doubt can lay the carpet underneath. When I told him to cease, he ignored me. I finally had to shout at him to stop the sawing. Naturally, I got the "McElroy glare".
12/30/96 - The new carpeting †††††††† will be installed today. We - Jack and I - had discussed our plan of operation, so to speak, and agreed that the cats should be housed in the shed for the day -- mostly because KC gets so anxious and fearful when there is unfamiliar activity around him and it may cause him to bolt and run. We also talked about the movement of furniture, that is, everything movable and portable on the floors, in the closets can be put up on the built-ins and the heavier stuff on the open front porch and in the carport. We shall pray for good weather! I can detect the anxiety in Jackís face and eyes. Very much like KC, any disruption of his established routine -- i.e., sitting in his favorite watching TV -- is cause for agitation. Not that he is unpleasant about it - he just doesnít know any other way to express himself. Also reminds me very much of Judy -- short answers like "yes", "no", "I donít know", and nothing added.
(Cont. 12/30/96) One routine he has established is that the minute I start preparing dinner, he immediately sets out the TV trays, draws all the drapes in the house, and in preparation for the morning routine, puts the cat food on the kitchen counter so it will be ready for the kittiesí breakfast. This one (of many) routine would take place even if I started preparing dinner at 3 or 4 oíclock. I sometimes would reopen the drapes -- I like to see the daylight -- but he would not understand that. He was simply performing one of his tasks. When I asked him to leave the drapes open until at least dark, he would immediately put on his "thundercloud" face. (*This is a throwback expression our family would use when Judy would not get her way - we used to call it her "thundercloud" face.) To return to my point of our "plan of attack" for the installation of the carpet, I could see the agitation and anxiety forming for the disruption, and it occurred to me to question if he was hearing me -- did his hearing aids need fresh batteries? He said "no" when I asked him if he had changed his batteries. I was concerned mainly because the workman would be here soon and I was also going to work. Would he be able to communicate with the workman if he couldnít hear them? I checked Jack about changing his batteries and he said he didnít change them. The workman arrive and I felt compelled to alert them that Jack does not always comprehend simple instructions and that he was impaired. They said they understood, but I left them my phone number at work. Jack is looking at me now with a strange expression (like "donít leave me") and I asked him for the third time if he has changed the batteries. No response. Now I have to get his attention so I can get through and I firmly tell him that we will change the batteries, since he now seems unwillingly to do it himself for some reason, which he is fully capable of doing. I must mention here that Jack still has his obstinate side and which, Iíll admit, Iím delighted that is not among the missing traits. When he asserts himself, I am reminded of his usual upbeat personality, and I am gratified by it, but I am brought back down to earth when I am reminded that his assertion must be quelled in an effort to bring some understanding to the situation at hand. Out of the blue, Jack then announced, "Iíll take Lucyís car". (For what, I am thinking? Why do you need to take Lucyís car....now?) .His response is a few minutes of staring (as though he were waiting for the thoughts to come out of his mouth) before he blurts out "get batteries". OH, so now itís said or what he has been trying to convey to me and Iíve been impatient. He needs to buy batteries and he knows that I am getting ready to go to work, so he knows he has to take Lucyís car. This really makes me feel contrite. I had asked him yesterday if he needed batteries and he said "no". I should have checked his case first before asking him since his "no" usually means "yes". I find that any questions asked must be qualified because his "no" may have meant "no, I do not have any, or it could have meant "no, I do not need any". This is what I have to learn and practice. One of most crucial elements of our changed relationship is to develop a common level of understanding and obviously, it has to be my adjustment to effect that change. So far, it has been the most difficult challenge to achieve and ironically, also the most difficult to accept.
12/31/96 - Today was a workday for me so I had to leave Jack with a lot of the mess to clean up, putting stuff back in its place. Sometimes "the proper place" is absent in his mind, but Iím grateful for what he does do. One of the things I asked Jack to do was to seal the bottom of the new doors. When they were first installed, Ralph noticed that Jack did not seal/paint the bottom of the door, but rather than correcting him, Ralph mentioned it to me, knowing that the doors had to come off again when the carpeting was installed. But later, I noticed that Jack had repainted the entire door, still leaving the bottom untouched. I find I must be precise and explicit when giving directions in order that I understand that he understood. An example of comprehension: Jack was making up our bed and remembered that there a dustruffle on the bed and the position of where it went, puzzled him. He remembered that the ruffles hung down on the sides. I told him that it was positioned on the bottom of the mattress, (meaning between the box spring and the mattress).
(Cont. 12/31/96) So he did exactly that -- he placed the dust ruffle at the foot of the bed, exactly what I had said -- on the bottom of the mattress, when specifically I meant UNDERNEATH the mattress. Jackís comprehension is literal and my lingo is broad. I have to learn to choose my words more carefully. You see, Jack and I are joined at the hip and usually, we read each otherís minds or finish each other sentences, but of late, our "joint" has been fractured to a degree.
1/5/97 - Today John Gilmore phoned to tell me about his experience with his bank who wants to compel him to carry flood insurance, knowing the mess I experienced with our claim, and to ask if he could have some of our pink grapefruit to bundle up for shipment to Boston. Of course, I told him to come up and take as much as he wanted. After the phone call, I told J. that it was John that called and he was coming up to get some grapefruit, which he did a few minutes later. Although I didnít specifically say which "John", J. got it in his head that it was his son, John (from Delaware). Several hours later, J. said "I wonder when heís coming?" When I asked "who?". He said "John, my son". At first, I placed no significance to his reference to "his son", but later it occurred to me that Jack thought I was talking to his son, John. (I would have thought when John Gilmore came up to pick grapefruit, the average person would have made the association between the phone call and his presence there picking grapefruit.) I then sat J. down, made him face me and told him to listen so I had his direct attention -- then told him that John wasnít coming and that it was John Gilmore I was referring to. I felt so bad I could have cried. That fact that John McElroy was in Delaware and the distance that it encompassed totally eluded J. The disappointment was overwhelming and twofold -- one, that he didnít know that he didnít understand, was just so devastating to me and two, how disappointed he was that son, John, wasnít coming after all.
1/7/97 - The Vitamin Caper. Early in the morning J. said he needed vitamins, so I gave him a coupon I had for Centrum, his brand of vitamins. When I returned from work, he told me "they" wouldnít take the coupon. I wondered why, since it was current. Later, I found a checkcard charge slip, labeled "Gateway Animal Hospital" and surmised that it was kitty vitamins he had purchased. When I gave him the coupon for Centrum, wouldnít you think that he then would have said -- "I mean kitty vitamins" ?. Or, knowing that the coupon was for Centrum (he KNOWS what Centrum is!) why did he give it to the vets? Trying to sort this out to him is an effort in total frustration and he winds up shaking his head and hyperventilating.....this is an indication to me..."oh, oh, I screwed up again (but I donít know why)".
1/14/97 - On two separate occasions I have suspected that J. was urinating outside. Last Sunday, I saw him zipping up his pants beside the camper. Today, I saw him go behind the shed (for what reason, I wondered?). Later, I saw him urinating behind the rubbish barrel. When I confronted him -- why? he only stared at me with that piercing vacant look and I had to repeat myself four times, each one louder than the other, Iíll admit, before he would say "I donít know". Sometimes I can figure out a reason of why he does some things, or why he says some odd things -- sometimes there is an association or a fleeting phase. But this is totally bizarre to me and unexpected. I never thought I would ever see the day when my J. was less than clean (I have to take his undies away so he will change them and threaten him to take a shower.)
Also, today, J. told me when I came home he had cashed in the Lotto tickets I had given him in his Christmas stocking -- $4.00 and a free ticket. I noticed that he had not completed crossing out the goop to see if he had won. When I gave him a penny to do it, he just gave me the blank, vacant stare, like he didnít know who I was talking to. I asked him if he wanted me to cross them out to see if he had won -- he said "no". When I offered the coin to him to do it himself, he said "no". To avoid me getting in a verbal go around again, like I frequently do. I just took the coin and rubbed it out -- to find out that he had won $200.! When I told him this, he was just blasť, as though it didnít mean anything. I told him I was going to check it out at the store. When I returned with $200, he just took it with no emotion, no thanks and with as little enthusiasm as if I had handed him a dime. Needless to say, my exuberance was dampened to say the least.
Now I am beginning to seriously think of me being home permanently, or placing him in day care and the latter scares the hell out of me. I almost came close today to calling a Theodore Schlofne, an attorney whose ad about nursing home and Medicaid issues I cut from the newspaper. The only reason I didnít was because I started crying (again!) and I couldnít speak coherently. Maybe tomorrow.....
1/15/97 - Jack called me up at work to day to let me know he had bought some bird seed. This is a new one -- to date, we have not been feeding the birds. Upon my return home, I find that Jack had purchased some kitty littler (bird seed, kitty litter?) - I suppose there is some similarity, but this is what J. was trying to relate to me.
1/18/97 - One of the things Jack and I had talked about doing was replacing the cedar particle board in the spare bedroom closet. He said he would do it today. (When I ask Jack to "honey, do this" and "honey, do that" (honey-dews, most commonly referred to) he is, and has always been, willing, never complaining like most husbands. Iíve always been very grateful for that) Since I was working, I didnít realize until I returned home that he only removed the back wall, not the two sides. When I asked him if he was going to remove those, he said "Sure". I said "no hurry - you can do it tomorrow". But when he set about removing the two walls, I knew it didnít occur to him to have done that first -- he thought I was being picky.
As I was preparing for work, Jack asked me if I was going shopping. I say "no, I am going to work". He seems surprised and asked me where I was working. This, coming from him, was ironic because to date, he has been telling people I worked "in a gas station", "in a car wash", etc., so he knew I worked. However, this was a momentary flash, I believe, because the next day, he asked me if I would be going to Tampa to work when Amoco moved. He remembered that, even though I told him that nearly four months ago.
Some days, (another fleeting trait) Jack is unable to find the right words to express himself and he starts stuttering and stumbling and never finds the right word. Other days, he will speak without falter and substitute one word for another, usually one that inappropriate for the theme of what he is trying to express. For instance, today he saw a news item on the TV, -- an ostrich in Ruskin had escaped from a farm and was running down Rte. 41 -- a laughable site, to be sure! But Jack referred to it as a "pelican".
1/31/97 - Visited a new discount bookstore in Pinellas Park today. As we entered the store, I pointed out to Jack that they were giving out a free 2 litter Coke for every $20 sale. Apparently, the only part of that sign that caught his eye was the word "free", because as I was at the checkout with my purchase of under $20, I asked if he had paid for it, he said "it was free". This is another "fleeting" incident. He doesnít always read what is printed.
(Cont 1/31/97) It seems that only part of a statement will register in his brainís eye. Today I pointed out a news item that said "Gateway McCroryís to close". He read "Gateway to close".
Visited Ryans tonight as per our usual habit on Friday nights. Jack becomes overly friendly with everyone there. Good interaction, I think, but one gentlemen came over, thinking Jack was singling him out and asked "where do I know you from" Jack replied he didnít know. The guy said "did you work for Barns and Allen Welding"....Jack said "yes". (????). (And of course, in our life here in St. Petersburg, he has never worked for a welding company. Apparently the guy felt a mutual bonding with Jack and he talked about some people that he thought Jack knew and pretty soon, the two were going on like lost buddies. I felt eventually Jack would get hung, but he didnít and I felt like I should step in, but I didnít (to do what?)
Jackís latest habit is staring at people. He stares so hard and so long that it is annoying to some people. His brow is furrowed -- as though if he stared hard enough and opened his eyes wide enough, he could see and hear better. One black lady at the circus was furiously annoyed enough so that I worried. (I mentioned her race only because St. Petersburg is presently embroiled in racial issues and tempers are running high and there is suspicion and mistrust among both whites and blacks.) Anyway, I saw the staring again tonight at Ryan's again. Heíll pile so much food on his plate that it overflows, (because he tries to stir everything together, the shrimp, the spaghetti, the mash potatoes but then he starts his staring. Soon, his food is cold and he wonít finish it. I can always tell -- when he brings the pizza and the ice cream to the table at the same time, I know the pizza will be tossed out.
2/1/97 - When I mentioned to Jack that I was planning to have the leftover pizza for supper tonight (we are going to Disney for 3 days on Monday) he said OK. However, when I went to get the pizza to warm it up, there was only 2 pieces, when I thought there would have been 6. Puzzled, I asked him if he ate any of it -- he said "no". But this is one of those times when I think he means "yes". I ask again, "what did you have for lunch yesterday?" He says "No". Just the tone...and the answer, I think to myself, AHA! -- he had pizza for lunch! "Jack - did you eat pizza for lunch yesterday?" "Yes", he says, "I had 4 pieces". His inability to zero in when I first mentioned that I would have pizza for supper . One previous time, he ate the entire pound of hamburg I was planning for cook for supper.
2/1/97 - Received a belated Christmas card from Steve and Diane Sozanski in South Yarmouth with a picture of Sara. Jack, however, insisted that it was a card from Peter and that Peter was married to Diane Fix and they lived in South Yarmouth. Occasionally, when the confused state steps in, I try to question him to see if it is one of those times when he is saying one thing, but meaning another, or it is one of those times when he substitutes one inappropriate word for another. But this time, Jack was adamant that it was Peter who was sending the card.
I made an appointment with Florida Dental Clinic for Jack for today.
Previously, Jack had a toothache and he went by himself to the dentist for an
extraction. I was going to be in the office at Amoco Split so I was unable to
go with him and frankly, I felt somewhat uncomfortable sending him by himself
-- not that he doesnít know where he is going -- he does -- but communicating
is difficult, not only for him, but for the person working with him.
Originally, I had suggested that he go to the St. Petersburg Dental Clinic only
a few blocks down -- 7300 4th Street -- because I had gotten a good report from
Peggy Buss about prices and services.
(Cont. 2/7/97) But when he gave me the slip, I noticed that he had gone to FDC -- no big deal, I thought. But TODAY, he pulls in to the ST. PETERSBURG DENTAL CLINIC. At first I thought maybe I was mistaken about the place but when I checked his previous appointment slip and it definitely was FDC. I told him he was at the wrong place. (This was one of his obstinate days and insisted he wasnít, but since I was the one who made the appointment, I was certain of the place.) Jack became agitated, anxious and started hyperventilating. I told him I would drive. When we arrived at FDC, I commented, "Isnít this where you came before?" He said "no". And yet it was, because they recognized him.
This experience was not beneficial for me nor for Jack, since the Clinic did not address my purpose in making the appointment, which was to get one of two alternatives accomplished. Jackís partial denture was in sad shape and I was not aware of it. Up until now, I was not in the habit of checking his dental health. Consequently, he needed either a new partial denture or a rehabbing of the present one. However, this dental group is interested only in those patients who are willing to leave their life savings at their disposal. Jack first had a "consultation" that required the services of two dentists -- one examining, and the other calculating the cost of a complete refit of the mouth. Two "evaluations" were submitted for consideration -- one costing $3,316.49; the other $3,970.25, the difference being a Super Deluxe and the alternative an Elite. Since their evaluations were not within our budget, it would appear that we were in an environment beyond our means and I would have to seek an opinion elsewhere. The next day I arrived home from the post office to find Jack talking on the phone (obviously someone had called since Jack rarely uses the phone any longer). After concluding his conversation whereby I heard him say "OK, February 19 at 1:00 p.m.", I asked him what the date signified and he said, "I have a dentist appointment". When I asked with whom, he replied that he didnít know with whom nor the address. Several attempts to questions him produced no information. Iíll just have to wait until Wednesday, February 19 at 1:00 p.m. and see who or what materializes. I tried "re-dial" to ascertain what number may have been called, but he apparently did not call anyone. The phone re-dialed the number of the St. Pete Times I had called the previous day.
2/13/97 - I noticed today that time has no significance for Jack. I asked him to reset the clock to 11:45 a.m. and he placed both clock hands on the 9. An hour later, I asked him what time it was and he told me correctly, and yet again, he gave me the incorrect time on the next day. This was a deliberate action on my part in order to determine the permanence of the time lapse -- sometimes he knows, and other times, he becomes confused and will say "I donít know" without even looking at the clock which I take to mean that either he really doesnít know, OR he doesnít know enough to look at the clock.
2/14/96 - Today is Valentineís Day and he remembered that this was a day for sweethearts and bought me chocolates and a very touching card. This has always been his mode -- he has always been a very thoughtful, caring person and has never forgotten my birthday, anniversary or other significant holidays. Reflecting back to July when we were on our trip, though, he bought me an anniversary card on my birthday. He really thought it was our anniversary and he knew that we had been married 23 years. The thing that failed him was that it was July 4th -- but he had remembered it then, too! Margaret called and asked if she could take us for lunch. Jack said "no" -- he didnít want to go. I really think that because he and Margaret had gone to lunch together while I was working, he thought that only he and she would be going to lunch. I believe he thought that the invitation did not include me and because of that, he declined. The implication did not occur to me until later
Jack and I are volunteer caretakers (on a good neighbor basis) for 8926 Bay Street N.E., owned by our long-time friend, Lucy Besley. Primarily her residence is in Phoenix NY, only occasionally returning here once or twice a year for less than a week. We check on her property daily and keep her car running. Jack is faithful about checking both. I can take no credit whatsoever for the checking the home and keeping the car running , but this small chore is one responsibility that Jack takes seriously and does without a reminder. And. so on this day, Jack said he was going out to feed the dogs (???). When I questioned him, Ďwhere"?, he said, "Iím going to feed the kitties"..(????) However, when I saw Lucyís house keys in his hand, I asked him if he was going to check the house/car at Lucy Besleyís, he said, "yes". Later on in the day, Jack asked me to put Ďcerealí on my grocery list. Knowing that we had plenty of cereal, I asked him what kind did he want to try. He ran into the back room and got the cat food container and showed me. I said "OH, cat food". He said "Yes, Ďcerealí. Close? Frequently, the mind doesnít work well with the lips and I have the feeling Jack has no control over it -- it just sort of comes out involuntarily, which may account for his answers of "no", when in fact, I know he means "yes", or the word "sure" when it is not an appropriate response... I have no other explanation. Even though Jackís responses are not always appropriate, I still talk to him and discuss the news, newspaper or neighborhood happenings; even though I am aware that most times am talking to myself because he is not focused -- so what?.....Anyway, Iíll ask him if he read a certain article in the newspaper and heíll response "sure", and as I am discussing the content with him, heíll say "No" (meaning "I didnít read it."). That is a frequent response, one that causes some confusion when dealing with someone unfamiliar to Jackís situation (waitress, clerk, etc.). Usually I have to intercede, get his frontal attention to resolve.
2/20/97 -- Oh, me! Jack is at it again, urinating in the back yard. I watched him from the back room starting to undo his pants and when he saw me, he immediately stopped, so he must remember that I told him that this was a NO-NO! I am concerning that the neighbors flanking our back yard may see him -- they have a small child 1-2 years old. As I watched him, he looked around to see if anyone was looking, so he must KNOW that this is a forbidden practice? But what he doesnít seem to realize that someone could be looking out from inside. Logic would tell you this. As I brought him in, he started for his chair and I asked him if he had to go to the bathroom -- he said "no". (Is this a "yes"?)
Today while Jack was driving, he made a left turn without waiting for the oncoming traffic to continue and we were nearly broadsided -- and then proceeding to cross two lanes of traffic to get into the right lane, also cutting in front of a car who had the right of way. I urged him to use his directional so the other cars would be aware of his directions. And although he did use them on the way to Ryan's, he completely forgot it on the way home, an hour later.
I also noticed today several recurring habits that may fall into the category of OCD.
†††† 1. † Knocking on things as he is walking - wall, cabinets, doors, vehicles (he sets off a lot of car alarms in parking lots!)
†††† 2. † While in his lounge chair, he continually picks up and folds his arm covers.
†††† 3. † The continual "humph" sound (I have timed) at every 15 seconds.
Although he reads the paper, he will linger on the same page for well over an hour which indicates to me that he is no absorbing the material. He did, however, comment on one article which (briefly) chronicled the life of Singleton, a man who raped and maimed a girl 15 years ago in California, and only 2 days ago, repeated the act but to include her murder.
(Cont. 2/20/97) However, Jackís interpretation of the article was to comment on Singletonís release from 15 years ago. He didnít absorb the remaining material. If he picks up a magazine to read, he will just turn pages, without even scanning the page.
I noticed that his hearing aids were sticking out like "wings". This usually means he hasnít got them in correctly, or that he has switched the right and the left. Sure enough, he has switched them again. At our last appointment, Mr. Robbins placed a red dot on the right one so they could be identified. When I told him about the red identifying mark, he was surprised as though he didnít know about it. And I will have to tell him again, when I see the "wings" again.
2/20/97 - At our first appointment with a Dr. Nunios, Jack was evaluated and subsequently rated at a MMSE 16 (Mental/Memory/Something/Something). Dr. Nunios said Jack was definitely a victim of Alzheimers. The quoted rate of 16 and the deterioration at such an alarming rate was considered severe. The evaluation was determined by a private visit with Jack during which he was asked a serious of questions (4 pages). I was not interviewed alone but later with Jack present. The only questions presented to me were in the nature of when this began and what symptoms I observed then, as compared to now. When I questioned Dr. Nunios about Dr. Cohenís diagnosis of depression and mild dementia, she said it was her opinion that Dr. Cohen was treating Jack for depression, when in fact, the depression occurred because of Jackís inability to remember and function normally which created the depression. Sort of backwards, I would say. At the last appointment with Dr. Cohen with me only, he did admit that Alzheimer's was probable. Dr. Munios said that Jack would be considered a suitable candidate, but to check it out with Dr. Cohen and inform him that we want to participate. In addition to treatment for Jack, Dr. Nunios said that they is support for the caregiver as well, since it is a part of their research as well.
One of the questions asked of Jack in my presence was -- are you still driving? To date, I have been remarking to those close to me that his driving skills were not impaired and honestly, except for a careless incident a few days ago, he still is like a homing pigeon -- knows his way around, is a responsible driver and neither a speed demon nor a straggler. However, in this instance, I was not consulted nor questioned. Dr.. Nunios said to Jack, "you should not drive any longer". This was "end of conversation" "period". I have mixed emotions about this. I guess I have either waited for someone else to say it or I have reluctant to do it myself -- this way itís done and I donít have to be the bad guy. And I really felt in my heart that I was just putting off making a decision about this. But what if something happened....what about delayed responses like waiting at the green light, etc. Etc. Etc. Because I have the been the disciplinarian, so to speak, I didnít want to be the one to take away this -- itís just so final and the end of one more thing. Jack accepted it and when we were preparing to leave, he climbed into the passenger seat. When I asked him if he understood why this was necessary, he said he did, but felt strange not driving like he always did. I said "well, honey, you drove me around enough, now itís your turn to enjoy the scenery".
2/21/97 - Appointment with Dr. Cohen. His opinion (fostered by my insistence) is that Jack is somewhat worse. We spent a total of 15 minutes with him during which time he asked Jack to remember "Blue", "33", and "airplane". He made Jack repeat them. Less than five minutes later, Jack said "green", "blue", and "33". Various other questions that Jack could not answer left him in an agitated state, clenching and unclenching, quick breathing. Dr. Cohen said to curtail the Prozac and make an appointment for 2 weeks, at which time he will prescribe another newer drug.
(cont. 2/21/97) When I asked Dr. Cohen his opinion about participation in the Clinical Research group, he asked "why" ( and I got the feeling he was not pleased with this bit of news -- maybe understandably so) and I told him I wanted to explore every avenue for Jackís condition. His reply was that "they" (meaning Suncoast Clinic) did that sort of thing there, too. Except for 4 - 15 minute appointments in the last year, I have seen nothing else in the form of counseling, or at least nothing that has been discussed with me. Dr. Cohen also mentioned the driving and concurred with Dr. Nunios that he should no longer drive.
2/25/97 - Our A/C decided to break down today. Jack called Walter Burd and without telling him his name, Jack just said "my heatís on". To make a v-e-r-y long story short, he just couldnít communicate with Walt and tell him what the problem was. Walt had told him to remove the a/c cover and reset the reverse. Of course, I know nothing about this lingo, so I let Jack go and remove the cover -- it was the wrong cover he was trying to remove and I wound up having to call Walt back and tell him the story. He was a little irritated that Jack couldnít convey -- or didnít convey -- the correct situation.
Hereís a peculiar twist. Walter Burd came with his son, Richard, who helps him on occasion since Walt is semi-retired but takes care of his old customers. Jack had remembered that we had bought our very first camper from Richard Burd -- around 1978, I think. And now because we had decided to sell the camper, Jack seemed to think we had to give THIS camper back to him. Richard, being the gentleman he is, declined Jackís offer to TAKE the camper.
Although Jack is not completely comfortable with my decision to sell the camper, he has accepted it now that he has been told he cannot drive. When we tried to open it, the gears to crank it up to open had frozen. Iím sure the flood of 10/7/96 rusted it to bits, but I never thought to check that part of it. We did open it up after the flood to see if any damage had occurred inside and it was dry as a bone. Jerry at Arrow Camper said he would rebuild it with a used part and charge us about $100 for the work and parts. Then itís for sale.
2/26/97 - I had difficulty today trying to explain the TV remote control to Jack. Suddenly, he is confused by this "black thing" (as he refers to it). When I explained the up and down arrows to him, he was elated, and just kept zinging it up, up and then down, down, down, never stopping. Lately, he seems perplexed about the TV guide in general -- doesnít know he has to turn to the right day in order to find the programming for the day. No amount of explaining seemed to help. I keep forgetting that he forgets! And I try to re-educate him. I have to change my entire way of thinking and try to put myself in his shoes. Itís hard, but I cry when I think how confused HE must be and frightened, maybe. Conditionally, he appears content and happy, but sometimes I see that confused look in his eyes and it just tears me up.
2/26./97 - Re: the remote episode of yesterday -- it was as though it never happened. Today all memory of the use of the remote control has been restored. Thank God. However, not so with the TV guide -- that still is a mystery to me. He thinks that if he looks at the page, it will tell him what he wants to know. Similarly, when he goes to a fast food joint and he thinks the server knows what he wants as long as he smiles and looks at her. Gives me a giggle......until I get my body over there and try to find out what he wants -- then the server knows and he knows!
3/5/97 - Took Jack to breakfast at the Dome Grill today. When he worked for SPHA, he occasionally would sneak off to the Dome Grill for breakfast when he had a late appointment so I thought he might enjoy a leisurely breakfast legitimately.
(Cont. 3/5/97) First, ordering is a problem for Jack. I donít know if he get tongue tied or anxious or what, but telling the server what he wants is difficult for him. He just smiles, and thinks his order is going to
leap out at him because the server is reading his mind. When I try to intercede, he becomes anxious when I ask him what he wants. He then knows that he has to do something (because Iím talking at him), but he doesnít know what. He doesnít seem to be able to concentrate and respond to what I am saying. Secondly, while I was in the restroom, he took it upon himself to take someoneís elseís order. (This place issues a receipt and when ready, announces the order number over the public address system to be picked up at the counter.) Jack remembered the part about picking the order up at the counter; but he forgot the procedure of the announcement and presenting your receipt. So there was an irate customer looking for his order because it had been announced, a confused server because he had announced it and it was missing, and I was running after Jack who was headed OUTSIDE with the tray. I knew it was not our order, because there was grits on the tray! YUK! I guess Jack also forgot he hated grits!
Today was also the day for a visit with the new dentist, Dr. Ferullo, although today Jack was seeing the hygienist who was Dr. Shevockís daughter, Shelley English. Jack started hyperventilating almost immediately. I think because the place was unfamiliar to him and I believe he had forgotten that he, in fact, was seeing Shelley. Because it was our first visit to Dr. Ferullo, we had to complete a New Patient Information Sheet. Jack insisted upon completing it, although I knew he was in an anxiety panic. He asked me our phone number and his date of birth, although he knew his SSN. However, the remaining information which asked about employer data (which in our case was not applicable), he wrote "9015 Bay Street N.E., Petersburg FAL 33027, five times. In addition, he had spelled my name as "Calar", so unlike him as he always excelled in spelling and proper English. One question asked, "Relation", Jack had written "FIVE", meaning "wife". Under the question that asked "why are you here", he wrote "No". Much of the remaining questionnaire was similar. After his cleaning with Shelley, she handed me a card with her phone number on and she mouthed Ďcall meí. When I called her, she referred me to a friend of Dr. Shevockís --a Dr. Floyd Thompson at 1506 54th Avenue N. We went to him to have Jackís chipped front tooth and I believe we have found our "Dr. Shevock" once again. I was very pleased and Jack was comfortable with him and it didnít cost us the price of a Mercedes for some dental work.
3/22/97 -- 3/23/97l - We had our neighborhood garage sale Saturday and Sunday and GAZOOKS...we sold the camper for $1500. And cleared another $130 on other stuff. Although I like to walk around the neighborhood to see the other stuff, I was hesitant to leave Jack alone because of the communication fluency. People are impatient if they donít get the answers they want and sometimes the words are difficult for Jack to form quickly. It starts as a stutter and then doesnít finish (but he thinks he did).
3/26/97 - Today we had an appointment with the Suncoast Research Study group whose current research is with memory loss and Alzheimerís. This
initial visit included a physical by Dr. Cohen, the perusal of a l0 page disclaimer which we both had to sign, and an in-depth discussion of what to expect from this study that we will participate in. Tomorrow Jack must appear at the laboratory for a urinalysis and blood recap. Karen Cohen (I wonder if any relation to Dr. Cohen?), Suzanne Klinkenberg and Mary Ann Cohen, head the research team. Jack and I will be in weekly telephone contact with the research team and a written daily log of medication and reactions will be kept and reported.
(Cont. 3/26/97) The test will run for 72 weeks (lĹ years). Jack will be the guinea pig, so to speak, for Exelon, taking it twice a day with a full stomach, with me recording reactions, if any. I am hopeful -- not that I expect Alzheimerís to disappear, but perhaps an improvement or delay in memory loss, so Jack can live more comfortably or less anxious. Although I have said before that Jack appears content and happy in his own world, he does have anxious moments when he is confronted by some technology and becomes fearful and anxious. I guess I want to eliminate those anxious moments for him.
3/27/97 - Jack and I went to the Suncoast Medical Clinic laboratory for a urinalysis and blood test at 8:00 a.m. Since Jack had to fast for the lab tests, we went to the Dome Grill for breakfast. Since Jack has had this memory loss, his appetite has been insatiable. When we returned from the Dome Grill, Jack consumed 5 donuts as well. It was pointed out to me that it is also due to memory loss -- not appetite. Unlike the rest of us, he simply forgets that he has eaten recently.
3/28/97 - After a roast chicken dinner tonight, I asked Jack if he wanted seconds. Of course he said "no" like he always does, so I told him that there was only a small portion left and not enough to store for leftovers and did he want more? Again, "no". I, on the other hand, wanted more sweet potato salad and slaw so I went to the kitchen for it. When I returned, he looked at me strangely, and said icily, "then I guess Iíll have to get my own chicken". I have ceased saying that he told me "no", when though, I KNOW he means "yes", because he becomes agitated and shakes his head, as though I am demented. Am I, I ask myself?. (Patience, Carol, remember what Mazzarella told you!)
3/29/97 - Right after supper, Jack mentioned that he has lost his "gas". Not having a clue as to what this "gas" was, I questioned him more -- what gas -- what is your "gas" -- . And he continued to look around the house for more than an hour. Although I helped, I had no idea what I was looking for, and he continually kept referring to it as "gas". The next day, Jack produced his "glass case". (GAS - CASE -- although it does not sound alike, it does have similar spelling, or it is a combination of "glass" and "case" = GAS?. This is the only clue I have concerning the similarity he may make about some item or phrases. Alike, and yet, not alike.
Jack seems to have a fetish about the cats staying in. Of course, they both love being in the screened porch. I guess itís second best to being outside and they have a birdís eye view of the bird bath where all types of bird fly in and out all day. This is their entertainment. But the minute they are out there, Jack is yelling out the door to come in -- even though I may have let them out moments before. I donít know why he wants them in -- I havenít figured this one out yet. I can usually find it, but this may take some time.
In addition to the above, he also is eager to tuck us in for the night quite early. If I begin to prepare supper at 4:30 pm, he immediately starts to draw all the drapes, close the windows, lock the utility room door, and put on his pjís. We usually eat around 5, but lately, I try to start supper later in an effort to postpone the "closing up" syndrome. I really am looking forward to daylight saving time -- itíll give me a few more hours of daylight (I hope). I have told him, however, that when he has his pajamas on, he cannot go outside anymore. If he wants to go outdoors and water or check his plants, he must be fully dressed. Although this seems picayune, I do worry about the neighbors and want to maintain normal behavior appearances
Sadly, people (neighbors) are funny and I know a few of them are aware of Jackís dementia. I donít want to say "I donít care what the neighbors think", because in fact, I do care. If you arenít entirely uptight, normal USA American style, odd behavior patterns sometimes can create problems. I want to avoid that. I do not want Jack to be the cause of talk nor looked upon as an oddity. Similarly, nor do I want us to have to guard against any action neighbors may take. (You see, I worry if anyone has seen Jack in the backyard relieving himself. The camper is gone now, the place that he used to hide and pee..........) So weíll have to be uptight, normal American style people, regardless, if I have anything to say about it.
3/31/97 - Most recently, I had given serious thought to selling the house. First, it is mostly due to the fact that itís inevitable that weíll have repeat flooding. Do I want to go through that again? I donít know... I must weigh this with the fact that we are in a nice, friendly, safe neighborhood. Secondly, our taxes (over $600) and now an increase in flood insurance ($700) and the insurance on the house ($400). I also weigh this against paying a monthly maintenance assessment at a condo somewhere at $100 or less. And finally, and most important, staying here has some familiarity for Jack. As I said, we have neighbors that look out for each other. I seriously doubt that Jack would be content if he couldnít walk outside to tend to his garden or pick his fruit, or even take a walk up the street, which at this particular time, I donít have a concern with. In some other place, I doubt I would be that secure in my thinking. So for now, Iíll stay put. Today is Easter Sunday, and I spoke with Monty. He seems to agree with me and suggested that I not make any serious moves right now. Who knows" I may need the proceeds from the sale of this at some future time. A condo does not have the salability that a home in this neighborhood has. I should bookmark this section of my log to re-read this synopsis that I have jousted talked myself into. In the future, when I entertain these misgivings and doubt, I may need to reinforce my thinking once again, because I know Iíll be doubting my decision over and over again.
4/1/97 -We woke up to a cooler-than-usual 60's temperature and, although it was not really cold, it sure seemed like it as Jack had all the windows and doors open and all five fans in the home on high! (I knew he would become confused if I mentioned it or even closed the doors, I just put my heavy robe on. To "do", or not to "do", that is the question...... However, later on in the morning as it warmed up, he closed all windows and doors and put the heat on. This time, I did tell him that we didnít need it, and I think he does not trust his own judgment about hot and cold temperatures. Although he knows hot from cold, he does not how to apply the means for alleviating it when setting the thermostat. When we have the air on, he sets the thermostat at 65, and subsequently when itís heat, he sets it at 85. Like so many other things, his judgments seem to spin in reverse. I believe he was doing it for me, since he saw me in my heavy robe.
Also, today I heard the weather news from Monty. They have had a blizzard to beat all blizzards, with a range of changing temperatures from 32 when it snowed, and then rose sharply up to 45 and it started to melt, and then dropped suddenly to 20 within a matter of a day and a half. Monty was comical while telling me the mishaps this storm created. He said the icicles started to melt, then froze, which made the icicles real long hanging off the house eaves. Later when the temps dropped and everything froze, the winds suddenly picked up to 50 mph and those long icicles turned into bullets, flying around and beating up on the house and windows. April Fool!
4/1/97 - We went to the Gulf Coast Factory Outlet with Lucy Besley today. Although it was a little cool, it was pleasant. Jack had on shorts, but put on his winter jacket. A strange sight in Florida. If youíre cold, youíre cold all over - right? I told him that if he was going to wear the jacket, he should put on long pants. It was a sulky day, though, and he was not to change at all. Maybe he had the right idea after all. When it was really warmed up, all he had to do was take off the jacket and he was already in shorts. Oh, well....
As we were leaving, Jack asked me if we should do "fan". In the majority of inappropriately used words, I sometimes can decipher what he means, although he is not aware that is not communicating properly. He looks at me as if I have the impairment. (This disease does have its giggle moments and I seize upon them!) But in this case, I was at a loss. However, he used a gesture as though he was rubbing something, and then I knew he was trying to ask me if I wanted him to rub my shoulder. I had been experiencing a stiff neck for the past four days and he had been rubbing me with Ben Gay ointment. Fan? Rub? Donít know this one.....
During our shopping trip, Lucy confessed to me that Jack acts like her Lew who, for the past 9 years, also suffers from Alzheimer's. However, like us, her doctors have refused to specifically acknowledge Alzheimer's, and diagnose his ailment as dementia. Later this evening, I read a brochure about "how to tell if itís Alzheimer's", and the material includes all the diagnostic tools available, and the tests suggested. However it further summarizes by stating that there is no diagnostic tool available to conclude an exact finding of Alzheimer's. It is simply a physicianís judgment call, based upon the testsí results which may or may not always be conclusive. It will be the culmination of all the tests that will lead the physician to make a probable diagnosis of: ņ memory loss or depression, Ń mild dementia ¬ and when the situation becomes totally bizarre and close to institutionalization, it becomes Alzheimer's. I have become very vocal about Dr. Cohenís hesitancy to diagnose (not to him, however) and now I really feel bad about it. However, I do wish that he had told me exactly that. I naturally would bristle if I felt that he was being less than honest with me. Now I see another point of view.
4/3/97 - Today we had an appointment with Suzanne Klinkenberg, research technician at Suncoast Clinic and she gave us our first 20 pills (1.5 mg each) to begin Friday, 4/4/97. She will call us on Tuesday, 4/8 for a progress report, as I am to keep a daily chart. . Our next appointment is 4/17 when we will pick up the next pill bath increased to 3.0 mg each. The initial expectation is to delay any further memory loss and to sharpen motor skills which have been lost.
4/6/97 - So far Jack has been on the pills for three days now and I have asked him if he has had headaches, stomach aches or a change in his bowels. He claims "no". Last night I saw a little irritation from him but perhaps well deserved. I always seem to be giving orders or telling him "no". Even though I try to cushion it with "shouldnít we do this" or "maybe not" , but Iím sure he must resent it. I would if I were in his place. I even try not to jump in too soon that maybe this time he will know what to do, what to say, but anticipation in this game is 50% of the battle in trying to keep things together.
Keeping Jack occupied requires a little ingenuity. He seems to enjoy "going" -- just anywhere. And I do, too, but there are some days when I just donít want to or canít go. Today I had severe burning in my chest and although it is probably my chronic indigestion, occasionally you do have a fright and wonder if itís the start of a heart attack. Who knows.... but I give in to it. But today, Jack wanted to go to "Sesame Street".
(Cont. 4/6/97) Actually, he always knows exactly where he wants to go, but has difficulty in expressing himself for me to know where he wants to go. Generally, I can usually question him and find out...but it takes an enormous amount of patience and time.....".patience" from him, not me. He becomes agitated when I question him. When I just drop the subject after some initial questioning, it may come to him later -- maybe as much 30 minutes later. It must take a tremendous amount of mental concentration for Jack to hone in on this thought and come up with what he wants to convey. Consider first, that his affliction is Memory Loss!
Additionally today, another exercise in "guess what I want". Since I had already declined to go to Sesame Street (we never did define this one), he asked if I would take him to Home Depot for him to purchase some "sand filters". Not knowing what he meant, I asked him to show me what he wanted to purchase and he led me to the litter box. Now, think about this.....is not "sand filter" by far a better description for "cat litter". I think so! I think this is an ingenious word, but sadly, he has forgotten that directly next to the litter box is 2 full pails of cat litter so I told him we would go another time.
4/8/97 - Today was one of those "final" days -- another "taking away" of something else that can never be returned. In this case, it was Jackís dignity.
Since the camper has been sold and transferred, we had to turn in the tags to the DMV. Since I have always had Jackís protection taking care of the "legal" stuff, we headed out to the County Building at Jackís insistence. Although I doubted that this was the proper place for us to turn in the plates, what do I know? I prayed that this was one of his more "aware" moments and that he was correct. However, he became impatient and said we needed to go to 6th Street (when we were on 4th Street N.), so I turned and headed west abound to 6th Street. When we arrived at 6th Street, he lost patience again and say, "no, 1st Street". Now I knew there was nothing on 1st Street that resembled any sort of DMV, and wondered if he meant the AAA Building, and he said "go to 9th Street" and confirmed that he meant AAA. Ironically, AAA referred us to DMV for this type of transaction. Up we go to Town Plaza on 62nd Avenue and 21st Street. (Maybe thatís what he meant -- 1st Street ??? 21st Street???? -- similar.) While we waited to check in with the receptionist, a uniformed clerk beckoned us to his station. However, the receptionist halted me and told me I had to remain in the waiting area and only Jack could approach the clerk. When I explained that it was necessary for me to translate for Jack, she asked "did he speak a foreign language" and if not, I had to remain in the waiting area. I explained that he was impaired and may not be able to express himself, she asked "Impairment? What impairment?" I said he was mentally impaired and suffered from dementia and was not able to express himself clearly. "Sorry", she said, "If he can speak English, Iím sure theyíll understand. SIT". After about 15 minutes, an officer beckoned me over. Incensed that I still was, I asked the rude receptionist for "permission to approach". I was ignored. (I felt like I was facing Judge Wapner!!!) The officer asked me "what does this man want and did I know he didnít know what he was talking about and what was wrong with him -- was he on medication and what is he taking -- and was he driving now and I am giving you a paper to take to his doctor for a health examination so Jackís license could be revoked and he was never going to drive again! All this in an angry tone and spoken in one long breath, as though he were telling me something I didnít know. His outburst (quite loud for everyone in line could hear I explained that Jack was NOT and HAD NOT driven for some months, even though I had not made formal notification to the DMV, and YES, I was aware of his dementia. When he heard this, he then offered to do the paperwork immediately, in lieu of a physicianís signature since the act was voluntary
(cont. 4/8/97). Why donít people listen? Why arenít they taking the diversity classes I had to take? The officer further asked if Jack would understand what was taking place if he (the officer) explained to him that he was canceling his license and he would no longer be permitted to drive a vehicle. In my very best tone CONTROLLED voice (even though I was already crying but I had my sunglasses on) I told him he should try. In the best of circumstances, itís been my experience that Jack does not ALWAYS understand -- but then, at times, he does. So itís a crap shoot, so to speak. The officer motioned Jack into his office - alone - so I have no idea what was said. Later, I asked Jack what the officer had said to him -- he replied "I donít know". I asked if he understood what the officer said and he said "yes". Jack was very quiet, so I believe he did, in fact, understand, but I think his dignity was raped. Had I been allowed to accompany Jack to the desk to explain our business, no one else would have been involved nor been privvy to Jackís inability to talk coherently; specifically, the receptionist, the officer and now all of those within hearing distance were poised for a little excitement in their obviously mundane lives. (Pardon the sarcasm!) Prior to our initial entrance to the DMV, a very angry and upset young lady was exiting, using very loud, unrepeatable street language. While I do not know what her problem was, I think she may have set the tone for the scene when we entered and everyone may not have recovered from her behavior. Too bad...they all should have worked at the Housing Authority, where this is a constant atmosphere, but we had been formally trained in courtesy and patience. Obviously, the employees at DVM are unable to isolate and put each episode in perspective, in order to assist the next client. A "carryover" attitude was clearly in place as we entered. Further, It is very apparent that either the organization is lacking in in-service training to deal with the public or that there is a severe hearing problem. While I realize that the license revocation was necessary, I resent the manner in which it was done, lacking compassion and courtesy, not only to Jack, but to me as well.
I am beginning to understand some of Jackís moods, or at least the reasons for them. (I have always been a "show and tell me the reason" kind of person, when attempting to solve a problem.) Jack has always been a perfectionist, bordering on obsessive. Not only did he demand it from his students, his children and mine as well, it was also self imposed. Now despite his handicap, he still maintains his perfectionist traits although he knows he is unable to fix or control it. He knows that everything is not in place like he would prefer it to be, and I believe that frustrates him. Equally frustrating to him is depending upon someone else to interpret his needs, which he finds difficult to translate into words.
4/9/97 - There seems to be one crisis after another, and recently they all seems to evolve around water. A representative of the water department visited and checked our meter and determined we were losing approximately 2/10ths of a gallon of water each hour. Letís see -- 2/10th x 24 hours x 30 days (before the next bill, that is) amounts to about 5 gallons a day or 150 gallons extra per month. Our average usage is between 95 and 115. I immediately called Ed Delaney, a plumber who lives around the corner from us. Initially, we were unable to locate the turn off for the house which would zero in on where the leak was -- either from the house to the main, or inside the house under the slab. Dear God -- please not under the slab! While he was here, I asked him to repair the toilet which has been leaking since Jack had installed not one, but four new floats, and take a look at the faucet Jack had installed, also not working correctly. Jack must have misinterpreted what was said about the faucet, because on..............
4/10/97 - Jack proceeded to clean out under the sink to change the hot and cold water lines.
(Cont. 4/10/97) Even though I told him it was not necessary, he went right back at it, when I went in the bathroom. Three times I had to insist that he leave everything alone -- that it was OK. Jack then started digging next to the meter, since I had thought that (??? What do I know??) the house shutoff was located nearby under the kitchen window, I suggested that he begin digging near the concrete apron. Now found, the shutoff for water to the house is located under the window, but the water leak was discovered nearer to the meter, so Jack had to dig all the way from the house to about 5 ft. Away from the meter. But God was with us -- the leak was NOT under the house, which if it had been, would have required that the concrete slab would have to be penetrated with a jack hammer and all I could think of was the newly laid ceramic tile and the new rug just replaced.
Later in the day, Jack told me that Ed Delaney had told him to shut off the water. ???? I had not seen Ed here (although Jack insisted that Ed was HERE, when clearly he was not) nor did I hear the phone ring, so I donít know what Mr. Delaney had said, but Jack proceeded to make a pilgrimage out to the street water shutoff every hour, shutting off and turning on, shutting off and turning on, but he refused to turn it on when I had to do the dishes. ???. Iíll wait until tomorrow. I have a HEADACHE.
In a prior statement, I said that I think I am beginning to understand Jackís answers of "no", when he means "yes". He also says "hot", when in fact, he means "cold". This may sound very simplistic, but it appears that his brain reacts in reverse!!!! If you ask him to turn something ON, heíll invariably turn it OFF. He reverses HOT with COLD. (Now I know why he turns the thermostat to 85 when the heat is on, and to 65 when the air is on.) This became evident when Ed asked Jack if the water was ON, and Jack opened the faucet and no water came out, and said "YES, the water is ON, when in fact, it was not. This is what makes communication difficult. If you ask him what he is eating, heíll say NO, I am not eating. Recently, one of the doctors asked him if he were ever called "Jack", although his given name is John, and he replied "NO". Other examples that Jack invariably seems to reverse are:†
∑ hot† ††† cold
∑ open †††† shut
∑ left †††† right
∑ soft †††† loud
∑ on††††††† off
∑ slow ††† fast
I now know what is meant by short term memory loss. I was either unable to sort it through or too impatient to thoroughly to realize the implication. For example, while trying to disassemble the kitchen faucet, he would forget one step in sequence. In this particular instance, he forgot to shut off the water before he dismantled the faucet. Consequently, the water shot from the top of the faucet like a fire hose
4/13/97 - When I awoke today, it was raining, but Jack had the sprinklers on. They are not set for an automatic timed watering since Jack sets the clock manually. Reminding him that it was raining, he appeared confused, clearly not comprehending that since it WAS raining, the sprinklers were not needed. When I asked if he were going to shut them off, he said "no". I guess Iíll have to read up on the operation of the sprinklers, since Jack always took care of this, too. Although it is simpler not to specially ask -- but just do it, I have to admit that I am ignorant about some tasks in this house, and this is one of them.
4/14/97 - I canít say that I see any difference in Jack since he has been taking the medication. When I asked Suzanne Klinkenberg just what I should expect, she answered me very cautiously.-- that he will not get any better, but the Excelon may limit any advancement of the disease. In other words, it is possible,(but not probable) to expect that Jack will remain as he is. I am hopeful about that. I hate to admit to myself, much less to anyone else, that I am afraid. Of many things, actually. One - am I capable of sufficient patience to make him comfortable with himself, since sometimes he really does know that heís doing something wrong, although I try to allay his fears.. Two - do I have the stamina. Even now, sometimes I donít -- what will I be several years from now if and when he gets worse? I abhor the thought of Jack becoming any less that what he is. It isnít that I mind taking care of him, but it literally tears my heart out to see him a shadow of himself, and how can I live with that. Thereís a tremendous amount of guilt Thatís a selfish viewpoint, I know, and I have to somehow overcome this, because Jack appears to be a content and happy person. HE doesnít know that he has difficulty expressing himself. HE thinks that there is something wrong with YOU when you (for instance) tell him to shut off the water in the sink that he just walked away from. He has that puzzled look as if heís trying so hard to understand "sink"...what is SINK?
4/17/97 - Referring back in this text to inappropriate words, I get a giggle out of some of the phrases that Jack uses, because in most instances, the words Jack uses sometimes make more sense than the given. Today Jack asked me for "ear pills". Before I question him, I force myself to think because he sometimes hyperventilates if I donít know what he means and he becomes anxious and irritated. I guessed it! Jack was asking me for batteries for his hearing aids! Now, I ask you -- is "ear pills" a more fitting description? I think so.!!!.
4/17/97 - Another visit to the Medical Research Group. To date, the doses of Excelon have increased as follows:
†††† 1.5 mg - April 5 - 10, 1997
†††† 3.0 mg - April 11 - 16, 1997
†††† 4.5 mg - April 17 - 29, 1997
On our next visit on April 30, 1997, the ultimate dose of 6.0 will be administered and Jack will remain on that dose until whenever. The length of this study is for 72 weeks (1Ĺ years) and depending on the progress, or lack thereof, will determine the length of the study for Jack.
April 24, 1997 - The news today, both in the paper and on the television, was about a breakthrough on Alzheimer's. (See news articles - 4/24/97) It details the use of daily, megadoses of Vitamin E and the drug, celicitate (already in use) to those at risk and claims to slow down by 5-7 months those symptoms that may require institutional care. Somehow, this is not exactly exciting news to me. Later on the GMA program, Dr. Tim Johnson, a renowned physician, downplayed this latest discovery.
Dr. Johnson stated that celicitate has long been in existence as a tool in treating dementia as has Vitamin E. In his opinion, this "news" was released by a pharmaceutical company to parlay a "breakthrough" solely for their own promotional purposes laying claim to a new discovery by deluding the public into thinking that this was "Ďtheir" discovery. To those of us who are coping with a living death, this farce for private gain is a cruel hoax. In addition, he said, it also may provoke a healthy person into consuming massive doses of Vitamin E, which in fact may be harmful. It is well known in medical circles that great amount of Vitamin E produces bleeding, but that information was omitted in the press release promoting Vitamin E and celicilate.
4/26/97 - After I had set up a video tape, I asked Jack to hit "PLAY" to start it. As experienced before, he appeared to be baffled with the word. If you think about it, the word PLAY to Jack and others like him, probably is significant with his early memories of PLAY being, tag, marbles, ball, i.e. recreation, but hardly synonymous with technical equipment. Interesting........ Even the indicators with graphics, such as FORWARD>>>>> BACKWARD<<<<<< , do not seem to trigger any recognition, as they may to a non-English speaking person, although he will press them in rapid succession in hopes of finding the right one.
4/26/97 - During preparations for Italian spaghetti for the next day, I baked 18 meatballs in the oven so I could drop them in the sauce. However, when I took them from the fridge, I only had four in the dish. Jack told me he had eaten them. He does have a ravenous appetite and consumes large amounts of food not only at a scheduled meal, but snacks continually as well. The particularly hypocrisy of this is that he gains not an ounce (much to my chagrin since I am seriously overweight!) and presently, his physical activity is somewhat less than when he held a full-time position. Since Jack is involved with a research study, his vital signs are checked periodically (every two weeks presently) and his general health is monitored, so I guess I shouldnít worry about this oddity.
4/30/97 - A scheduled visit to the Research Center provided Jack with a check of his vital signs, my interview of observations. One of their concerns was that Jack experienced a spell of diarrhea and I had administered 2 does of Imodium AD to correct it. Inasmuch that this was an unforeseen occurrence, they delayed giving Jack the ultimate dosage of Excelon of 6.0 mg. until the next visit. I experienced a crying jag while being interviewed by Suzanne Klinkenberg. Geez, when will I learn some self control? When I feel this coming on, I steel myself and say a quick prayer. Sometimes it works and sometimes it doesnít. Maybe sometimes I have forgotten to offer a prayer of thanks for the previous times? Once again, however, Suzanne suggested that I seek day care for Jack. This suggestion is aimed at my well-being, Iím sure, and I appreciate their concern. However, I still balk at any action of this type. Not only am I not ready, I really donít think that this is any solution for Jack. Since Jack is not totally senile, he would know what "place" this is. Additionally, I feel that Jack can be just as happy watching TV here as he could at any daycare center. At least here, he is free to roam outside, tend his garden, walk up the street, survey the neighborhood per se. Several years ago and before this memory loss occurred, Jack asked me to promise that I would never place him in a nursing home. He is still bitter about his motherís entry into the nursing home and he was helpless to prevent it, since it was a family conclusion. I often think about his request and wonder if he was experiencing any deficiency then? And although I pooh-poohed his request, and did not promise him, I guess in my heart, I feel some obligation to grant his request, although unspoken.
4/30/97 - Jack noticed in the newspaper that there is a warthog exhibit at the Lowry Park Zoo and I mentioned "casually" that we should go there again. Later in the day I heard from Lucy Besley that Jack had told her we all (including her) were going to the zoo tomorrow and I would be purchasing the tickets at AAA. (???) So I did, and we did...... In his mind, he may have forgotten that we did not thoroughly discuss this, or he may have thought we did.
5/1/97 - I noticed Jack had placed a plastic pail under a leaking sprinkler system valve. I called Bruce Kerekes, the original installer, and he replaced all four valves and fixed several leaks by digging several feet under the existing sidewalk ($80.00 - cheap enough.) Additionally, he instructed me to contact the City, since we were not receiving sufficient water pressure. This is not a serious issue, nor did it cause me any concern since it is a frequent occurrence to have to physically pull up each sprinkler head. It did, however, bear checking out on Bruceís advice.
On 5/2/97, maintenance men from the Recycled Water Dept. arrived to determine the cause. I did not hear the conversation between them and Jack -- I should have made myself available -- but Jack told me that we had to pay for a connection from across the street -- a 1Ĺ" pipe extension -- to our house. Since this is city property and their system, I doubted the veracity of the information and called them. I am waiting to hear the outcome of that scenario. I called a Ray Bodner at 892-5660 who said he would get back to me about the outcome of the Water Dept. Visit. To date - 5/13/97 -, he has not yet done so. While I detest having to horn in on every conversation he has, I need to keep up on whatís going on. Not only does he misinterpret information, but he makes promises without my knowledge. Communication problems are the worse, Iíve found..
5/3/97 - Something has upset Jack today and I havenít yet figured what that "something" is. Jack asked me to take him to Southern Industrial Supply to purchase three (3) sprinkler heads. I think that when the City was here yesterday, someone must have pointed out to Jack that three (3) sprinkler heads adjacent to the carport were defective. He got really angry with me -- very unlike him -- when I asked him which ones. I believe he becomes frustrated and impatient with himself when he is unable to solve a problem and resents my interference when I ask someone to help. Thatís not hard to figure out. My heart just bleeds for him -- this is one of those times when he KNOWS that thereís something amiss (but he actually thinks the problem is with everyone else, not him). Any effort to discuss it or to try and allay his fears and frustration make him further retreat. Maybe he has already forgotten....
Point to Ponder -: On our last visit to the clinic one of the questions asked me was "do you ever feel like running away?" My answer at the time was an emphatic NO. However, today my answer would be a resounding YES.
5/4/97 - I have observed that Jackís habit of a penetrating stare for l-o-n-g intervals is not necessarily a continual occurrence from day to day. It seems to run in spurts. I wish I could figure out what brings this on. Is it contentment? I sometimes think so....but other times, I feel or see a resentment in his eyes. Does he hate me for always saying "donít"?. I try NOT to say it, but when something happens that demands immediate action, I just react. I feel like a mother in a department store with a kid again -- "donít touch", "donít run", "stay with Mommy", "stop feeling your weenie - do you have to go?" Same commands, different year, different person. Frequently, as we sit in our easy chairs in the evening watching TV -- me, mostly reading -- I feel him staring at me and it will last for an hour or more. Even though I glance up and meet his stare, he will continue long after I have looked away. Is he out there somewhere or is he deep in thought - or is he NOT out there? If I ask "did you want something?", he will not waver. When we are out in the public, he will do this also -- enough so that whoever he is staring at, will also counter "did you want something", or, "can I help you".....Of course, there is always that element of anger from some people who will rudely say "WHAT ARE YOU STARING AT, MAN?" "NEED A NOSE JOB, FELLA?" TA-DAH!! Carol to the rescue again....the Momma bear protects her cub!!!!!
Another observation: Jack had a sulky day today and the reason was not clear to me until the end of the day. Today was Air Force Day at MacDill AFB in Tampa. I believe he wanted to go, but he had a difficult time forming words and I think he just couldnít get it out to ask me to take him. (I noticed several attempts at conversation were actually backward words -- "firestorm" for "styrofoam" and I think he meant "Air Force Day" when he said "Fay Dorcey" several times. I thought he was trying to say someoneís name and it was unrecognizable to me, so I ceased trying to guess his meaning.) Then I saw it on the evening news, the light bulb came on in my head and I asked him if he wanted to go tomorrow - Sunday. He said "NO", but is this one of those answers in reverse and he actually means "YES"? Itís hard to tell.
5/5/97 - We went to the movies today to see Tom Cruise in "Jerry Maguire". We sat directly under a A/C vent and I mentioned to Jack that when the air came on, I was cold. Jack, being the thoughtful person he is, asked if I wanted to move. Because it was so crowded, I doubted if we could find another seat, so I declined. However, forgetting each time that he has already asked me if we should move, he asked again and again, "do you want to move"....last count - 13 times. This is what is meant by "short term memory loss". He forgets he has asked. One patron seated in front of us audibly begged me to move!
5/8/97 - New habit. (Bad one) When he sees me in the bathroom, Jack will come in and turn the light OFF. Go figure....Perhaps Jack remembers a habit of turning the light off when HEíS not in it?
5/9/97- Jack started removing the nails from the lanai on the deck. When I asked him "why?", he would not answer. Several attempts to find out why was met with silence and he appeared to be angry at me. I just left him alone, but watched him from the window inside, fully expecting the lanai to collapse at any minute. It didnít ...but I still have not learned why he felt this had to be done. Maybe he saw an imperfection in it? Why were those nails have to be removed? Did they not belong there?
Later in the day, Jack said he wanted to paint the kitchen door white. I was delighted. It had been stained a unsightly orange shellac, uncoordinated with the kitchen and the white block in the outside porch. However, he not only painted the door -- he painted everything -- lock, doorknob, hinges, rather than leaving them natural brass, as he would have, had he been his usual particular self. But itís OK. The learning process for me coping with this disease kicked in, recalling a recent magazine article. It dealt with when to make an issue and when to simply accept. This was an easy one -- It wasnít that important. The decision to accept is easier, but totally out of character for me, since Jack instilled his perfection demands on me as well as himself. Just like the popular song recently recorded by Celine Dion, "Because You Loved Me", I am what I am because he made me. This is not to be interpreted that I have been molded nor oppressed, but simply that when you live and love as closely as Jack and I, you tend to pick up the good points of each other. But now I have to learn when to intercede and when not to, not only for Jackís sake, but for my own never ending search for infinite patience, because now I have to cast off a few of those habits.
5/15/97 - We had our bi-weekly appointment with the Medical Research Clinic today where Jack had his breakfast and administered his pill. The Execelon dosage is now 6.0 mg, having progressed to the ultimate dosage in about 8 weeks. Our next appointment will be June 25, now scheduled for monthly visits. I noted to Suzanne Klinkenberg, our caseworker that in the past ten (10) days I have observed Jack showing signs of increased energy and the amount of TV watching is less. He seems to want to be outdoors doing something, and he walks up to Lucy Besleyís at the end of our street to help her with her chores Heís so goodhearted and she is grateful for his help.
I have also observed, however, that his speech has become more mottled and inappropriate. In a recent newspaper article, I read of a young girl suffering from memory loss as a result of a serious motorcycle accident. In an attempt to say "fireplace", she would say "Mailbox". This is similar to Jackís speech patterns. Jack will become irritable with me because I donít understand what he is trying to convey to me, but he is not aware of what he had said.
A frequent occurrence is Jack asking me, "do you....."., (and when I am waiting for the rest of it to come) he continues to repeat "do you" several times in succession, just like a needle is stuck on a record. But he becomes irritated and impatient when I donít respond. ( To what? Not only has he forgotten his thought, he has forgotten that he didnít say it!) This is where the acceptance part comes in again. I usually say "No, dear". (I used to say "Yes, dear", but then he would go and close up the house and wait in the car, so now I respond differently.) Furthermore, Jack would use the same pattern when he would see something on TV and remark "There is....there is......there is,", look at me awaiting a response. "OK" is a good response that will not get you into deep doo-doo.
5/20/97 - For some unexplained reason yesterday, Jack removed all the weather stripping from the inside doors. Go figure..... The visit to Scottyís to replace the stripping was one of my most frustrating experiences. Jack will vacillate between YESES and NOS as I -- truly inexperienced in structural matters -- try to purchase stripping. I measured the width we needed - 3/8" - but Jack will cross it out and write down 1/4" which I know is not correct. The next time, itís 3/16", also not right, and on and on. He then measures the entire girth of the door, and tells me 9 ft. which I already had measured, and it was 17 ft. We finally hit Scottyís for the ultimate purchase and he spends more than 20 minutes, removing each package -- i.e., 1/4, 3/8, 3/16, 1/2, -- and replacing it back on the display rack. In an effort to move along, I kept asking him, 1/2? He says NO. He finally picks up the 1/2 package and we pay for it. Two minutes later, before we even leave the parking lot, he says itís the wrong size. I ask "what size should we get?", and he replies "3/8". Talk about a lesson in patience, and ultimately, futility!!! I return to the store and exchange it. Naturally, communication is a problem. When Jack is asked a question, he chooses not to answer, so then you must ask more questions, hoping against hope to get a response. Sometimes you hit pay dirt, but then you donít know if this is one of those times when he means YES for NO. At the present moment, he has installed the 3/8" weather stripping, but a new problem arises -- the door wonít close! Jack claims now he has to shave down the metal door jamb with his drill bit. OK, he drilled the door jamb and now the door wonít close without leaning on it and throwing the deadbolt. Inasmuch that I am the dummy here, I have no solutions except to do just that -- throw the deadbolt and hope that the weather strip will compress within the next few days so we can close the door. These "fixes" that Jack attempts are sadly becoming major calamities and costly as well. Me thinks the frequency of these "tool time" charades are earning us both a reputation. To quote the plumber - "pay the rate for the break", who warned us about Jack "playing" plumber.
Next disaster. I noticed that the recycled water was running down the street and I suspect it is not just runoff from our sprinklers. I asked Jack to turn the water off for a while. He does water excessively, but because it IS recycled water, our use is unlimited, and if he wants to spend the time turning the zones on and off, I donít want to make an issue of it. Itís a constructive outlet for Jack. Several hours later, however, he wants to water and he informs me that he canít turn the water on. Why -- I donít know and, at this point, nor do I care.
However, Checking the water meter box, I noticed it filled with water and before I have the chance to ask, I get the standard, monotoned, stock phrase of "I donít know" from Jack.
Is this the part when I get to run away from home?
5/20/97 - Talked with Suzanne Klinkenberg at the Clinic about Jackís recurring diarrhea. During the past two weeks, Jack has had spasmodic loose bowels and I was concerned about the interaction of the experimental drug, Excelon, with other OTC medications, namely, Imodium, an aid in curbing diarrhea. Upon consultation with Dr. Cohen, Suzanne advised me to continue with Excelon, but to be selective with Imodium unless Jackís bowels liquefy and the condition becomes really severe, at which time I should consult with her immediately. Itís comforting for me to have that extra shoulder to lean on for advice...God knows, I need it. Itís been a while since I was a mother and I am out of practice. I am amazed at my weaknesses since this disease reared its ugly head. I always prided myself on my ability to make decisions and carry them through. Whenever I have had to deal with a crisis, I relied on ME and this new role of indecisions (and, as my sainted grandmother would say, "head flapping") is new to me. I could rationalize and say perhaps my new-found weakness comes from having to deal with this horrible disease comes all at once and having no one to talk to. I guess This is where the support groups come in, but I still am not ready to deal publicly with private matters.
This was also the case with Jackís two (2) Tylenol PM tablets that he feels that he needs every night. To recap, Jack gets at least eight (8) hours plus sleep every day. The problem lies with not the quantity, but the timing. He naps mid morning for several hours and usually an hour in the late afternoon before supper, and then at least an hour or more in the evening. Subsequently, he is not ready to sleep at our usual bedtime of 11:00 p.m., so he will take a sleeping aid to ensure another eight (8) hours. Furthermore, although we both retire to the same bed at 11:00 p.m., it has now become a habit for the past year to retire to the sofa around midnight and sleep the remaining hours until morning. (End of recap). Suzanne also consulted with Dr. Cohen about the Tylenol PM and he did not anticipate any problem with continuing use each night.
5/20/97 - Observation: Jack picked up a ball point pen and tried to write with it. I watched closely when I sensed he was having difficulty with it (it had a cover and was not a retractable type). Sensing that it was "broken", he then threw it away, without realizing that he had to remove the cover to reveal the pen point.
Similarly, he is not aware that the TV program guide is set up by DAYS, and becomes frustrated finding a program to match his TV guide, when he simply needs to turn to the correct day of the week to match what is on TV. Several attempts to help him with this only provokes him. Again, he wonders what is wrong with me.
5/26/97 - No. 1 son, David, was here this past weekend and was amazed at his fatherís mental deterioration. David has been a realist dealing with the decline of his father and has been a tremendous source of strength for me, sending me tons of material gleaned from the Internet and obtained other materials by using Mary Annís status as a health professional. All very much appreciated. However, seeing a further worsening of his Dad this weekend after a six months absence, was still a shock.
5/26/97 - As we were cooking on the outdoor gas grill, we ran out of gas and Jack attempted to change tanks. I had left to go indoors to prepare a veggie and when I returned, I was horrified to discover that Jack had been poking a screwdriver in the plastic cap of the tank, and had actually gouged out large pieces of the plastic (rather than simply screwing the cap off). Had I not discovered this when I did, I am sure we all would have been blown to bits. Again, this is one of the chores I had previously left to Jackís expertise and hadnít bothered to learn how to change tanks property. However, to confirm my suspicions about the seriousness of this, I took the tank to the refill station, U-Haul, (Jack referred to U-Haul as "Havateel") to see if they could safely remove the remaining plastic cap. The attendant confirmed that it was a dangerous situation and refused to take it in, but instead referred me to Suburban Gas Corporation for demolition of the unit. I instead called Peoples Gas (closer than Suburban in Clearwater) who instructed me to bring it in and they would destroy it if necessary. The kind attendant decompressed the unit and replaced the cap with another. Whew!
5/28/97 - At the moment I am waiting for Marge and Kathy Sommer, Realtors, who have offered to give me a ball park selling price on the house. In my dilemma of whether or not to market the home, I have prepared a PRO and CON list, detailing my thoughts on the matter. So far, it didnít produce the results I thought it might., so Iíll just wait for their data. I also asked Marge to bring her MLS book in order for me to make a comparison of what maintenance fees, taxes and homeowners insurance would be and if, in fact, I would better off in a condo. Ironically, several years ago when we listed the house with Frank Cooke, it was a decision that we made together and now I miss that support in trying to decide if this is a wise move. As I have previously said, I am amazed at my indecisiveness and procrastination. If I were totally alone, I donít think I would be so dilatory, but I am trying to make a decision for the good of both of us, and I donít know what Jack is thinking. Is he thinking that I am trying to push him out of the picture, or does he not really care at all. Is he already used to me taking the reins that he feels his opinion isnít considered? Or is it that he is not aware. When I ask Jack about certain things, he will say "yes" and shake his head "no" at the same time. When I repeat the question (as if on cue), heíll say "NO" and shake his head "yes". Subsequently, I may ask again, (to get a two out of three?), but heíll become impatient with too many questions and he becomes confused. He wonders why I canít make up my mind, and of course heís right, I canít -- Iím still looking for his support that I used to have. (You see, honey, I didnít change -- you did!)
5/29/97 - Can you believe? Another leak! When I noticed Jack with the "turn off tool" (I donít know the correct terminology for the device to turn off the water!) and headed for the recycled water meter area, I asked him what he was going to do with it (I have a water-related phobia, justly earned.) and his reply was (aptly) "nothing". Thinking that he was going to turn the water off, I told him to put it away. I later learned that he was going to turn the water ON since he had turned the water OFF earlier.
Let me deviate from continuing on with the water leak saga, since I need to justify myself and why I dog his every move. The reality is that I need to stay on top of what he is doing and to what, since most of his efforts concerning the operation of the house and home wind up disasters and I find myself undoing his efforts, mostly by calling in the appropriate tradesman to repair his errors because he forgets a function or two. Unfortunately, his usual fine-tuned skills are a thing of the past now.
To further explain my nagging suspicions, Jack had developed a habit of turning the city water on and off several times during the day when we had the water leak.. Due to those previous problems, he just continued to carry on in the same manner he had developed during that time.
The reality is that the situation was resolved -- a fact that his mind refused to retain, along with many other things; hence, short-term memory. Likewise, when this situation developed, Ed Delaney, the plumber, gave us a section of PVC to place around the newly replaced shut-off valve, so it would more accessible in the future (as opposed to digging it up each time) and I then placed a large plant over the PVC to prevent the hole from filling up with water. Subsequently, each time it rained, Jack would faithfully remove the plant, and the PVC, thinking that he was doing the right thing, when it fact, it was the reverse. But you see, in his tangled mind, he had forgotten that the water leak had been repaired. He only remembers the association of the water leak and the PVC had something to do with rain, so during every rain storm, he felt obligated to remove what was placed there to prevent that very thing.
Now, to continue with this latest leak. It was in the recycled water line this time. (GEEZ, I FULLY EXPECT NOAH TO SHOW UP WITH HIS BLOODY ARK NEXT!) I called the city maintenance and I was informed that it was the homeownerís responsibility to repair because of the location of the leak. If you can turn it off with the "device", then itís not the cityís problem or responsibility. Didnít know that....... I asked Jack if he thought he could fix it and he said "yes". Second question: "or do you want me to call Ed Delaney, the plumber?". He said "Yes". Going back and forth with Jack saying YES, but nodding his head back and forth indicating NO always make ME impatient, since I cannot decipher the ultimate answer, AND this is one of those times when I really need the RIGHT answer. Sometimes two, maybe three, questions will give me an acceptable response, but I still never truly know if I am getting the response that he actually means. He asked me to take him to K-Mart to purchase a threaded 2-3 inch piece of pipe. However, when halfway there, he says, Scottyís. So we go to Scottyís. While I am trying to find the correct part, I spot Jack at the check out and assume he has purchased what he needs. But back in the van, he says, "I couldnít purchase the wrong part". (Wrong? Donít you mean "right" part?) No, he didnít -- he meant "wrong", since as I looked at it, it was the wrong part -- approximately l/2" short of the original part. IN WE GO AGAIN and purchase the "right" part. However, he refused to turn in the old part for credit towards the correct part. Oh, well -- Stockpile Sam!
5/30/97 - As Jack frequently does when my glass is empty, he refilled my Coke glass and pointed it out to me -- "TWENTY-FIVE", he tells me. Twenty-five? I questioned. (Iím thinking -- Cents....ounces....what?) "YES, TWENTY-FIVE", he says. I THINK he was telling me that he refilled my glass because when I said "OK, thanks", he settled back in his lounge chair, satisfied that he had done something nice for me. I have read frequently that in short term memory loss patients, they have no control over the words that are blurted out, and in most cases, are not aware that they are inappropriate for the matter at hand, hence, their impatience with others when they fail to comprehend. (Itís easier and less embarrassing to say
"OK" because the actual answer doesnít matter anyway.) It took me a l-o--n-g time to figure this out, and on occasion because some answers are so bizarre and not germane, I recall thinking to myself that it must be ME! This goes back to the period when I was unable to accept Jackís condition and I was looking for reasons, any reason, and frequently, that flashes back to me. And the very thought that it MIGHT be me became more acceptable in my mind than if there were something wrong with Jack. I guess because I just couldnít believe what was happening and every day something else was amiss and it was just a continuing bad dream turning into a real life nightmare, over and over again. Even now, when I think back to those moments when I found myself alone, I just couldnít control my racking sobs. The parking lot at KMART was only a short distance away and I could park in an area away from people who wouldnít hear nor see me crying. (God Bless those tinted windows!) Each time I encountered an acquaintance I hadnít seen for some time and I had to face telling them that Jack was "impaired", the tears would start. Of course, after that they would avoid me like the plague. No one wants to face unpleasantness, if there is another way out, and of course, there is -- donít. Subsequently, I would love to tell you that I have become more controlled, but the truth is I havenít, but I become used to it -- crying, that is.
The experts say that an act must be repeated at least 28 times before it becomes an ingrained habit. So now the crying is an ingrown habit -- the difference being, however, is that I havenít become too dragged down by it. Strangely, it refreshes me and rids me of a sea of tension. But I have now transferred this habit to others -- at least those who see me often. They KNOW up front that I am going to cry so THEY are becoming used to it! Spreading around this habit is a bit like using horse manure on your garden; the more it rains, the more you get used to the smell. Is that an oxymoron or a metaphor? Well, my best friend, my computer, remains stoic and is always there when I need him when I need a release and someone to talk to and with. Weird or what?
5/31/97 - More strange and odd bits coming from Jackís mouth/mind -- whichever. When I asked if he would like milk or water for supper, he responded with "pie". Actually, this is not so strange since I had baked a pie today and perhaps THAT is what he remembers at the moment. What I couldnít figure out, though, is why he continued to turn ON the oven, since I had completed my baking. As I saw what he was doing, I would follow behind him and turn it OFF. Each time he was in the kitchen, though, he would look at the oven, see that it was OFF, and turn it ON.....again. As I have said before in these texts, no one knows the AD victim like the one closest to him and in this instance, it is my belief that he forgot that he had turned it on several times previously, and was doing me a favor by turning it on for me...albeit that the baking had ceased many hours before. The association - THE PIE, and the oven must be on for THE PIE! (I think).
We went to the Taste of Pinellas held at Straub Park today. This annual event is a benefit for All Childrenís Hospital sponsored by the area restaurants, offering their "cuisine tastes" in mini portions. Since it is an outdoor affair, port-o-lets are strategically placed throughout the park. Jack is now in the habit of testing every toilet in Pinellas County. Remember when your kids were little and upon entering a department store, they immediately had to go to the potty? Jack shows these same signs. At first I was concerned if he was having a recurrence of his prostate problem, but in talking with other caregivers of AD, it seems to be a shared characteristic. Although he goes every ten minutes (to the same restroom), Iíd rather not challenge him about whether or not he HAD to go, since it may be that he really has a problem. I mentioned it to Suzanne at the Clinic who, in turn, will consult with Dr. Cohen. As has been Jackís habit about ordering food, he would approach the vendor silently, smile, and eagerly wait for the food to waft out to his hand. In anticipation of ordering, I would get his direct attention, tell him of the different offerings - one by one - so I could order for the both of us. Unfortunately, his memory span is so short term, that he can only retain one or two words before it has left him permanently. Even starting over produce the same results - nothing. So I would start to order what I thought he would like and whizzo!...heís over to the next booth getting something else before I could gather up the food and pay for it. Next, I found us a shady spot under a tree (he didnít like eating on the grass at all!) so we could eat, and heís off to the potty again. I was careful not to not take my eyes from him, so that upon returning, I could direct him back to our shady spot. However, before I could get up, gather up our food and drinks, he was in line at another food booth to order something else, and here, we havenít begun to eat what we previously ordered.. Heís forgotten not only where, but that we were eating, and he knew those booths had food in them. I made the mistake of giving him some of the tickets, just in case I lost mine. Thatís always been our habit - divvying our monies whenever we went somewhere together.
This really took care of me ever going to the bathroom because I knew I would never find him when I came out.
6/3/97 - As I was looking outdoors from my bedroom window, I noticed that the side and parts of the front of the large shed had been sprayed with black paint. It resembled a steel Dalmatian! When I questioned Jack about it, he boasted about how he painted the shed. Why, I asked? In his usual slowed monotone, he replied "I donít know".
Lucy Besley is scheduled to return to New York for the summer in two days. Before she returned last March, Jack had attempted to replaced a damaged lock on her screened door and in his fragile mind, did not do it correctly. Now it is time for her to return and the house needs to be secured, i.e., new lock for the door. I paid Kenny Turcotte $25.00 to replace it, since it was our responsibility in caretaking the property. At first, I tried to be discreet in asking Kenny since I wanted to protect Jackís dignity, but he seemed comfortable with Kenny doing the work, and was receptive when Kenny went through his "office" looking for spare parts, in an attempt to salvage the current door lock/handle.
The house at 9015 Bay Street N.E. is listed, effective 5/30/97 at $62,900. The sign is up, it has appeared in the multiple listing service hot sheet and been shown by Hofacker & Associates. I have a pessimistic attitude that it will take at least a year to sell, inasmuch that this area is still somewhat water-logged from last fallís flooding. But at least, I am doing something positive and it gives me a goal. The next step is to clean out Jackís back room of all the paints and varnishes that are housed there. I thought I was the packrat, but I think Jack is worse than I, since I am finding old used paper towels, plastic shopping bags, used raggedy towels, etc. I would like for Jackís sons to share some of his tools, but thatís such a final act to get Jack to agree to, so Iíll let that go for now.
Sometimes during Jackís quieter days, his only announcement for an entire day may consist of one or two syllables. Today, it was "66". Degrees? Age (he will be 66 years old 6/28/97)? Weight? Number of something? Price of something? Did he see something on TV? Itís hard to know what his mind has settled on. A questions from me, "66 what?" will get a response of "I donít know", or "no"....then youíre stuck. Last week he burst into the bathroom (as I was sitting on the throne!) to say "coffee filters".......?? Your first thought is ......do we need some? Does he want one? For what? Again, stuck. His answer to my question, "what about coffee filters?" was "I donít know". ( Neither do I, honey.) Subsequently, later in the day, we went through the same scenario with "keys". He made the gesture of inserting keys, and kept repeating "keys" over and over. Questions of "what keys", "whose keys", "do you want keys", "keys to what -- the door, the shed, the car, etc." produced the classic "I donít know" answer. As though I KNEW everything about this disease, I really believe he KNOWS what he wants, but has difficulty articulating, OR thinks he has said what he is THINKING, ....see? Do I know everything or what? Seriously, though, given enough patience (which I am short on) communication is possible. I only wish I were more educated on counseling and psychiatry to be able to help Jack become once again the man that is locked inside him.. Thatís what this disease does to a person. It robs him of his dignity and composure.
6/4/97 - Well! The house sold to a young couple -- Bonnie and Eddy Dennison. They spent quite of bit of time looking around at the house and asking pertinent questions. Debbie Fischer from ReMAX was the selling agent, a sweet gal.. Although the offer was for full price -- $62,900, they have opted for an FHA mortgage which forbids the buyer paying any of the closing costs, i.e., the seller does, and that means ME.
Marge Sommer tells me to count on at least $2,000 for their closing costs. At first glance, and to some not directly involved, this may not appear to be an attractive arrangement. However, if you look at the bottom line, $60,900, it actually is in the ballpark, or slightly more, than what I anticipated for an offer. My previous experience with Frank Cooke Realtors, as well as the comparables Marge Sommer presented at the onset of the listing agreement, predicted a slightly less listing price, let alone an offer. If I were to bank of their predictions of a selling price, it would be approximately $57,000, which stunned me actually. If Iíve done nothing else for this neighborhood, I have indirectly brought the values of a 2 bedroom 1 bath home up a few degrees!
Now begins the process of finding a suitable condo to purchase.
7/7/97 - I have neglected bringing this journal up to date, but in the process of finding a 2 bedroom condo that takes cats, our free time has been filled and Iím sure is confusing Jack. Although I want Jack to take part is the decision, I only ask Jack "do you like this one?" as a token gesture, knowing all Iíll get is a "yes - WOW" answer. (He likes them all.) Needless to say, there is no other discussion nor anything volunteered, so I know Iíll not be able to count on any input from him -- positive and negative. I still - after more than a year of this - have difficulty accepting the "aloneness" of this union, as well as the knowledge that all decisions must be made by ME. Even before this tragedy, if one of us felt strongly about an issue, we still bounced off each other, primarily to convince ourselves and each other that we were making an informed decision -- about anything, even whether or not to change brands of cat food, for Peteís sake. It was conversation, it was the way we did things, it was our way of life.....it just was, but no more.
We looked in Concord Village on 9th Street at a perfect 2 bedroom with a dream kitchen, a small Florida room, furnished, no less (with decent stuff -- not my taste, though), the living room/dining combination was narrow, only 9 ft. Wide, but 18 ft. Long. The drawback was that it was on the third floor. Somehow, the first thing entering my mind was that if Jack decided to leave the unit without my knowledge, where would I start looking? The elevator? The stairs? Although Jack has not "wandered" per se, he does have a habit of just walking, walking, walking and he always comes back to where I am. The problem is me, though. Do I go looking for him, or do I trust that he will come back to me "where I am"? Will he remember "where I am"? How long to I stay "where I am" and hope and pray he will show up? Itís nerve racking. Anyway, the unit is scratched for that reason. Next we looked at a similar unit in Concord Village, first floor, same floor plan as the 3rd floor unit, but no dream kitchen and still the narrow LR/DR combo. It was $39,900 and I made an offer of $37,500 which was refused with no counter offer.
The next step is to take another look at Marge Sommerís unit at Tulane. The rooms are larger, and newly decorated and itís vacant -- the drawback? it has a crappy kitchen. (So who lives in the kitchen? You canít have everything.) However, something about it made it seem homier. It has large closets (3) two baths, and although a second bath was not a priority, there it is. Itís a small tenant association - only 31 families and has extra security with an electronic talk/passage system that visitors have to be screened from the individual units and buzzed in. Entry to the individual units are from an inside hall, rather than outside. The building has a laundry on the second and fourth floors, but no pool. I had envisioned Jack spending time in a pool should a complex have one, but maybe that would get old, too. Weíll go to the beach instead. In addition, the price is right. Because Marge Sommer is a friend (even though we are not close and our visits are infrequent), she reduced the listing commission by $500 on the Bay street property and to avoid any price haggling on the sale of her condo, she dropped the price $2,000 from her original listing price of $37,500. I am grateful to her for this and the many other kindness she has shown me. Just when you think you are really alone and begin to doubt your very existence, someone comes along to reaffirm my being. Marge is a very compassionate individual, and I learned long ago when I worked with her, that she is without a doubt, a very honest individual.
Apartment living is definitely going to be different. It tugs at my heart that Jack will be so confined -- no garden, no yard, not even the chore of going out to turn the sprinklers on and off, as it also will be for me. Jack seems content to sit and stare at the television, even though I know that he is not focused on it. The sound is so low that I am hardly aware that itís on. However, since there will be little else to do in the apartment (hardly any housework), I will plan our week so that each day we will have something to do. To date, I have avoided taking Jack to the beach because of his melanoma, but I think early morning swims may not do any irreparable harm in short doses. Crisp Park is nearby and perhaps breakfast in the morning or an early evening supper will be a break for us., We can also walk to do our shopping (provided we buy small amounts and not too heavy to carry!) to fill our time. There are many options, Iím sure -- I just have to make a serious effort to investigate those options to eliminate boredom setting in. God knows I can use the walking -- not Jack. I have been neglecting my own physical condition -- not a good thing. Not only for myself, but I worry about Jack should I get sick or disabled. One of the things I miss most is just talking. Although I do talk to Jack, itís really "talking for the sake of talking" -- I guess I miss his responses most of all, even if it is just "hrpmh" or "uh-huh". Even the cats have noticed the difference. For the past few months, they have lived in a mostly silent atmosphere and when I say anything loudly, they jump a foot! Funny how self-centered Iíve become to think that I am the only affected one. Some of the material gleaned from the Internet by
David (a rosary every night for this kid!) notes that this is a "family" disease, affecting everyone, however diversely. Paul spoke frankly to me recently and said that the first time he saw and spoke with his Dad, he was shocked. I wish I had prepared him better, but I guess I was too caught up with my own lack of ability to accept it myself.
As I re-read the above paragraphs, I sense negativity in my words and until now, I was not aware of how much I doubt myself and the decisions I have made. A bad sign -- that I am losing confidence in my own ability. Another rosary for confidence and bravado tonight!
7/8/97 - Lucy Parris called me tonight and we had a real long chit-chat. She was my best friend and confidant at SPHA and I valued her opinion and advice. I deeply regret not having called her before this, but there was always seemed to be something else to do. As time passed, it became an embarrassment of not having kept in touch with her before so much time had elapsed. Lucy always seemed so wise and when she had something to say, people listened -- including me. and always had an relevant answer on any subject, problem -- maybe not always the answer you wanted to hear, but an answer nevertheless. I miss her and our problem solving talks. Now she tells me sheís working, and Iím afraid more time will pass before we get together. Thereís always Saturdays and Sunday and Iíll try not to procrastinate further.
7/10/97 - More news on the condo. Marge called to say that the compressor needed to be replaced. Earlier, I had told Marge that if there were a major problem, I would split the cost with her, and although it was not a condition of the sale, I would prefer to have an efficient system going in, than have any surprises later. It will cost about $978. Apx cost $436 apx.
Somehow or other, the expense of running the air conditioning in the condo is a major concern with me, since it isnít likely that you will open the windows for the breeze very often. Cross ventilation and all that theory, but itís a fact that living in a unit is not comparable to an individual house with trees around. I told Marge that she had my word and to proceed with the replacement. As I was telling Jack of this latest development, I could tell that his comprehension of the situation was not evident. Were Jack be in his normal technical mind, he probably would have voiced a strong objection to what I am doing -- so, subsequently, maybe I am grateful that I can make these decisions alone. However, I do miss his expertise in these matters.
Marge handed over the keys to the condo today and we went shopping for furniture. Again, Jackís awareness certainly is not acute. As I was removing the seats from the van, he again interpreted this to mean that it was "moving day", although I have repeatedly told him when "moving day" was as well as marked it on the calendar. I have trained him to look at the date of the newspaper every day so he would be aware of the span of time. For awhile, that seemed to work, but alas, that theory is now lost, too. Subsequently, he began by lining up the living room furniture to place in the van, in spit of the fact that I told him we were going to shop for a bedroom set. He became agitated, confused and started hyperventilating. Figuratively speaking, this is not totally unlike Jack in his normal state. Jack was a perfectionist in everything his did -- everything in its place, both physically and mentally -- everything must go according to plan, and even now in his fragile state, this is still evident -- the difference being that now he cannot control the imperfections, and in my opinion this is what frightens and confuses him. Before this happened, we as key figures in his life, just put up with his idiosyncrasy and accepted this quirk in his personality. Thereís nothing wrong with it -- just his way, and very unlike the average "Joe". Now this not only upsets him, but me as well. Again, "acceptance" that he is in a world of his own completely destroys me when I see that the most common things confuse and frighten him, and frankly, brings me up short again, again, and again. I canít believe this is happening to us. In a short span of 18 months, our entire lives have been altered forever -- never to be the same to what we planned and dreamed of for our retirement. If that is a selfish statement...so be it. I have my angry days, and this is one of them. I am unable change what is, but on occasion, I allow myself an uncontrollable cry (alone, of course) and give into my rage.
I read his mind, even though it is so fragile right now. Some might call it ESP -- but we have always had this communication between us that read each otherís minds, and I guess that hasnít changed, even though his mind has.
This is now 8/14/97 -- having missed a lot of weeks updating my journal. But once, we received access to the condo, we spent the better part of each day packing boxes, loading them in the van, and spent several hours a day at the condo unpacking. Being able to do this put us so far ahead, of the actual moving.
In addition, Paul came over just as soon as we purchased a computer desk, put it together for us and set up the computer. Although it was available in the condo unit, I did not set aside time to actually sit down and work on my journal -- we were too busy preparing for the move. Jack seems totally uninterested. He neither packed nor unpacked a single box, including his own personal stuff, i.e., toothbrush, hearing aids, comb, shaving stuff. He didnít seem to comprehend the plan to taking stuff we could do without for a while, and yet he again each time, wanted to bring the heavy stuff, which I had explained would be left for the movers. Iím ashamed to admit that I am losing my cool more often for several reasons:
∑ One: that my mind is so full of things that have to be done, he actually is a hindrance and I have to watch his every move. I pack stuff to be moved, and heís throwing it in the trash. Does he think the significance of being in a box, indicates that itís trash?
∑ Two: In the past, I have been able to relieve frustration by sitting at my computer and putting it to paper, so to speak. Iíve not taken the time to do that so I guess Iím keeping things bottled up. Guilt, guilt.
An irritating habit has just surfaced in Jack is one that is particularly irritating. If Jack has his mind set that he is doing to do something and you give me another instruction, it seems that his mind cannot override the original thought. For instance, if Jack is headed to the trashroom to empty the wastebasket and I ask him not to, he will continue on doing it. Twice, three and four times.....Jack, wait - donít empty the wastebasket -- he will continue going -- he reminds me of the Pink Energizer Bunny -- one purpose, one mind. Although this is certainly not a major issue -- the wastebasket, that is -- there are times when it becomes serious. On occasion, I literally had to pull him back from traffic, when I instructed him not to cross the road because of oncoming traffic, and the thought he has in his mind is that he IS going to cross the road. The danger of oncoming cars was not a consideration to him -- all he knew was that he was going to cross the road....period. Itís as though he is holding onto his thought first, as if afraid that he would forget to do it and later, he will entertain your instruction, because he canít hold two thoughts at once. Talk about armchair philosophy. Why is it that I have to have explanations for everything. I think I would have made a good scientist, had someone else chosen my of profession. Paul got a chuckle out of this. While he was assembling this computer unit, Paul would ask Jack to place a screw in a certain place, and Jack would pick up a nail -- "No, Dad, a screw -- a screw, Dad....Dad, put a screw in that hole. Hereís a screw, put this in that hole. (Pointing at the hole) Dad, not a nail -- put this screw in there." Nothing......!!!!! Jack never wavered from placing a nail in the hole, as though Paul were not talking at all. He never lifted his head to indicate that anyone was talking to him......he just continued on with his task of placing the nail in the hole. After a fashion, Paul didnít bother.
And that has been my role, as well -- to realize that he will not listen nor change when he has a mind set for, except when there is imminent danger at which time, drastic measures have to be taken to attract his attention, and that means physically holding him.
Our new condo unit has vertical drapes and Jack has a habit of just plowing through them when he exits to the balcony, breaking off some of the verticals. I led Jack over to the cords that control the moving of the drapes and showed him that he must pull them aside before going out to the balcony. To explain further -- there are two sets. One is a cord that draws the vertical slats to one side. The second is the chain adjusts the position or direction of the slats to allow more or less light into the room. As I showed him the cord and tried to hand it to him, he grabs the chain and yanks it, which either reposition the slant of the vertical or closes them entirely. I removed his hand from the chain, and gave him the cord, all the time explaining "use the cord - not the chain". He repeatedly kept dropping the cord that I was handing him and pulled the chain. I thought "patience, girl" and kept repeating the task, thinking that duplication may sink in. It didnít. Although I didnít count the times we did this, it had to be more than 7 or 8. The next time he exited through the verticals, knocking off several slats...again. I guess Iíll be replacing that within the year. I keep thinking that he may learn new skills, when in fact, how can I expect that, when he has forgotten ones that he has had for decades.
August 14, 1997 - Since we have been in the condo, I am at my witís end about Jackís inactivity and what to do about it. There is NOTHING for him to do, except watch TV and he does that continually. Several days ago, he said "Iím going to take a walk" (not quite that glibly nor audibly....it usually comes out hesitantly, "IIIIIIIímmmmm go-go-eeeeen w-w-w-walk" which takes a minute or two. My first thought was that he was in unfamiliar territory and what if he should not come back. What then? However, he was gone before I could give it any further thought. Every time that door slams, I give a quick glance throughout our 3 rooms to see if heís leaving. He came back about ten minutes later, and has been doing it ever since. Jack has an uncanny sense of direction and itís one trait that he has retained. Although friends have warned me -- "he will wander", I think I have to do what my heart and soul dictates.. I cannot and will not withhold all privileges from him unless I have good reason to.
Weight Loss:: Jack now weighs 180 lbs, having lost 23 lbs in two months. Although even having lost weight, he would not be considered skinny, only that he is thinner than what we are used to seeing. What truly concerns me the greatest is the comparably short length of time he has lost it. Because he is 6 foot, a normal weight for him several years ago was 175 lbs. But as the age sets in and we are less active, the middle spare tire develops, and the weight sets in. Dr. Cohen prescribed Ensure and ice cream several times a day.
August 11, 1997 - Today Jack came to me while I was using the computer and said very clearly, "Microsoft". As I looked at him trying to understand if he were making a statement (just because I was using the computer?.....or did he see something on TV about Microsoft that he wants me to see?.....) As it turns out, he just wanted me to turn the channel on TV. Why did he say Microsoft? Who knows.......the brain is not controlling the vocal cords, that we know.
Also today, I noticed that he fed the cats MY cereal MY CINNAMON STRUDEL!!!
Why? Who knows. Earlier I had labeled the similar plastic storage containers so that wouldnít happen, since being in this condo, things are not stored as in our previous house I did label the plastic containers that we use for storage. One says CEREAL -- the other says CAT FOOD, with 72 point letters encircling the container.
Sadly, I donít think Jack is adjusting comfortably to our new home. He is reluctant to open a closet, a door, a cupboard to look for anything. Although I packed and unpacked and everything, he naturally would not necessarily know immediately where everything is stores, but he hesitates to look for anything, as though it was not his home. If he needs a spoon, he will ask me for it. When we do the dishes together, he will leave all the dishes on the counter for me to put away. While some may not consider this an issue, it is not the incident itself that is significant, but the reasons that motivates Jackís behavior.
In an effort to occupy some of Jackís time, I sent him outdoors to pull some weeds and put some semblance to the small patch of shrubs outside our patio. Unfortunately, I did not supervise him except to glance out the window from time to time to check on him. I thought that his knack at gardening would be still be in evidence -- alas, not so. He removed four flowering shrubs and dug up the roots to create a dirt bed. As I was going out to check on his progress, our neighbor, George, was suggesting to him that he shouldnít remove those shrubs, but it fell on deaf ears. No reaction....he just kept plugging along, and we are now left with a big circle full of dirt. I mentioned that we should get some mulch to fill it in and his reply was NO. Although he did not respond to Georgeís suggestion, I think secretly he resented being told what to do. God knows I tell him what to do A LOT and I know he resents that, too.
August 20, 1997 - As I sit here before my computer, I am locked in the room attempting to put myself together, away from Jack. Several times in the past, he has exhibited a fierceness that I see in his eyes that wants to hurt me and has even started to raise his hand to me. Ironically, I KNOW why. He cannot comprehend simple instructions like "put that down", or reversibly, "pick that up". I, in my simplistic understanding of this disease, think that if I repeat the instruction, he will comply. I just have just figured out that my repeating of the instruction(s) is what ignites his ire. This all started because I began to install the coffee pot under the cupboard and I asked him to hold the appliance against the cupboard so I determine where to place the screws on the shelf. Each time (five to be exact) he put it down on the floor as I handed it to him. Iíd hand it to him, and heíd put it down -- five times. This is a typical response. No amount of explaining, "hold it here for me" penetrated his fragile mind. He would continue to put it down. This particular incident was a real bummer. Jack decided to take over the task and I thought WHY NOT ...it may fill some of his time. FOUR HOURS later, only two screws had been installed in the cupboard, and when I went to check on him, I asked he if he had measured the space to determine if the coffee pot would fit. He hadnít and it didnít. No big deal, but frustrating as hell in an effort to communicate with. Three times he dropped the screws and nuts and had to remove the refrigerator from the wall. However, when I ordered him out of the kitchen he refused to help me put the refrigerator back against the wall.
On a few occasions, several well-intentioned friends have advised me to enroll Jack in a day care center. Naturally, I shied away it. Those concerned friends, I know are objectively seeing a pattern that I refuse to acknowledge. And even though I can admit to that, I still am locked in a denial. It all sounds so final, as though I have given up hope of any sort of normalcy. Is this the first step to a permanent removal from the home? Is this the end....or is this the beginning of the "long good-bye" I keep hearing about. Whatever it is, I can hardly face it. At this very moment, the sobs are coming and my throat is closing up and I fear I can never ever look forward to another day, let alone happy, again. Why are there no answers.......
Sometimes I just want to stay in this apartment, seeing no one so I will not have to explain Jackís condition, but even that is something that I can hardly bear to live with. When he approaches me with that questioning look that tells me he wants something, but canít tell me what he wants, really ruins my composure. When I tell him to wash and brush his teeth, the "look" is there again...."what is Ďwashí "what is Ďbrush teethí? Let the demonstrations begin! Did you ever try to brush the teeth of someone who is 180 lbs and six foot tall who doesnít want his teeth brushed or more importantly, doesnít know what you are trying to do to him? Heís scared, and youíre thinking you are doing the right thing! At least his breath will be better. Oh -- give him some mouthwash instead? I tried that......the 28 ounce bottle was gone the first day. I think Jack thinks itís soda or something that you drink right up. Oddly enough, the next day may be entirely different and he will brush his own teeth and days later, weíre back to square one again.
So I have come to this and realized that this change of residence has driven Jack further into himself. I, too, are being driven into myself.......what choice do I have but to further isolate myself so that Jack will be a contented person once again and to what means.. I can also rationalize how much worse would Jack be if we hadnít made the move -- again, who knows? The most important thing I miss about Jackís former personality is the conversation. We used to have such stimulating talk fests -- about what? This and that, the news, the television programs, what we would like to do, where we liked to go, when....just on and on. Conversation.
In re-reading my previous text, I have not specifically note what led me to make this decision. In spite of the many misdeeds Jack has done and I will cite a few here.....just turning on the bathtub faucet and walking away, his lack of hygiene, and so many other bizarre events that are not included here.
Tomorrow we will visit the St. Petersburg Senior Center at 3455 58th Avenue North for a tour, "( not only to see if we like you, but to see if you like us...("," as I was told by a condescending supercilious aide. -- duh I think I did mention that I was calling for my husband, not myself.
August 21, 1997 - After a very sleepless night -- I was still awake at 4:45 a.m. having not fallen asleep at all -- I awoke at 9:30 a.m. I spoke with Jack and told him that we were going to look at a day care center he might be interested in attending. He said "OK". I saw no emotion in his eyes at all so I assumed that he really didnít comprehend. How wrong I was......Nearing the Lealman Center at 3455 58th Avenue N. I started to cry uncontrollably and just could not go in. I circled the block four times trying to regain some semblance of composure so I wouldnít look like a total idiot. Eventually, I went in and met with a counselor who gave us a tour of the facility. It was clean, and appeared well organized with two very large rooms, one with a 4 foot or larger TV, with 5-7 large banquet tables where lunches were served; another with pianos, organs (also quite large), a separate sitting area with upholstered sofas and chairs suitable for reading, a fenced and walled courtyard for those who just wanted to be outside. Again, while the counselor (who was very efficient and compassionate) was showing us around, I lost control again and had to excuse myself to the ladies room. When I returned, Jack also was crying. I think because I was crying and not because of the situation. The counselor asked me to call a counselor named Elaine Jenson and tell her that we had had the tour and was now prepared to proceed. On the way home, Jack said an odd thing -- "do you want to stop at Maria Manor?". (Maria Manor is nearby nursing home). I nearly swallowed my tongue!
Jackís statement was a complete shock to me and it told me that he understood what was happening with the adult day care negotiations and such.. Since I had never discussed the term "nursing home" with anyone, I know he had never overheard me in conversation. This brought to mind a conversation he and I had several years ago when he tried to extract a promise from me that I would never place him in a nursing home. I recall vividly my answer -- the future was so unpredictable that I could never make a promise like that to him, nor would I expect him to, especially in matters like this. Justifiably, he has a bitter taste while remembering his mother at the Abbey Nursing Home whose admission he opposed vehemently, but lacked the moral strength to oppose the majority.
8/23/97 - This morning he ladled coffee into the top of the coffee pot --i.e., the portion of the coffeepot where the water should have been poured. There is a basket and a paper filter where the coffee is inserted. Needless to say, itís ruined because the pump ceased to work -- in all probability, clogged. Several days ago, for some unknown reason, he used teabags in the basket, rather than coffee. I canít remember in all our married years seeing Jack having a cup of tea -- iced, maybe, but never hot.
I also asked him to help me remove two v-shaped boards he had installed on an end table years earlier, their purpose now defunct. Unfortunately, he was unable select the proper tool to do this. When I handed him the screwdriver and pliers, it was evident from the look on his face that this was a foreign object to him. Actually, I had my doubts that this was going to work, but I still hope for some glimmer of recognition that some of his trade will surface. Each time, however, is a disappointment. But I still try and hope for one of those "good" days.
9/1/97 - For many months, I have admonished Jack for filling up the kittiesí dish too full, for putting too much litter in the litter box, for using too much dish liquid and many other excesses. I now realize that his actions are not part of not remembering how much to use, but that he has lost his power of reasoning. In a previous text, I have mentioned that Jack turned the AC too low and the heat too high -- I now know that that, too, was lack of reasoning. Why am I so slow to pick up on these ? Obviously MY reasoning needs honing, too. Lacking a professional degree, maybe this, too, is a form of memory loss, but somehow, I feel more in control or more effective if I can explain some of these things to myself. See? Iím still looking for reasons...not the right ones, but reasons, nevertheless.
Jack now weighs 176, now having lost 27 lbs. I have carefully watched what he eats, and when, but I still cannot contribute intake to the weight loss. I still measure a plate fuller than mine and he always finishes his dinner and is looking for a snack later.... and every evening we have ice cream about 9:30 p.m. (Of course, I should be doing without the ice cream, but itís a good excuse for me!) I give him Ensure either with his meal or he may drink sit after dinner. He loves going out for meals, especially buffets, where he generally beats the house. Just yesterday, Margaret treated us to Lubyís and he downed a plate of liver and onions, mashed potatoes, a separate potato salad, green beans, three (3) biscuits, and peach pie for dessert.
9/2/97 - A call from Suzanne at the Memory Research Clinic came today with a request to come in tomorrow (Wednesday, September 3rd) to meet with Dr. Cohen. It is his opinion that the Exelon drug is not effective with Jack, evidenced by his continued loss of weight -- to date, down 27 pounds to 176 from 203 in less than 3 months.
Suzanne also mentioned that I, as his caregiver, have considerations and options about his treatment and did I agree with Dr. Cohenís assessment that remaining on Exelon is not a viable solution. While I did agree, I asked if there were some other drug, experimental or proven, that he would recommend to curtail the advancement of AD or at least maintain his present status. Suzanne said she would mention Aricept to Dr. Cohen and see if he were receptive to administering that to Jack on a trial basis. Our appointment is for 12:30 p.m. Wednesday, the 3rd of September.
Also, I have a meeting with Joanne of Dr. Dawsonís office for the reading of his tuberculosis test a requirement for admission to Lealman Adult Day Care. I have an appointment Elaine Jenson, counselor, for Monday, September 8, here at our home.
I am ambivalent about the admission of Jack to an adult day care center. I tell myself, -- how much different is he going to be at a place with strangers. Can he not also watch television at home just as he can at the Center? Will he miss being at home or will he care at all? . Will he become more social with them and interact or become morose and moody if Iím not there to help him? I am acutely aware that these questions border on my guilt associated with a commitment to the Center, and is the initial step to institutionalization at a later date. I canít bear even to think about it. This really is the beginning of the end. How can I maintain any composure when I see him board the bus to the Center? My first reaction to this was that I could get a part-time job....but how could I ever keep my mind on a responsible job when my thoughts are with Jack and how is he doing? And worse yet, what will I do if I donít get a job? Nearly a year has been total devotion to the care of Jack and I have lost my perspective. At this point, I donít really care if I donít regain it.
Noticeably, I have not been as diligent in recent weeks in keeping an accounting in this log as I had been at the onset of AD.. When I was fiercely writing nearly every day, it was a form of therapy, both emotionally and mentally, for me as I placed events and thoughts on paper, and to systematically to record events, incidents, etc. for later reference. For lack of a better term, Iíll use "indifference", but the lack of recording it does not mean that the incidents no longer happen, but it appears that I have accepted them as commonplace. Is that good ??? I donít know.
Jack and I saw Nick Morrison, a fellow housing inspector at SPHA with Jack, at Publix today and Jack did not recognize him, but did acknowledge him with a smile and handshake. Looking at Jackís eyes, I recognized that blank, vacant stare that told me that he didnít recognize him, but this expression also indicates that the absence of remembrance is of no consequence to him. Not upset that he didnít remember him, not impatient with himself that here was someone he should have known -- just nothing.
AD has such deep, dark bottomless pools that trap victims of AD into nothingness, accessible to none. To those of us who are so concerned that the victim of AD doesnít remember and want them to remember -- we try and try to bring about some semblance of recognition in hopes that AD is not really there -- that if we try harder and harder, it will go away and KAZAM! All of a sudden, their memory is back and we are glorified that we have done a good job. When, in truth, we KNOW that that will NOT happen, so why do we ALWAYS say, "donít you remember Nick that you used to work with, lunch with, cry with, swear with, commiserate with......" But we always do say that. How inane.
9/3/97 - At an appointment at the Memory Research Clinic, I met with Suzanne Klinkenberg and Dr. Cohen briefly to complete the reports associated with Jack and the administration of the drug, Exelon. Since we all agree that the drug was not effective, it may, in fact, have a relation to the loss of weight Jack is experiencing during the last several months. However, as Dr. Dawson noted, no one actually knows. You have to wonder what Jack would be like if he werenít taking the drug, but again, no one knows. It will be interesting to see how Jack behaves or regains weight without the Exelon. The initial trial will be 30 days without any medication, after which, Dr. Cohen will prescribe Aricept, also on an experimental basis. Experimental meaning on a trial basis and how it will react to Jack, since Aricept is not an "exerimental" drug, per se, but available on the open market.
9/4/97 - Episodes like the one today not only try the patience of Job, but make one wonder if this is a test for the great beyond and what our roles will be there.
I decided to dismantle the light fixture over the dining room table and wash it. The light fixture has twelve - l0 inches in length glass panes which are beveled and diamond shaped and are fastened to the fixture by hooking the glass panes onto a spoke and holding it on with a 1/4" clear plastic nipple which prevents the glass from falling off. Initially, one would have to be extra careful taking off the nipple so the glass would not immediately fall off and break, and also to place the very, teesy clear nipple in a place where it would not get lost or knocked to the floor or rug where it would be almost impossible to find. You guessed it -- thatís exactly what happened. I did not enlist Jackís help at first, but the fixture had a tendency to sway before you could get a firm grip on the nipple, so I asked him to hold it for me while I removed the nipple. As per usual, Jack wants to help, and went ahead and pulled the glass pane off before removing the nipple -- he popped it off and probably now gone forever somewhere in the 14x22 room, bouncing off who knows what. The proverbial needle in the haystack. Jack does not comprehend when you ask him to stop -- itís as though he doesnít hear -- he just forges ahead, ignoring any request to "stop" or "donít do that", no matter who says it.
When I forced him to stop removing the panes (each time popping off that crucial little nipple flying who knows where!) he had already lost 12 of the 18 nipples. He just cannot reason or be able to assess a situation. For instance, in order to remove your socks, you must first remove your shoes, but he will tug and tug on the socks, wondering why he canít get them off. After I had removed all the glass panes and placed them in the dishwasher, Jack approached me, cupping his hands in a circle as through he were holding a ball, and kept uttering, "little-little-little-little" going on for more than 5 minutes, trying to tell me something.....what, I donít know. He repeated this at several intervals as though this next time I would understand. I didnít. When I asked him to show me, he pointed to the nipples I had retrieved from the floor - some of which are gone forever. I still didnít understand and donít know even now what he was after.
As Jack was leaving the building today to take his 10 minute walk, I saw him enter the Port-o-Let across the street. The average person usually will avoid using a Port-o-Let at all costs, especially if there is an in-house facility available, but Jack needs to explore every facility in every store, supermarket, etc, we visit. The Port-o-Let did surprise me, though. It would not surprise me if he may on his walk someday, knock at a door and ask to use theirs! Itís not a completely irrational thought when Jackís current behavior is considered.
Several years ago when I had to visit an emergency room, a rather distraught elderly woman entered the facility with an equally distraught, also elderly, man, who was immediately placed in a wheelchair. The women approached the receptionist and said in a loud enough voice for everyone to overhear "you take him and find someplace for him. I canít do anything with him", and promptly left. The gentleman seemed unaware that she had left him, but proceeded to move his wheelchair to the wall and bang into it repeatedly, as though if he pushed hard enough, he then could go through it. He would then turn, approach another wall, again banging into it again and again. During the time I was waiting for treatment, this continued on and on for approximately 1Ĺ - 2 hours. Offers to help him, turn him around, or otherwise ease his frustration, were to no avail, since his determination was purposeful, or so it seemed. I found myself wondering why no one on the hospital staff would intercede, and also why no one on the staff cared to try and stop him. I later found out that this was not his first visit there, and but perhaps was his last and the delay was in finding an appropriate facility to take him. Until Jack began exhibiting odd behavior, this was my first encounter with someone with AD. On many occasions, I find myself remembering back to that incident to try and gain some perspective on Jackís bizarre behavior and try to find a reason why he does some things.
Is it because he is trying to tell me something and canít articulate?
Answer: Yes, sometimes. Does he want something that he cannot express readily? Answer: Maybe, sometimes. When I ask him "can you talk?", he always promptly replies "YES".....and then I tell him that he needs to talk so I can help him. However, this is rather futile on my part, because by this time, whatever he wants probably has already been forgotten. Numerous times during the day, Jack comes to me to change the TV channel, and he can clearly say, "can you change the channel", without hesitation. Why is it that otherwise conversation is so difficult for him and he canít get it out? On occasion when I canít understand his attempts to ask something, I have to just ignore him and he will retreat to his chair, having already forgotten what he wanted.
I noticed Jack limping slightly when he returned from his afternoon walk. When asked, "what happened?", he said "no". Further questioning, "did you trip?" "no". ....."Did you fall?"..."no". During the afternoon, he seemed better, but by evening, his limp was more pronounced and I applied ice packs. I went looking for elastic bandages and finding none, I remembered what happened to them. I did pack four/five elastic bandages, along with several velcro straps I had kept specifically for keeping an ice pack in place in awkward places, also heating pads and my steel brace I occasionally wear for repetitive carpel tunnel pain.. It was probably in one of the wastebaskets that Jack threw out. I had packed some bathroom supplies in a several wastebaskets for easier handling, but when I arrived at the condo to unpack, only the empty wastebaskets made it to the condo and I didnít think to ask at the time about the contents. Jack assumed that because it was in a wastebasket, it should be thrown out (isnít that usually what we do with stuff in a wastebasket? -- throw it out, of course!) The move was over before I realized what was happening. He later told me where he threw it -- in the dumpster here! Too late! Anyway, Jack has to see Dr. Dawsonís nurse tomorrow morning for the reading of the TB test -- Iíll ask that Jack be x-rayed and treated.
9/5/97 - Jackís right knee is considerably swollen. Dr. Dawson was kind enough to treat him at the Clinic and ordered X-rays which showed no break or fracture -- only a bad swollen knee which he treated with an elastic wrap and prescription Motrin and light moist heat.
9/5/97 - While I was concerning with Jackís mishap, I had another emergency to contend with. Late last night as I was preparing for bed, I noticed that the rug in the master bedroom closet saturated as well as the area in the hall flanking the closet and cold air return. My first thought was that the water heater had sprung a leak, but the wetness was not close to the heater. The second thought was that there was a leak in the plumbing elements in the slab. A call to Kathy Leisure, Property Manager for Tulane, quelled my fears when she suggested that from all indications, was a clogged condensation A/C line, a common occurance in condo living, and since I was at the end - so to speak - with another three floors above me, this was a real probability.
This morning Kathy Leisure dispatched Phil Peters A/C to my unit and left a message on my phone to call Andrews Carpet with a convenient time for them to refurbish the saturated carpet and pad. It totally blows my mind is that when something happens, he just sits and doesnít concern himself with whatís going around him. His former self was a complete opposite. He, in fact, was one of those customers that other technicians abhor, because he always took charge, policed the work they were doing and made sure they were doing it in a timely, efficient manner. Although Jack was primarily a carpenter, he was a master tradesman of several fields and when he could, he did all repairs and renovations at our home -- plumbing, electrical and air conditioning. When we purchased our central heating and air conditioning system, Jack did all the duct work, installed the air handler and compressor and just phoned Walt Burd to make the connections. I just find it odd that his personality is so dissimilar now and his manner has taken on an indifference . I always thought that environment and heritage created each individualís personality and character. Now we are finding out that the cursed brain stem is the dam creator.
9/6/97 - Jack is wearing an elastic bandage to relieve the swelling and discomfort of his injured right knee. No fractures -- just a bad contusion. When his leg started to swell, Dr. Dawson instructed me to remove the bandage, apply low heat to the area and elevate the leg and he also has a pain reliever medication to take after meals. When I had the prescription filled, I waltzed him around Winn Dixie in a wheelchair they provide for their patrons. Strangely, however, after we returned from W/D, he wanted to go for a walk! In the evening, I unwrapped his support and applied heat for an hour. Promptly after I re-wrapped it, Jack started to re-apply the heat pad. I told him "no". He replied, "OK", and proceeded to put on the heat pad.
†††† Me:† Jack, leave it off.
†††† J:†† OK
††††††††† (Continuing to put the heat pad on).
†††† Me:† Donít put it on now. Dr. Dawson said only for an hour.
†††† J: †††Ok
This went on for 6-7 times, until I got up, unplugged the heating pad and placed it in the linen closet. Jack promptly got up, removed the heating pad from the closet and started to plug it in. No amount of talking will release him from the mindset he has set for himself.
Another incident of not comprehending: I asked Jack to hand me the TV remote. He hands me the newspaper. Again -- "Jack, may I have the TV remote?" He hands me his soda glass, and on and on and on.
I had the dishwasher running and I asked him if he could hear the TV OK.
He said "sure". ("Sure" is the response word that Jack will utter to any questions put to him.) Less than 20 seconds later (as though he really had heard me), he gestures toward the ceiling, saying "up, up, up". Now I did not comprehend ....but soon I realized that he wanted me to turn the volume up on the television.
9/8/97 - A long awaited visit from Lealman Adult Day Center was scheduled this morning at 11:30 a.m. and we met with Elaine Jensen who took our application for enrollment at the adult day center. The visit and application consisted of a verbal interview and the completion of the required forms dealing with Jackís abilities and disabilities, medications, limitations, and general health. Transportation is available to those with no other means but since I drive and have a vehicle, it is a predetermination that Center transportation will not be provided to Jack. Similarly, the ability to pay is also a factor for admission, although I was not required to produce any documentation of our financial status other than a verbal confirmation of our Social Security income. Ms. Jensen quoted me $126.94 for the three days - Monday, Wednesday and Friday - that Jack will be attending, stating that this is the actual expense of the Center. Since this is an impossible payment for me, she asked me I what I felt I could pay. I replied $6.00 a day. Even this figure adds up to approximately $72.00 a month and is simply another added expense to my already over-taxed monthly budget. But Iíll have to give it a shot.
Later in the day, Jack said what I thought to be an odd remark. "Do you want to go to Chicago?" As I have said in earlier text, occasionally I have been able to sift through some of Jackís gibberish to determine what he wants at the time. An incident, something he may have seen on television that triggers, God knows what, in his fragile brain, the name of something -- anything. I sometimes take pride in my interpretations, knowing that even his immediate family cannot reason through it. But I must say, this Chicago bit had me stumped. Additionally, the short phrase took him at least a full five minutes to enunciate - stumbling, stuttering, hissing, and all with gestures, pulling at his clothes, rubbing his genitals and scratching his body all over. Watching him struggle so almost embarrasses me as I try to keep my focus on him so he can finish. My heart goes out to him, desperately wanting to help, but knowing I have to exert infinitesimal patience and allow him to get it out in his own time and pace. Otherwise, an interruption of "what is it" or any other question in an effort to help him, will only result in him losing the very thought he is trying to convey. I know some people think that they are helping him remember, if they question him before he is allowed to finish. That is a misconception. Interruptions will only cause Jack to lose his concentration and whatever he is trying to say is lost forever. Later as I was consulting the TV Guide, I solved the mystery -- Chicago Hope was on at 10 p.m. Now why didnít I know that.....If he had said "do you want to watch Chicago", I may have made an association sooner, but the phrase "do you want to go to Chicago", threw me off. We Caregivers must reach into our bowels of comprehension to deal with the fragile minds of ADs on a minute to minute basis, and for approximately 18 hours a day, in order to selectively assist with every thought, action and deed. This in itself seems an an unlikely task and may be perceived as an exaggeration. But in order to effectively live with an AD and keep your sanity, you must crawl inside the mind to achieve any sort of perception. Just recently, a lesson in filling and returning an ice cube tray to the freezer left me in tears. Not only does he not understand the phrase "fill the tray with water", "put it back in the freezer" takes on a whole new connotation and evolves about 3-4 steps.
1.†† "Fill" -- whatís "fill"? (How do you explain the verb "fill" Run the water and show and repeat "fill"
2.†† Whatís a "tray"? Take the tray, repeat "tray" and let him feel it. Demonstrate water filling the tray.
3.†† "Put it back" has absolutely no meaning. Jack will only pick it up and put it down, not having absorbed any of the above, even though he shakes his head side to side (meaning "no") and says "yes", and at other times, will reverse the shaking of the head.
9/13/97 - When I awoke in the morning, I just casually remarked "youíve had your breakfast already?" and as I was saying it, I noticed the cereal bowl in the dish strainer. Jack apparently took this to mean "have your breakfast", upon which he promptly got up, had another banana, and fixed himself another bowl of cereal. With that second breakfast under his belt, he again showered and shaved for the second time this morning, and itís only 7:30 a.m.
9/14/97 - As we were riding in the van, that "dirty old sock" aroma hit me, which is usually stale condensation in the A/C unit. I asked Jack to please get the Ozium spray I keep in our storage box. He promptly opened the storage box and started looking in a regular size envelope I keep discount coupons in. Since I knew he wouldnít find the spray in there, I took it away from him and repeated my request to get the spray. Taking the envelope from me, he again continued his search for the spray in the envelope. This was repeated four additional times. Jack apparently focuses on not what you say, but what he is thinking at the time (I think!)
9/15/97 - Jackís first day at Lealman Adult Center. I was like a mother hen with the same feelings I had when my sons had their first day at school -- will he be alright.......without me....what if he doesnít like it.......what if he tells them "Iím going to take a walk".....do they know that he says "yes" when in fact he means "no". All these things were racing through my mind as I left him there, crying my fool head off. One - because I am harboring such guilt with this act. Two - I am so unsure of myself and if I am doing something that will benefit him, or will he condemn me for putting him in "that place". So I go to my usual K Mart parking space where no one can see or hear me, but not so private that I appear suspicious, and cry my head off - again. Why didnít I go home? I donít know. Except perhaps this parking space at K Mart has become a refuge for me and itís becoming comfortable. But eventually, I did go home and actually went to bed. I didnít cry any more, but like my parking space at K Mart, it was my haven.
When I picked Jack up at 3:00, I naturally asked him if he had a good time. He said "no", but he shook his head "yes", so I think it really meant "yes". My next question probably should have waited, but I asked him what he had for lunch. No response, so I asked again. He spoke "Lunch was", "Lunch was", Lunch was", "Lunch was", Lunch was", "Lunch was", Lunch was", "Lunch was, .....approximately 40-50 times and lasted the entire trip home. As we were driving into our condo, he blurted out, "HAMBURG". It was a tremendous effort on his part to keep repeating the phrase in order to respond WHEN he was able to finally get the words out. In other words, he did not lose control of that thought...he held on to it, but the strain to say what he wanted to and still hold the thought was excruciating to watch and hear.
9/17/97 - Jack is attending Lealman 3 days a week - Monday, Wednesday and Friday -- so the next day he attended he greeted me at the door with a big smile on his face, threw open the door and shouted out "MEATLOAF",
10/1/97 - At the end of a ride up U. S. 19, we stopped at Stacyís Buffet for supper. When I saw him looking around, I asked him if he need to use the restroom and he said :"yes". Noticing a waitress at the far end of the restaurant I told him to ask her where it was. Being close enough to hear, I heard him ask her for a fork and she directed him to our server, but he instead went to the buffet and took another fork. Needless to say, minutes later he said he had to use the bathroom. This time, I went with him and asked an employee for directions and waited for him to enter and exit. Again, the "focus misplaced" syndrome.
Also in the past two days, he has gone to the mail numerous times, even after having picked up the mail, and has also gone to get the paper several times during the day at 25 cents a clip. Even as I am typing this, he is shaving for the sixth time today. Actually, although it is a repetitive act, I am grateful that he shaves by himself. Last month I was reminding him to shower and shave. I guess all the times I asked him to and he didnít respond until I physically lead him to the bathroom, are just being recalled now. When you think of it, it does make sense! ....Delayed responses, that it.
I noticed, too, that he will pour himself a glass of coke, bring it to the end table, and promptly return to the kitchen and open a can of soda and place it beside the glass. Subsequently, he will repeat this procedure and eventually have more than 3 or 4 glasses and cans lined up on the table. Sometimes it gets to me and I remove them and he will acquiesce -- other times, he will just return to the kitchen and get them again.
10/3/97 - Earlier in this text, I related an incident of "excesses" - the soda bit, having one, two and sometimes 3 beverages, (maybe soda, milk and water all on tap (beside him) at the same time. However, I am just beginning to notice that in addition to the several beverages on the table beside him, he is consuming tea and coke in huge quantities, partaking in the kitchen. Actually, I didnít notice just how frequent his trips to the kitchen were, but after each trip there, I followed him and noticed that the 2 quart pitcher of iced tea was nearly depleted -- only having made it around 3:30 p.m. this afternoon. It is now 7:30. Additionally, a 2 liter bottle of Coke is nearly half gone. I casually mentioned that he shouldnít drink any more -- that he would no doubt be kept awake during the night. He did, however, try to sneak some more and now that I am aware of the excess, I need to keep a closer eye on the situation.
I refer to this as "excesses" because this trait shows up in a lot of instances. When he pours dry cat food into the kitties" bowl, he will continue to fill the bowl until the container he is pouring from is empty -- not until the bowl is filled. Likewise, if he is pouring himself a glass of milk, he will pour until the container is empty -- not until the glass is filled. This particular trait also reminds me of the reversal of thoughts that he occasionally has. Is this a reversal also? Needless to say, it really taxes your mind when you attempt to second guess all the things he may attempt to do and in order to avert a tragedy, I must pare down sizes and containers of those things he may attempt to do.
Today when I asked Jack how many grilled cheese sandwiches he wanted, he said "ten". Yeah, sure. Now I KNOW he meant two, but he actually doesnít comprehend numbers any more. "One" is no different than "ten", in his tangled mind. The same applied to colors. Frequently he will look at a color blue, and call it red or some other color. If you donít know there is a difference, you would naturally guess at a color.
10/5/97 - Tonight I suggested that we watch a video - namely, RANSOM (Mel Gibson). I gave it to him to read the synopsis. Although I know his comprehension is lacking, but itís always been my habit to give it to him to read, so I do it as a matter of course. But when I asked him the running time (also a shared habit), he told me 21 minutes, instead of 121 minutes. To him, 21 minutes is the same as 121.
10/6/97 - New habit. An annoying one and one I hope is fleeting. I awoke at 12:45 a.m. to hear Jack in the bathroom shaving and washing up. I told him to go back to bed, that it wasnít time to get up. He did. I donít know if Iím the weird one or not, but the first thing I do when I awake is to look at the clock. Again at 4:30, he was awake and shaving again. Repeating, go back to bed, he did again, mystified. He really doesnít know if Iím the weird one or he is....but he really is confused that I am sending him back to bed and why. If you reason like Jack, "why would she send me back to bed if Iím already up?" See what I mean about "guilt"? How do you explain to someone who is confused, but cannot comprehend.
10/8/97 - Although we have not reached the point whereby I have to wash him, occasionally he soils himself and I believe it is because he forgets to wipe himself, rather than becoming incontinent. I usually can detect an odor and suggest that he change his clothes. But the ritual of getting him to wash is actually silly. . (I actually would do it for him, but keeping his dignity intact for as long as I can and the habit of caring for himself is important.) I fill up the bowl and hand him the washcloth and point to the area he is to wash - he will return the washcloth to the towel rack. I hand it to him again and tell him to wash. He will return it again to the rack. This will go on for several times -- maybe 7 or 8, before he gets that message and then he is OK to finish. This same ritual will continue when I try to retrieve his soiled undies. I hand him the clean ones and heíll reach for the soiled ones...again and again...even if I walk off with them, heíll follow me trying to get them back. Ingrained habits die hard!
10/9/97 - A visit to the Memory Clinic today revealed that Jack has lost another 4 pounds and weighs 172 lbs. now. That is now a total of 31 lbs. he has lost in the last 4-5 months. I had been weighing him at Publix inasmuch that my ineffective digital scale never gives a correct weight. However, my reliance on the Publix scale was as effective as my digital scale --I had thought that Jackís weight has mellowed out and was holding at 176, but according to Dr. Cohenís scale, he had dropped again. Dr. Cohen wants to see Jack in January and gave me a prescription for Aricept -- only, however, at my insistence. Dr. Cohen originally told me at the beginning of September that he wanted the experimental drug, Exelon , to be cleared of his system for thirty days and he would then prescribe Aricept, an always proven drug. However, when Dr. Cohen left the examining room, he quickly said "good-by....see you in about 3 months" and was gone, and I momentarily forgot to ask him about the Aricept. I asked Suzanne, the clinical nurse to ask Dr. Cohen if that was still his intentions and he agreed.
I see a steady decline in Jackís habits almost daily. If you ask him to do something, his focus is not on your voice. He has a mindset. For instance, tonight while helping me to set the table, he placed the butter on the table. Since we were having pizza and fruit for supper, I told him we didnít need the butter -- to put it back in the refrigerator. He looked at me....and didnít do it. I repeated it - "we wonít need the butter - you can put it back in the fridge". No response except staring for a long period. A third mention of the butter. Okay, no big deal -- I took the butter and placed it in the fridge.
He then removed it from the fridge and placed it on the table again. This went on for three more times.. I have to steel myself not to speak, otherwise I tend to raise my voice and that doesnít help me or him. Okay, leave the butter on the table. However, as we sit down fifteen minutes later to eat our pizza, the instruction about the butter just has reached his cerebellum and he removes the butter from the table and places it in the fridge. I keep telling myself that if I wait long enough, it will happen. This incident is certainly not an earth shaking event, and who really cares about the dam butter anyway. The point I am trying to convey is that this is a typical scenario (regardless of the specific picayune details), and that the communications are not open upstairs. When I hand him his toothbrush after meals, heíll put it away as I continually attempt to make him understand that he should brush his teeth. This goes on perhaps 20 or 30 times a day, different events, different details, and it does try your patience. The reason I continue to try and get through is that if I give up, what then? Will he not ever brush his teeth -- no, he wonít. Will he lock the door -- no, he wonít. Does it matter if he never does any of these things? Yes, I think it does matter. I want him to remain a part of our life together for as long as he can mentally and physically. I believe he will retreat deeper within himself if I donít try and make him communicate at least with me -- even if he doesnít with anyone else. On occasion, when his speech fails him and he just points out the window, I know he wants to go and take a walk, but I tell him when he can TELL me what he wants, then he can go. Invariably, in a few minutes, he will blurt out -- tttttake a w-w-w-walk, and Iíll say OK. Realistically, Iím not sure that forcing him to specify is a good thing or bad -- is it frustrating to him ? I donít really know. On the contrary, there is no one that can advise me, either, so I do the best that I can with my Irish-Finnish wisdom, such as it is.
Jackís fetish drinking enormous amounts of coke, water and tea is on the wan. Although he still may have one or two cans of opened Coke beside him, he isnít drinking them as fast and as frequent.
10/10/97 - Getting Jack ready for the Center was no small feat today. For some unknown reason, he became obstinate and refused to get dressed. He kept repeating "wellawellawellawellawellawella", more times than I care to write here. Although it was obvious that he was trying to say something to me, I did not know what it was and apparently frustrated him considerably. So I set about trying to get him to put on some clothes. Now although I am nearly of the same weight as Jack (sadly so....), it is more that a little difficult to try to get a shirt over his head when he doesnít want it to happen. After he stepped into his jockey shorts, I turned to get his
Bermuda shorts but, he had his underwear off almost immediately. This pattern repeated itself over and over with each piece of clothing successfully on, only to have him remove it, the end results being resisted forcibly and flailing his arms at me as though I were trying to attack him. To make matters worse, he kept yelling loudly, "ow, ow, ow", as though he was really hurting. Wonderful, I thought, for the neighbors! He had that look about him as though he were cattle being led to slaughter -- fearful. Frantically thinking of reasons, I wondered about the Center, although up to now, itís been a pleasant experience for him and he looked forward to going.. Now hereís where disaster hit -- Unfortunately, I dislodged his glasses, which he already had on, and the bow broke off and caught in his shirt, raked his face in two places and he began to bleed -- a lot! I became frightened, but actually it was only scratches, but required a bandaid to clot the flow of blood. Oh, great! Iím thinking...the people at the Center will think I beat him! This is my first experience with rebellion with Jack and I was not prepared for it. While only trying to dress him, I became forceful with him -- a big mistake. I was at a loss to reason why this behavior occurred now.
That is one of my biggest problems -- trying to reason "why" -- and there is usually no "whys", "becauses", or "reasons", but I seem to need that stretch for answers. If I could understand the "whys", logic somehow is easier to accept, but unhappily, there are no proven, plausible answers, therefore, no solutions. This isnít a problem to be solved, simply a condition to be accepted with no questions asked. See? I already know this because I can write it down, but to accept is to acknowledge the beginning of the end of our lives together. I am completely aware this is a very big, mega flaw in my reasoning. I think anyone faced with AD would also have trouble coming to terms with the end of two lives. I say two, for when his ends, spiritually, mine does, too. A psychologist or therapist no doubt would have a field day with my reasoning and I am not about to seek out answers for my behavior. Acceptance into the unknown world of the stranger that I live with comes hard, and has become not only a challenge, but a task that serves the purpose of occupying time, since I have so much of it without purpose.
10/13/97 - My first words to Jack as he exits the Center, is "what did you do today", is always answered with "yes". Although this is not answering my questions, it has become a part of the now normal routine and I think he would miss it if I didnít ask. My second question, "what did you have for lunch today" is also always answered with "yes", but this question usually stays in the forefront,, as he searches the remotes of his mind. He usually answers by the time we hit the driveway to the condo -- 4 miles and 20 minutes later. In the month he has been attending, the answers about meals are somewhat accurate, but this past week, the answer has been the same each day -- chicken. But today Jim, one of the aides, told me that the lunch consisted of pizza. So I devised a little quiz.
†††† Me:† What did you have for lunch today?
†††† J:†† Yes
†††† Me:† Did you have chicken?
†††† J:†† Yes
†††† Me:† Did you have meatloaf?
†††† J: † Yes
†††† Me: Did you have spaghetti and meatballs?
†††† J: † Yes
†††† Me:† Did you have PIZZA?
†††† J:†† NO.
And he smiled as he said "No" to pizza! Things are still working in reverse, although this trait is not always constant - it rears its ugly head spasmodically, stays around for a few days and goes into hiding for several weeks. Will I ever get this right?
10/14/97 - We are still getting two Tampa Tribunes almost every day now. Usually Jack gets the paper early before I wake up. But as I fuss around the kitchen cleaning up the cat food (that Jack dumps on the floor for the kitties" breakfast every single morning!), heíll pick the most opportune moment to go out again and get another newspaper, having forgotten that heís already been out there. I lay it at Georgeís door. I think that George thinks that Jack puts in a quarter and takes two papers. I must remember to tell George that itís a double whammy, instead of a scam against Tampa Tribune and their coin machine.
Gail Mellema told me today that Herman (who is in a nursing home with AD) is being medicated with Prozac and has shown remarkable results. Instead of speaking the halting one syllable words, he now can form sentences. Additionally, he has ceased crying.
Jackís introduction to Prozac was more than 18 months ago, when he was diagnosed with "depression" (so the doctors claimed) and at the time, I was warned not to expect any noticeable results for at least 8-10 weeks. However, the Prozac did not show any drastic or even slight changes in Jack. Not everything works with everybody, but I was pleased for Gail. I couldnít help but wonder why Prozac was not prescribed for Herman before this -- he has had AD for 14 years.
10/18/97 - For the next two weeks and on a trial basis, I have agreed to vacuum and dust Tulane -- four floors of it. I can do this during the time Jack is at the Center or perhaps I will engage him to help me with the Lobby -- weíll see. It used to be that between the two of us, Jack was the better housekeeper, but that has changed. His "neatnik" ways are a thing of the past now. I really miss seeing him retreat to the kitchen after I finished doing the dishes. Without saying a word, Jack would go out and "inspect", polish up the faucets, wipe down the counters and cabinets, give the floor a swipe and then he felt satisfied that the kitchen was proofed. I noticed that when we would visit his sister, Margaret, he would do the same.
I have mentioned in earlier text that Jack was oblivious to most requests asking him to do "something".. If I ask him to change his undies, he will say, "OK", but not do it. A second request and still he would not do it although I know he hears me. I didnít think of it as being defiant -- just heedless, and sometimes annoyed me. However, the action is only delayed, not ignored, as I previously thought. My thought at the time was that he was trying to assert himself, since he has been robbed of so many individualistic decisions of his own being. IF I WOULD WAIT, however, he would eventually change his shorts, but much later, as though he had tucked the thought aside in a special spot of his brain to be dealt with at a time of his discretion. In retrospect, the many orders that I give me in the course of a day must be, not only demeaning but, tiring. "Jack, pull up your zipp0er", "Jack, put in your hearing aids", "Jack, brush your teeth", "Jack, you need to take a shower", and most recent "Jack" wipe your nose, etc. Etc. (He seems to have lost control over his nose dripping -- I wonder what sensory controls this?) I feel and probably sound like a real shrew and must become terribly tiring for him listening to me constantly giving orders, although he does not react in an angry fashion, but still is docile in nature. In defense of myself, however, he is not conscientiously responsible for himself and occasionally, it is not always prudent to wait until he retrieves that little bit of information he has tucked away in the corner of his brain. For instance, when I try to tell him not to pour the milk until the milk bottle is empty (as compared to filling the glass), he hears but does not respond, so I find myself physically restraining him to stop the flow of milk onto the floor -- not an easy task. My objective is trying to keep him independent of me when I am not around. So much of my actions towards Jack are simply what I think I should do....this disease did not come with an instruction manual and Iíve not had any sharing of constructive alternatives in the few Caregivers meetings Iíve attended. I still have not experienced a caring, sharing enjoyable discussion to date. Perhaps Iím looking for something that does not exist -- I know I have my many moments of "poor me" and retreat to my parking spot at K Mart for a good cry. However, I would not be at ease sobbing nor venting my anger in a group situation. I believe this is the reserved Finnish side of my personality -- hold it in and above all else, donít reveal your true self. And even though I think I understand this -- psychologist that I am not -- itís difficult to be otherwise.
10/27/97 - When I arose from my sleep this morning, I noticed Jackís house keys on the nightstand and not hearing anything from within, I bolted up and sure enough, he was gone -- and without keys to gain entrance. Strangely enough, I noticed that the hidden keys on the balcony had been removed from underneath the chair where they were taped, but why didnít he use them????? He apparently knocked on Georgeís window next door and George was headed out to let him in. Even though Jack could simply go to the front entrance and pull the bell to ring in my unit and I could buzz the entry door open, the concept of the system is beyond him. This is the second time he has had to ask George to let him in. I hope this does not irritate George, but I know he understands.
Jackís reasoning powers seem to be on the decline. As an example, todayís weather was a wet one with tornadoes touching down in Largo and Clearwater. As I met Jack at the Center in the afternoon, I brought his poncho and an umbrella. Since the storm seemed to be letting up, the poncho was not really necessary but he put it on regardless and also opened the umbrella to negotiate the seven steps from the exit door to the van. He attempted to get into the van without folding the umbrella up -- an impossible task. When I told him to close the umbrella, he continued to try again and again, finally damaging the umbrella. He seems to ignore what you say, thinking that he is going to do it anyway. Itís as though he isnít hearing, but I know he does. Maybe this is a trace of his former personality of "I can do it better". In better times, he was always looking for "the better way" to do the most simple tasks and in most cases, he was correct in his thinking, being the perfectionist he was and possessing the analytical mind. I recall Vic Mazzarella remarking that it was one of the reasons he had such excellent teaching skills.
Now that darkness approaches by 6 p.m now., Jack can not take his usual 3 walks after supper. This eases my mind considerably. After supper is over, I am more at ease reading the newspaper, knowing that he is in the house for the rest of the night. Only recently, am I more uneasy when he walks, thinking each time that this walk may be THE ONE he may not return from. I try to reassure myself that everything I have read, and the advice from Dr. Cohen, is to allow him some freedom and some choices. I am also aware that because I am the dominent authority, he does need some freedom from me as well. It amazes me that every moment he is with me must be monitored, although there are those times when I must have some privacy to take care of my most personal needs, and thatís really nerve wracking. Although I try to become selective in my "orders", since some things do not bear mentioning or correcting, there are other times when safety and a generally acceptable behavior prevails and must be corrected. This is my "mother hen" syndrome.
10/28/97 - Jack had a exhilarating day at the Center today. As I arrived in the afternoon to pick him up, I observed 4 or 5 people with instruments leaving, and once inside, no less than four counselors greeted me with "oooooeee - is your husband Jack a great dancer!". The entertainment of musicians was secondary to Jackís dancing apparently, and he was the hit of the party. I remarked to one of the counselors that I never danced until I started dating Jack, and suddenly, I was a good dancer. Good only because
Jack was adept in whirling me around and catching me on the rebound before I made a complete fool of myself and somehow, he developed a rhythm in me I had not known about. My first husband, Harold, was not a dancer and nor did I ever see it at home growing up, although I remember reading in my Motherís school yearbook that she was an outstanding dancer. Although I played two musical instruments, the clarinet and sax, I had an ear for music, but the transference of a musical beat and rhythm escaped my body -- that is, until Jack.
I was so glad to see him happy. Most times, I donít know if heís happy or not and that upsets me. In my quiet corner, I sometimes cry when I think of that. Jack entrance into the Center was an ambivalent time for me, not knowing if it was for him or for me. As I have mentioned before, there is a tremendous amount of guilt associated with AD. Not only does it tamper with the AD patientís reasoning power, there is an aura of doubt surrounding your own., Enormous amounts of time are spent by families soul searching for answers that both benefit the AD patient as well as the caregiver, and as they say, never the twain shall meet. But reliance upon oneís intelligence coupled with an ounce of sense (if there is any left) may readily relieve that nagging conscience. (Or, at least, thatís what I tell myself.) Or is it because I have always relied so heavily Jack making the decision, or at least, the sharing of it. Who knows what is the right thing to do? It isnít like having to agonize over whether or not to call a plumber --- if there is a leak, you call a plumber. Itís over and done. Unlike the previous example, there is a period of mourning over each decision concerning the fate and care of the AD patient. Am I making this decision too soon -- or too late; should I have waited; will he be content; how will he do without me at his side and on and on. How I hate this part.
10/29/97 - This was NOT a good day. I have a leak in the kitchen so I need to call a plumber -- more money, AND I now have a broken vacuum cleaner -- more money. Reason to follow after this explanation........
Kathy Leasure, the property manager of Tulane, asked me if I would assume the task of vacuuming the corridors and lobby of all four floors. Although at first, the pay was going to be $100, it got reduced to $75 in order to pay an insurance premium of $25. for workers compensation The previous "vacuumee" was covered by her employer so this premium had to be assumed by the Tulane Association. And since only $100 was budgeted -- you know the rest. But itís $75 not presently in MY budget, so what the hell. I actually started the task last Thursday. Today after Jack returned from the Center, I asked Jack if he would help me vacuum the stairwells -- all four floors. Since I had to lug the vacuum up the stairs, I thought he could help reposition the 50 ft. Extension power cord on each floor, to reach up to each landing and plug in to the laundry room. BIG MISTAKE. His former analytical mind is a thing of the past, a fact that I keep forgetting. Repositioning the cords on each floor was a challenge that he couldnít figure out -- l think he must have been thinking "WHY is she plugging in this CORD?, or better yet, "WHY are we doing this?" I not only had to reposition the cords, but reposition him as well as I attempted to go up floor by floor dragging not only the vacuum, but the cords as well. As I unplugged the vac and the extension cord, he got behind me and plugged it in again. I tried to be patient, but he did this on each floor. . When I finished the fourth floor, I told him we would take the elevator down now, since the task was completed. However, as I entered elevator, I gathered the cords to place them in the elevator and he is tossing them out as I pushed the button for the first floor. Guess what? The cord got stuck in the sliding door of the elevator track and we were descending ---- !!! Naturally, it snapped off Thank God -- instead of it retracting and taking it back up with us in it! Thatís why I need a new cord for the vac. Long story, I know, but it took some explaining! But this is another example of him not comprehending what is told to him. He will continue to do a task when specifically told not to - not once, but many times. As we reached the bottom floor near our unit, I asked him to coil up the extension cord. Instead he plugged it in. I unplugged it again and asked him to coil it up -- again, he plugged it in
This continued on for three or four more times, until I physically restrained him, by standing in front of the electrical outlet, holding out my hand in front of him, saying loudly -- "NO -- donít plug it in." Even then, he attempted to go around me and push me aside so he could plug it in. I repeated my "NO" again and tried to close the door -- please note here that I am trying to control him and keep the cats in the unit as well.. It is enormously difficult to wear two hats -- one - to get a task accomplished, while attempting to allay his fears and frustration at the same time. His mind locks in on a single item and he remained focused on that one thing only. This is extremely frustrating for him as well as I, in spite of my awareness and empathy. More guilt, because I spoke harshly to him.
This brilliant idea of mine to have Jack help was not one of the best Iíd had. I had purposely waited until he was home so that he could help me, but I now know that I can accomplish more alone, without having to watch him and complete a chore as well.. Thank God for day care!
Several other instances that lacked cohesion and focus seems to happen all day. This was not one of his better days and unfortunately, I think he senses my impatience although I try to hide it.
∑ Although the chore of obtaining the Tampa Tribune for me is a daily one, today he inserted the coins into the St. Petersburg Times paper box -- not once, but twice. Now we have no less than three copies of todayís St. Pete Times, since we already have it delivered to our front door each morning.
∑ Later in the afternoon, I asked him to get me a Tampa Tribune. He returned to the apartment with the answer "no", and I assumed that there were none left in the box, since it was late in the day. Later, we went to the store and I noticed that there were some copies in the box and I assumed that he had difficulty in inserting the coins. On some days (not all) when he has 2 dimes and a nickel, he will insert the first coin, try the box and of course, it will not open because itís the incorrect change. Again and again, he will try, without realizing that he must insert each coin separately before attempting to open the box. We have been over this again and again, but he is focused on one thought and canít be swayed.
∑ As I was getting Jack ready for his shower (he was already dressed), he wouldnít take off his shoes to get in the shower. Again, short memory, long focus. The best way to overcome this (sometimes!) is just forget it and try again after some elapse of time. Today, however, it was getting close to the time we should leave for the Center, and I had to insist. He got that dark angry look and started flailing his arms again such as he did several weeks ago. I guess I was challenging him and he resented it. In a way, this is good news and I interpret this to mean that he still maintains some independence. The bad news is that it is hard to deal with.
By far, one of the most difficult affects of AD is that I feel I no longer belong -- to Jack, to anyone. I am very blessed that at least some of Jackís kids have been supportive. David is in touch frequently with cards, Email, and phone calls. Paul and his family in Celebration are also and I know I can count on them should I need them. When Paul first landed in Orlando (Celebration), he called every weekend for us to come over and that we could do something together. I always seems to have an excuse and now he doesnít call as frequently. I am not comfortable with driving long distances with Jack. I am afraid if we breakdown, I will lose him, or worse yet, have him try to get out of the car, which he tried once before. I guess I am a pessimist and just realizing it.
Unfortunately for all of us, people lives go on without you, hardly knowing that you are missing. They have become used to you not being in their lives, such as in death. But most of all, I miss belonging to a conversation about todayís events, or the funny thing that the cat did or that he threw up because of a hairball, or that the stores are now full of Christmas, and that I donít think Iíll have tree this year........my idle, idiotic droppings of inane things to say, but that kept us talking and communicating for all these 25 years. I really miss that.
When Jack does make an attempt at short phrases and it comes out all garbled and stuttered, I encourage him to say it again -- make him talk so that itís distinct. He CAN talk. If I donít make him, I think he will cease altogether to even try. I wish someone could tell me if Iím doing the right thing by nagging him to converse. He, however, continues to be passive in his personality neither showing delight nor sadness. One day I tried to quiz him on where we live, what is our address and phone number and he just clammed right up, refusing to meet my eyes. This tells me that he no longer knows, and he knows he doesnít know. On another occasion, I asked him where he would like to live if he had a choice and his answer astounded me -- "in a rest home", he said. I was so shocked that he would even be thinking along those lines and worse yet, what prompted him to say it now. Ironically, he said it clearly and without hesitation. Does he find that his present life is so frustrating and difficult that he would prefer to be confined? That does not sound like my Jack. But then again, my Jack is not my Jack any longer. Actually this occurred about a month ago, and it has preyed on my mind and become so painful to that I could not bring myself to enter it in this log until now.
10/30/97 - Tomorrow is Halloween and the Center is having a party. Costume participation is encouraged. Today I fished out from our jewelry box a Halloween pin I bought for Jack several years ago. Itís cheap, but cute -- a round pumpkins with a string attached at the bottom which, when you pull on it, a little white ghost pops up from the pumpkin. He always seems to like it. I doubt that he remembers it now. When I asked him if he wanted to dress up for tomorrowís activities, he said his usual "sure".
†††† Me: What do you want to wear for a costume?
†††† J:†† Sure
†††† Me:† How about dressing up in one of my muu-muus and wearing my hat?
†††† J:†† Sure
I got out my muu-muu and realized that I was much thinner when I wore it, but we tried it on anyway and it did absolutely nothing for him. I tried to think of something else -- perhaps go as a carpenter and wear his toolbelt? Jack said "no". I read a strange expression on his face -- I think he doesnít remember the ritual of dressing up at Halloween. The expression was one of uncertainty. If he did wear a costume and he was laughed at, I wonder what the consequences of that would be. I think Iíll pass on this one. I stand by one of the rules that have served me so well - "when in doubt -- donít".
At 7:45 p.m. Jack proceeded to make up his bed in the living room and I suggested he wait until a little later. He seemed to want to go to bed earlier and earlier. I also suggested that he wanted to go to bed early, he could sleep in our bedroom. For the past year, Jack has preferred to sleep on the living room sofa. Efforts to find out why he prefers the sofa have produced no results, except for the "sures" and "wows", so thatís been his bed for a while. Certainly not my choice because he is ruining the sofa.....but that a low priority concern. I also notice that when he comes home from the Center, he wants to nap but will walk instead. When he starts to nod, heíll tell me heís going for a walk and will return about 15 minutes later.
Prior to attending the Center and he was home, he did fall into a pattern of falling asleep several times a day. I would estimate that he would sleep at least 3 to 4 hours. And because he was sleeping on the sofa away from my scrutiny, I am at a loss as to how much he slept at night. This morning, however, I was awakened at 4:25 a.m. -- Jack was up, shaving and running the water, fixing the cat food and was preparing to open the door to pick up the paper. I was a little short with him and told him to go back to bed. (He had already folded up his bed sheets and blankets, but he promptly made it up again.). Needless to say, I was wide awake and wondered if I dropped off to sleep if he would be up again, so I stayed awake. I checked on him several times and he was asleep. When I finally arose at 7:00 a.m., I woke him and said to get up. When I give orders like this, I become his mother instead of his wife and I seriously wonder if he feels demeaned by my actions. Actually, there is no other way, since he is incapable of making objective decisions, but nevertheless, I feel so very guilty and domineering, and I wish I knew how he felt. I often think that perhaps some day he will get his fill of this shrew of a wife I have become and he will lash out at me. I have heard that some AD become hurtful and violent -- and believe me, I can understand that. So many times I counteract and apologize for being short with him and he looks at me like he didnít know what I was saying. Does that mean he doesnít notice the difference in our new roles? . And he doesnít mind? I certainly would, if it were reversed.
God, if you are listening this very minute, Iíd like to make a suggestion: For all the AD persons you have selected to have this malady, it certainly would be beneficial to us caregivers if you would place a Tinkerbell-type person on their shoulders to watch over them, guide them, and be a liasion for the communication that is now missing from our relationship. If you are going to put them in this position, please consider a buddy system to pave the way for them. They are so much in the dark and fearful of what they donít understand, but they canít tell us that.....Just give it some thought - OK?
11/1/97 - I am one day older than I was yesterday and for this reason alone, I am allowing myself the luxury of an excuse for being so impatient with Jack today. His actions, his speech and all that he did today was played out in reverse. Additionally, we both have bad colds (this is the second day), and my chest is so sore from coughing that it hurts to breathe.
†††† "Jack", donít open the door." (He opens the door).
†††† "Did you get the Tampa Tribune?" (He says "yes") "Where is it?" ("Yes", he says) It isnít anywhere -- he simply didnít get it, but he wonít say that. This scenario was played out twice.
I saw him looking around the living room and the bedrooms, as though searching for something. When I asked him what he was looking for he said "fine" (?). A second and third question produced a "yes" answer. He then stood over me, staring intently as though trying to convey something to me (he really thinks that he said something and it is I that is not comprehending) so I asked him "what do you want?". He pointed to his nose and said "fine" again. It occurred to me that he has been using an inhaler for the past two days and now it was missing. I was right. When he changed his clothes last night, he left it in his pants pocket. Now he is content. Little things upset him and I need to become more aware of the things he considers important.
The entire day was one I hope is not repeated any time soon. The essential means of communication between us is almost nil and very difficult and I donít know just what to do. The answer to that is, of course, -- nothing. I can usually tell when he is upset or confused, although he doesnít say what is troubling him -- but he grunts or "ooooh---ooow" sounds until I go over the happenings that occurred during the day to determine what is bothering him. I am ashamed to say that I also get frustrated and upset and unfortunately, there is no one to help me alleviate my frustration and I get angry at myself and start to recite the rosary -- not only to reclaim my sanity but as a penance for having become so impatient.
Additionally, I felt so rotten with this cold I didnít feel like doing anything except sitting and reading. When Jack stepped on my little baby toe, it hurt so bad but rationalized I felt I deserved a little hurting for my Ďpoor myí attitude.
11/8/97 - Last weekend, I recorded Jackís frequent walks during any given day.
†††† 8:15 a.m. †††††††† 11:00 a.m.††††††††††††† 1:45 p.m.
†††† 9:05 a.m.††††††††† 12:00 Noon††††††††††††† 2:35 p.m.
†††† 9:20 a.m.††††††††† 12:45 p.m.††††††††††††† 3:00 p.m.
†††† 10:00 a.m.†††††††† 1:15 p.m.††††††††† 3:30 p.m.
Although the walks are brief, they are frequent. Sometimes they last for 15 minutes. He is only home for about 5-10 minutes before he will announce he is "going for a walk". I have impressed upon him that he MUST TELL ME that he is going for a walk, for several reasons. One -to keep me on my toes that he has left, and secondly, to keep him communicating. At times, he has difficulty getting the words out, but he is aware that he has to tell me, so he will sit down as if to collect his thoughts -- and this does take some effort on his part -- before he blurts out IíM GOING FOR A WALK. Frequently, he experiences some difficulty in organizing the words and they donít come out just right and I will not pursue it further -- but so far, this little bit of communication seems to be working well. I certainly donít want to frustrate him by demanding that he do this and do that, but I feel itís necessary for him to talk. Otherwise, he wouldnít. I am also of the opinion that there must be some codes or rules he has to follow. Maybe "rules" isnít the correct interpretation but for lack of a better one, weíll use it, anyway. At times, he will look fixedly at me, his brow is furrowed, as though he is saying "OK, read my mind, so I donít have to say it". Also, at times, I know what he wants, but I want him to speak it -- say it. Of course, there are many more that I donít have a clue to what he wants and I have to tell him that I donít understand -- that he must tell me. That, sometimes, goes wanting -- unsaid. What must be so terribly frustrating for him to articulate is equally so for me to interpret.
Jack also shaves frequently and because I believe he actually forgets he has done so. This morning before 10:00 a.m. he shaved seven times. On one occasion, he shaved twice before leaving the bathroom - first, before he used the toilet and secondly, after. He also uses the toilet frequently. I donít know if itís because he forgets he has already gone only minutes before, or he has an actual need. In the brochures I read, it mentions this peculiar habit as being a common occurrence. However, I do not wish to brand Jack with this if, in fact, he really has to urinate. But upon entering any store, regardless if they have public restrooms or not, Jack must visit the "head".
11/11/97 - Although I donít believe Jack actually comprehends what he reads, he always has the daily newspaper on his lap as though he were reading. The odd thing Iíve noticed, however, is that in the evening, he does not have the light on, but when he has finished reading, he turns the light on. He must associate the habit of the light with the newspaper, but has forgotten the sequence of "on" and "off" and their meaning.
We have experienced a drop in temperature during the past week and I was delighted to learn that our condo unit does not cool off drastically, such as our previous house did. During this cold snap, the temperatures were between 50 and 60 in the early morning as well as in the evening, but our condo unit temperature did not register below 70 even during continued cold days. In fact, the heat never came on. Accordingly, we did resort to jackets and sweaters for outdoor wear. But Jack honed in on the jacket-wearing, and when the weather warmed to 75, he continued to don his jacket during his walks. When I told him it wasnít necessary, he seemed confused, so I let it slide. Ironically, when the weather turned cold, he continued to wear his shorts along with his heavy jacket. I suppose he must have been comfortable, but it looked strange, and unfortunately, what looks strange to others, immediately gets labeled in other peopleís opinion. I told him that if he was wearing his heavy jacket, he had to change into long pants. Some habits seems ingrained whereas others defy logic.
11/15/97 - What I used to take for granted, now keeps me on my toes making sure his basic needs are met. Now I do not assume that he brushed his teeth, or put on deodorant, etc. I have created a cranium mental check list as we leave home........keys, wallet, inhaler (for which he has developed a fettish), comb, hanky and I even check jockeys, shoes and socks, and other obvious things. And, of course, I check his wallet frequently that his identification is still there and updated.
Speaking of identification, David, has offered to sponsor Jack in a Safe Return Identification Program offered by the National Alzheimerís Association. I am grateful for their concern about his safety. Each time he leaves our apartment, I wonder if it is the last time I will see him, although he has not failed to return from his walks within 15 - 30 minutes. I am particularly stressed about this since I have been forewarned many times by well-intentioned friends and all of the written material emphasizes this particular trait. In my conversations with not only his physician, but the trained counsellors at Lealman Adult Center, they advised that "if it ainít broke, donít fix it" attitude. That he may not be a "wanderer" -- itís not a given. Another consideration, they advised, is that he must be allowed some freedom in order to maintain some semblance of independence. Perhaps these frequent walks are a sign of him establishing or maintaining that independence.
Jack is, however, losing his ability to speak and comprehend simple instructions. While I have mentioned this before in this text, it is increasingly becoming another lost essential sense. I also have related that when I try to coerce him to speak, my intent is to maintain his speech, rather than punish, as some people see it.. I now think that I have been wrong in this respect. I think forcing sends him deeper into his shell since I think he knows he cannot articulate freely, but is trying to please me. Wrong, WRONG.
Today I had three pieces of mail I wanted to get posted by tonight. Knowing that Jack sometimes will place mail in the outgoing mailbox AFTER the mail has been delivered, nor will it occur to him to see if it has postage on it, l will take it myself to the nearest mailbox to go out that very day. As I was getting ready to go out, I laid the mail on table to take with me since the mail had already been delivered to the condo and said -- "Jack - donít put these in the mailbox". He replied "NO". I should have known better but I think I gave him the idea. As I got up the road I realized that I had not taken the mail as I intended.
Remembering that I did not see them on the table, I asked Jack if he mailed them....he said "NO". Again, rephrasing -- "did you mail my letters"......reply: "NO". I returned to the apartment to retrieve them but did not find them in the usual places. Returning to the van, I asked Jack, "did you put the mail IN THE MAILBOX?". "YES", he replied.
I am not faulting Jack for something I should have done, simply pointing out the lack of comprehension. Ordinarily this would not be an issue, but this particular instance was crucial that this particular mail be posted on this date. Now the mail will sit in the outgoing mail box until it gets picked up on Monday. Drat!!!
I splurged today at Publix and bought us each a cannolli for supper. When I asked Jack if he liked it, he said "NO" (he had it half gone). I asked again...."is it bad?" He said "YES". As he took the last bite, I asked "is it making you sick?". "Yes", he said, as he swallowed the last morsel.
I was testing Jack the other day and asked what our address and phone number was. He remained silent, but started the staring bit, as though he knew I was saying something, but he was trying to understand WHAT I was saying. He never answered me. I am thinking ahead to if and when he becomes disoriented during his walks. If someone asks him if he is lost, he is liable to say "NO". Then what?
11/19/97 - Jack has developed a fettish for carrying around a Vicks inhaler due to a recent cold and has latched onto it like a child lugging a well-worn teddy. Although he no longer requires it, he becomes agitated when he misplaces it, and feverishly darts from room to room looking for it. Before I realized what it was that he lost, I asked him what he was looking for and he kept repeating "hearing aids". I told him he had his hearing aids in his ears, but it made no impression. Apparently, he has attached this name -- hearing aids -- to the lost object. He kept patting his pocket in his shirt, so I finally deduced that he had lost his hanky or the inhaler. Similarly, several days ago, he was looking for something and kept grabbing my shirt, saying "keys...keys,....keys". He had no reason to use my keys so I kept questioning him...."what keys", and I ultimately determined that he wanted the quarter in my pants pocket to get the newspaper.
11/20/97 - A nurse at the Center told me an interesting theory (note the word "theory", since a diagnosis in this ill-fated disease is still purely conjecture). She said to imagine that Jack was a space alien and sported two antenna - one is a transmitter, the other a receiver - and there is a connecting wire that allows interaction between the two antenna. Now, imagine that in Jackís case, the connecting wire is missing. Therefore, both receiving and sending information is severely delayed or does not compute at all. This is probably the most innovative explanation and, to me, the most reasonable for this lowly simpleton to comprehend. My experiences with Jackís comprehension fits that explanation to a tee!. For example, when I ask Jack what he had for lunch at the Center, there is usually no response at first. One reaction is that he looks at me, knowing I have said something and I can see the struggle going on within him wanting to answer. His eyes dart about, he tugs at his clothing and the sounds that eventually come out are generally not appropriate -- sometimes he gets stuck on an "f" sound and it lingers there for a bit. Heíll look searchingly at me as if to say "is that the answer?" Another reaction is one that it appears as though he did not hear and stares straight ahead. If I ask again (in the event that he really did NOT hear) and get no response, I let it drop.
However, he will respond later -- "later" being from 10 minutes to as much as 2-3 hours later or on occasion, the next day, and the answer will be a simple one -- "chicken". The third response I get is rather comical and will indicate that there is some memory still left. As I pick him up at the Center in the afternoon, heíll leap into the van and immediately blurt out "CHICKEN!" before I can get in my usual "what did you have for lunch" question. So why do I ask every day? I guess itís a throwback from school days when my boys were in school. They usually paid for lunch at the cafeteria and that was the conversation when they returned home from school.
In my now-frequent self analyzing, one reason to ask is the importance of communication, despite the fact that he cannot. If I didnít talk would he also forget to do that? So I talk....... The other reason is that I need to talk -- to someone, something, anything. Our lives have become so cloistered and we only have each other. There are some days when I take Jack to the Center that I just want to be by myself and I hole up in the apartment, turn on the TV just to hear other people talk to each other. I do, however, realize the importance of interacting with people and I literally force myself to call someone, go to lunch with someone or just prowl through the stores and just make general chit-chat with other shoppers or sales personnel. I can empathize with other caregivers need for solitude, however. We are a select group.
Unfortunately, the populace who have not been exposed to AD is not necessarily kind nor understanding. When Jack and I shop together, Jack may occasionally run the cart down the middle of an aisle. Expect to get snapped at if socially accepted behavior pattern is not followed. Although this irritates me, I generally follow the drill and get out of their way. My mother hen instincts surface often. I have been known, however, to get real close to an offenderís ear and whisper "lighten up, sister -- he has AD and doesnít understand". This usually hurries them off to the next aisle, thoroughly ashamed which was my initial intent, albeit devious and vengeful.. Manís inhumanity to man needs to be addressed more frequently.. This writer, however, could use a crash course in subtlety.
11/28/97 - In preparation for Thanksgiving, I had purchased two half gallons of eggnog and I found Jack filling the cream pitcher with eggnog for his morning coffee and cereal, mistaking it for the milk he usually uses. In his mind, the bottles are similar. So thatís what he used. In fact, even when he tasted his coffee, it didnít occur to him that it had an odd taste. Even though I replaced the eggnog in the pitcher with his usual milk and mentioned that he had used the wrong bottle, he continued to use the eggnog and took it from the bottle in the refrigerator. This is one of those mind set occasions when nothing will -- he will do what he wants to do. In some ways, this behavior may be a hint of him trying to hold onto his independence and a subtle way of saying "back off - I know what Iím doing".
11/29/97 - This is one of those "pity-pot" days when I say to myself "I canít do this anymore", but of course, I will and I do. The one lost sense that really bothers me is his lack of communicating. The only sentence he can form now is "I am going for a walk", and that is because I literally forced him, telling him he couldnít leave the apartment unless he told me where he was going. Tonight I tried to get him to say "water" or "knife" by showing him the item and repeating the name, but all he would say is "yes", as though agreeing with me. On occasion, he would name an object incorrectly, although the meaning may be similar, i.e., "stove" for "refrigerator", but now I seldom hear him say a single word.
His recurrent words are "yes", "no", and "sure". "Wow!" used to be one of those words, but that has been forgotten now. Maybe thatís just as well -- I was getting tired of "WOW", but now "FINE" has replaced "WOW"..
12/2/97 - Today I was introduced to the dreaded phase of incontinence. Everywhere I look there is excrement -- I swear if I looked real hard Iíd see it hanging off the wallpaper -- it IS that bad. I noticed it when Jack returned from the Center, but as I began to clean up EVERYTHING, I can see that was not a recent "deposit" since the consistency was not moist --. Without too much graphic detail, my intention in recording this event is so I can further document any acceleration of this phase, or hopefully this may be an isolated incident. Pray for me, please -- I will fervently! I have been dreading to face incontinence, not only because of its nature but because from what I have read and heard, it is one of final stages of deterioration. Another final -- how I hate that word! Here comes the graphic part -- again mentioning it only to signify the degree of what I experienced and what I will have to remember in order to gauge its severity. I first noticed it all over my white blanket. Further investigation revealed a pair of messy jockey shorts in the hamper, no less. They were full of excrement and wet, so I suppose he attempted to hide them from me, which now accounts for his wet pants. I still suspected, however, that the jockeys he now had on were messy also, since I knew he hadnít yet cleaned himself up. Yup.. . . .they were. When I attempted to get him in the shower, he developed what I call "deaf" ears, and he would have no part of a shower! He still hangs on to some independence and becomes balky at times. Actually, I have always felt "GOOD FOR HIM" for that trait -- except for now, as Iím trying to clean him up. I literally wrestled him into the shower and had a really difficult time trying to get him to bend over so I could wash him -- It was like trying to bend an iron pipe. He doesnít understand most instructions now, such as "lift your leg", "bend over", "give me your arm" -- he just fights me as though I were trying to hurt him, flailing his arms and ducking away from me. This literally turned into a wrestling match, with Jack breaking my glasses when he knocked them off. Additionally when I finally got Jack cleaned up, I had scratched him with my fingernails badly. Now comes the part of cleaning up his shoes, his pants, the sofa bed, the rugs, the boudoir chair... ....all over the apartment, actually. He seemed to be oblivious of the mess I was cleaning up. He showed no reaction or embarrassment, like I thought he might when this happened. I have been warned about incontinence by several people but still was unprepared for this still another loss of sense.
I have also been warned about the wandering, but up until now, I have mentally talked myself into the fallacy that the walks were a form of therapy for him.. It seems like itís the only thing he has that he likes to do and he always comes back. I tried to quiz him today about identification should he become disoriented ----- Name? "Jack". Last Name? "Fine" Whatís your address? "Fine". Where do you live? "Yes". Should he become bewildered or disoriented, he would not be much help to himself or anyone else if he couldnít tell someone his name or where he lived. I have provided identification for his wallet, but should he be attacked or robbed, that would be the first thing taken. Iím not quite sure how to handle this or tell him he can no longer go walking any more, but now I feel I must. I donít want to get us in a position of "I wish I had".
Last night I told Jack that he cannot take a walk in the morning. His usual routine in the morning is to take a walk directly after he dresses and even before he makes his breakfast cereal and a banana and even before I get up. Actually, I told him on two separate occasions.
12/3/97 - I was genuinely surprised this morning that Jack remembered that I had said not to take a walk. He actually remembered from yesterday to day! Now what? With this giant step, do I now let him go this afternoon? Perhaps this will be like other items....he will forget.
Later 12/3/97 - Jack remembered I had said not to take a walk. Albeit cruel, I am experiencing a brief period of non-worry since he is in the house and for as long as it exists, I will take advantage of it.
12/6/97 - It took until today for Jack to remember that he likes to walk, and late in the afternoon he told me he was going to take a walk. I melted and said OK. Weekends are hard, not only for Jack, but for me as well. There is not much activity for him and have run out of ideas to do that can be done in this "box abode".
I prepared turkey sandwiches for lunch today -- (yes, we are STILL eating turkey, but we donít mind -- we both love it) Furthermore, we will be holding services over the carcass because I am boiling the bones and turkey soup will emerge for supper.
Jack is walking on a continual basis again. I am proceeding on the "if it ainít broke, fixing it" premise. However, I still insist that he can go only if he can tell me where he is going. That is the one of two phrases he can utter - still with difficulty, however. The two phrases are:
∑ I am going for a walk.
∑ .......to get the mail.
12/8/97 - His level of comprehension and understanding is slowly diminishing. Today when I asked him to give me the paper, he handed me his sneakers. Not once, but three times repeated finally got through to him. At the supper table, I asked for the butter. Jackís time to respond is about 30 seconds -- not a great deal of time, Iíll admit -- but ordinarily when someone doesnít respond within that time, the first assumption is that he/she did not hear. I have to acquire patience. The first time, I got the olives, the second time, the cranberry sauce, and since there was simply nothing else, I finally got the butter. In these instances, I donít believe he doesnít understand, only that he has a mind set of his own. When I am repeating my request, his mind is blocking it out because he can only concentrate on one thing at a time. He appears to ignore you, but I 0think the memory banks are busy for the moment. Does that make any sense at all? Likewise, when I asked Jack to turn up the television, he changed channels and kept changing channels, although one of the absolutes that he remembers is that the Golden Girls are on Channel 38, which we happened to be watching at the moment. When I repeated to "turn it up", the response was unchanged, even though I waited patiently before I repeated myself. After some time -- about 10 minutes elapsed while he continued to change channels -- I went and stood by him and showed him the key on the remote control, i.e., s (volume) , that would increase the volume. However, he continued to change channels. The only difference between the two sets of arrows is that one says "channel", the other "volume". Can he not differentiate between the two, or is he only seeing the arrows? I still find it incredible that some of these built-in memory bytes have been lost, but another of his lost skills is reading. When I point to a word and ask him to repeat, he either doesnít understand
my request or I think he does not know the word and cannot articulate ..or perhaps the reason for his silence...? Itís hard reaching a conclusion. . Itís rather like at "catch 22" situation.
12/9/97 - Although we have had some cold weather since Sunday, 3 days ago -- 42 -- today was warmer and was anticipated to reach 79. In spite of the warmer weather, Jack is now conditioned to donning a heavy jacket and continues to wear his flannel pajamas. No amount of coaxing will convince him that he can now switch to cotton pjís and no coat. Usually, something like this is of little consequence that I would not make an issue of it. But, there are occasions when overlooking a situation is not a choice. When I dropped him off at the Center this morning, I took his jacket from him and placed it in the van, knowing that he would not need it today. However, at pickup time, he was wearing someone elseís RED jacket which was considerably smaller than his own. I told him that the jacket was not his and belonged to someone else, and to put it back in the closet. He then came out with still anotherís GREEN jacket, also in a smaller size, the sleeves almost up to his elbows and unable to zip it up. But telling him to put THAT one back also, that his jacket was in the van, did not register with him. So I physically had to undress him with him flailing him arms at me, resisting, and me trying to remove the inappropriate jacket. When this happens, I say a quick prayer to instill an extra pint of patience. The unfortunate part of an episode like this is how it affects Jack. He knows that he has done something. (I think his uncanny strive for perfection kicks in and hence the reason for the flailing of the arms?). His "basset hound" look, his attitude of defeat will stay with him for several hours. Since reasoning with him is at an all time low, anything I say falls on deaf ears, and nothing I can say will brighten him up -- sometimes until the next day.
12/10/97 - Today was another "sh----t day" with remnants of his excrement all over the apartment. I check him about three times a day -- before he goes to the Center, when he returns and before he goes to bed. I abhor the very thought of even saying to him "let me check your shorts". How degrading and humiliating for him! However, he does not appear to be embarrassed nor does he seem to resent being told to "drop your pants". Jackís previous self was one of perfection -- neatness and cleanliness above all else. He would NEVER be caught unshaven or with his hair uncombed. Everyone who knew him or was close to him soon tired of his perfectionist ways, although I sometimes entertained the notion that they may have been somewhat envious. His tools, his vehicle, and person was always neat, clean and sorted. Jack was not one of those workman who just threw his tools and materials in the back of his truck at the end of the day. All his tools had to be cleaned off, restored to their proper place and materials stacked and sorted according to size and type. Jack was always prepared, knew where everything was.
So this new habit is somewhat demeaning for him, although as I said, unbeknown to him. I cry for him to see him like this, but I guess actually I am crying for me to have lost my greatest love. I sometimes get angry at him for his odd behavior and feel so much remorse at my bad behavior, but I think if I didnít get angry, Iíd be crying all the time. Even now, I cry every day I let him off at the Center, and cry when I pick him up. How do other people survive this? Am I that weak?
I now see the reason why I bought those Depends. . Although we (Jack and I) have only had one experience of incontinence -- last Tuesday, I can see the handwriting on the wall of the beginning of incontinence .. I thought the most difficult part would be getting Jack into a diaper-type garment. I had visions of myself and he on the floor and trying to position him on this large white Vee. I remember Gayle Mellema telling me her experiences with this. On the contrary, Jack laid down on it when I told him to, which I found odd, as though he had been through this before.
The difficult part was trying to clean him up -- simple commands with words like "bend over", he could not grasp. Trying to get him to take off his shoes and socks before taking off his trousers produced nothing -- he just stood there. I attempted to explain what I was doing -- "take off your clothes"......... "we need to take a shower" ......... he had absolutely no awareness of the situation at hand.
One thing I need to address here on this date 12/10/97 is the discovery of female-garments - such as those found at our previous address, What I found in Jackís PJ drawer was panties - most definitely not mine. I have no idea where he could have gotten these. We have only been in this home 4 months and everything that was moved here was touched at least twice - once to pack and twice, to unpack. It is not possible that these were moved here, but where did they come from? I have tried to think -- picked up by mistake in the laundry? NO. -- is it possible he gets them on his walks? Maybe from someoneís clotheslines? This is the only time he is not with me except for his time at the Center and because of the close supervision there, I doubt they came from there.. I have such a fear I cannot even think about it.
12/11/97 - My first adventure with the disposal diapers was a positive one --one of surprise that Jack adapted so well to wearing this "raincoat" without fuss or ado. However, the second experience (this morning) was not a repeat of the first. Jack fought me off like a lioness about to lose her babies, flailing about as though he didnít know who I was as I attempted to clean him up. Jack threw my glasses off several times (great! Now I canít see) Simple commands to "move your hand", "hold this", "sit down" were all tugs of war to make this raincoat baby happen. And, while we were "dancing", an eruption occurred -- YEP....!! Another one -- this one a real cow pie. Pardon my cynicism. If I didnít find a little humor about these incidents, I would either become very angry or very depressed. After I got Jack re-dressed for the Center, I faced the chore of cleaning the sofa on which he sleeps, the sofabed in the spare bedroom, my bedspread, his bathroom and rug and everything he had touched or sat on. Additionally, it appears that he does this in his sleep, perhaps not recognizing the urge for a bowel movement. He did, however, get up and change his pajamas, but not his shorts nor diaper. It took me a full morning, not including the laundry, to clean furniture, shoes, and carpeting and even walls. Methinks that to some degree he DID know that he had a bowel movement, since he walked around the house with it on his feet (hence the carpet mess) and didnít have a clue what to do about it. By the time I awoke, the excrement had somewhat dried. I was not exactly in the mood for Cheerios this morning. The other matter that comes to mind is that the Center will NOT accept people for day care that are incontinent. However, a little fraud for as long as I can contrive it is what I have to do. Lord.....! Youíre really pushing it...... Whatís next?
12/13/97 - My latest gestapo command (thatís what I feel like!) to Jack now is "let me see your pants", and sadly, he drops his pants without complaint and without any sense of remorse or embarrassment. While this practice is not meant to embarrass him or even try to make him aware, I am trying to avoid the mess and cleanup time. I have tried to monitor his movements in the bathroom, making sure that he goes before he hits the sheets at night. At first, I tried to be casual about it -- "do you have a mess in your pants?", a phrase that sounded oddly familiar some 40 years ago when the children were small. Ironically, Jack said "sure", although when I checked, he did not. If I had said, "you havenít got a mess in your pants, have you?", he would say "no". I must carefully choose another line of questioning in order to get the answer I want. But what? So far, my best defense is to sidle against him and take a good long whiff, a gesture also learned some 40 years ago. I fear this is one more nail in the coffin in the long good-bye process.
12/13/97 - This was a long, soggy weekend and we are approaching our fourth day of continuous rain with more expected for the next two days.. This eveningís news related all the horror stories of those families whose homes are being flooded. While I abhor the cynical side of myself, I canít help but wonder why this is considered such a catastrophe now? The oldest and northern neighborhood of Riviera Bay were experiencing that very same episode whenever their was a lingering storm in the Gulf or in Tampa Bay. Ironic to think that no one ever thought then that it was a big deal. But I am glad I do not have that worry now with Jackís current mental state. This thought in spite of the fact that I still miss my home, but I believe I did the right thing by moving.
I asked Jack tonight to get me a Tribune paper right outside the building. Since it was raining, I handed him the umbrella and realized he did not have the foggiest idea of how to open it. Simple, repetitive tasks that you do without thinking about seem to boggle his mind. The sad thing is that he believes that all these contraptions are new, having forgotten that he previously used and operated them.
12/17/97 - This was a day I would rather not have lived. As I turned the corner from 9th Street N to 34th Avenue, traveling east about 9:40 a.m., I noticed an elderly man and woman riding two-wheeled bikes, also headed east. Although they were hugging the curb and the woman was several car lengths ahead of the gentlemen. In order to give them ample room, I veered to the left and straddled the far lane. I specifically recall looking in my rearview mirror for any other vehicles, since I was approaching a downward hill on 34th Avenue. I did pass the man, doing approximately 20-25 mph. Suddenly, the man was beside me and before I could avoid him, he was flung up on the windshield of the passenger side. In a split second, he was thrown face down on the dividing line in the road. He laid still at first, and because I was screaming, it alerted the woman and she rushed over to help him. There was no other people about and I tried the nearest house to call for help, but it had a locked gate. In what seemed like several minutes, but probably was seconds, a car traveling west stopped and had a cellular phone and called 911. A city ladder-bearing fire truck, Sunstar Emergency and a city paramedic responded first, with two police cars following. Patrolman Foreman and a policewoman whose name I did not get, interviewed me and later confirmed that I was not at fault and instructed me not to harbor any guilt about it since it was an unavoidable accident. The gentlemen was 87 years old. Patrolman Foreman confided in me that the law enforcementís primary goal a few years ago was to reduce the number of accidents in the 80+ years category. They succeeded in doing that, he continued, only to have those who ceased to drive now climbing on bikes. He further added that if a person is not qualified to drive a car, it also applied to bicycles. It did not, however, quell my fears about the condition of the gentlemen. A concerned paramedic came to see if I was hurt, but I assured him I was not -- only emotionally upset. The paramedic told me that the gentlemen sustained a serious cut on his cheek and would require stitches and could possibly have a broken rib,, although he mentioned that it could have been an old injury. Supervisors from Kash ĎN Karry were also on the scene and also came over to me to offer aid or assistance to me. How very kind of them.
Although only 45 minutes had elapsed, it was the first time I looked at my van. The windshield was shattered, the main damage being on the passenger side, but nevertheless it was skeritted across the driverís side also. Damage to the body of the van was minimal. A 3" dent ont he seam of the hood opening and the body, and several scratches near the wheel well on the passenger side, supposedly left by the bicycle.
The officers strongly suggested that I get the windshield taken care of today if possible, since it is illegal to drive a vehicle with limited windshield vision. And although I attempted to do so, I could not make arrangements.
I went directly to State Farm at Karen Wornickiís office to make a report of the incident and assigned an adjuster. The clerk also gave me a contact number that would assist me in getting the windshield replaced.
I now wondered what I should tell Jack. If I had been able to get the windshield repaired prior to picking him up at 3 p.m., I perhaps would have said nothing. But the shattered windshield was hard to avoid. Before he left the Center, I said "I had an accident. I was not hurt. I am getting the windshield fixed tomorrow". I deliberately kept the facts brief. I am not certain if he absorbed anything at all, but he said "fine", his usual comment. The next day he did not mention nor notice the new windshield. I believe the incident was thankfully erased from his mind. I am grateful that Jack was not with me to experience the accident. Thank you, Lord! I know youíre watching over us!
The pessimist is taking over, however, If this gentlemen recovers sufficiently, I worry about any further repercussions or health problems that may surface as a result of this accident that may not be evident now. If there is any family about, will they encourage him to sue my ass off? I worry........
12/21/97 - The weekends try my patience sorely. When I ask Jack to do something, he only hears or comprehends part of my request. For instance, I asked Jack to remove the soup bowls (where he had placed them and I canít reach them) to another cupboard. He took them down and promptly placed them back in the same place. 2nd Request: "Take the bowls down". Put them over here (pointing to the spot in the cupboard)". He took them down and put them on the counter. 3rd Request: "Jack. (Louder this time) Put the bowls here (opening the cupboard and pointing to the shelf). He placed them back in the original spot. Without going into it further, this went on for seven times until I finally got smart and told him to sit down and I got my stool to climb up there and do it myself. But no -- he continues to take them down and put them back, again and again. I was afraid he eventually would drop them so I again took them from him.
Earlier in the day, he came to me jingling his keys and said "Mail", which usually means that he is going to get the mail in the lobby. I told him he didnít have to go -- it was Sunday and there was no mail. Now -- I have to become smarter than I am -- I should have just let him go anyway. Later, however, when I asked him to toss the garbage in the chute (next door), he tied up the plastic bag and left the apartment. When he was gone longer than he should have been, I opened the apartment door and saw him coming from the lobby area. After he entered the apartment, I traced his footsteps and he had placed the garbage bag on the outgoing mail box. See? He remembered something about the mail -- he didnít know what -- but it had something to do with the mail. So in his befuddled mind, he mixed up the two signals.
Shower time: Jack cannot take a shower without me guiding about the steps necessary leading up to and entering the shower stall.
∑ Take off your shoes
∑ Take off your socks
∑ " " pants
∑ " " watch
∑ Get a facecloth
∑ Have you got a towel?
Working with AD people is not a matter of training THEM, but re-training yourself., Example: Although Jack is now taking a shower alone, I have had to train myself to test the waters first, i.e., to get a moderate temperature, otherwise, he will step in first and immediately turn on the cold or hot water, which will send him screaming out of the stall and worse yet, is not geared to reason why.
Dinnertime: Approaching Christmas now only 3 days away, I used most of today to cook -- cookies, brownies, and muffins. Tomorrow and Tuesday, I will make pies and a cheesecake. I popped two chicken thigh/legs in the oven and made yellow rice. Jack looked at this chicken on his plate and was stumped as to how to approach or tackle this "thing" to eat. He has forgotten how to dissect or de-bone a chicken. When Jack encountered the leg bones, he kept turning it over and over as though he were looking for a "way in". As I realized what was taking place in his mind, I started to cut it up for him, and then placed it in his hands and said "pick it up and eat it". However, that seemed foreign to him, so I let him hack away at it. Strange, what?
12/25/97: Christmas Morning! Jack was like a kid opening presents -- not to see what was inside, but just the excitement of opening so many presents. He was tearing away at each one without looking to see who it came from or even what it was. I remember when the boys were babies and toys did not yet have any significance, but the crinkley sound of the wrapping paper was fascinating to hear. Jack reminded me of that scenario since he was more involved in unwrapping than curious about the content. David sent several instructional-type gifts -- coloring books, elementary puzzles, a basketball game that you have to select the number of a square the ball landed upon -- basically good memory skill games. Additionally, David also enrolled us in the AD Association Safe Return Program which not only provided Jack with an identification bracelet with a registration number but also one for me which if used in an emergency situation would alert others that I was a caregiver for an impaired AD person. Our two bracelets were correlated with a registration number registered at the Alzheimer's Association 800 toll free number.
12/26/97 - Supposedly simple tasks that I ask Jack to do sometimes amaze me as to how fragile the brain really is. Yesterday I sat Jack down to do some puzzles that David has given him for Christmas. They were very large pieces, approximately 3" in diameter and probably less than 12-16 pieces to a puzzle. I thought that he would spend some time in thought before completing them, but to the contrary, he had them done in less than 20 minutes. Paul was visiting here at the time and I was pleased that he could see this. When completes one, I praise him and when heís out of sight, I take it apart and put it back in the box. Later, he will pick it up and do it again, unaware that it is not a new puzzle.
Paul came today (Friday after Christmas) to see Jack and I prevailed upon his good nature to put the bookcase together for me that I had bought at WalMart. He had it done in about an hour but would have taken me a whole weekend. Jack worked right along with him although you could tell that some things were beyond him.
12/27/97 - Since Christmas fell on a Thursday, the cleaning of the building was not exactly on schedule. I planned to have Jack help me since he was the "vacuumee" at our previous home and frankly did a better job than I -- he was so thorough. Me -- I zip, zip through the whole job, intending that "next" time I would do a better job. This was not the case now, however. As I wove my way through the halls dusting, cleaning the laundries and trash rooms, I left Jack to push the vacuum. Soon I noticed no "hummmm" noise and went to check on Jack. He was pushing the vac back and forth, but he had not turned it on. This is one of those forever lost anamnesis that amaze me. Certain items that usually require little thinking, but accomplished simply by rote recollection are lost. Incredible. I turned on the vacuum for him and motioned for him to continue, but he was not vacuuming in a "sweep" fashion, but pushing it ahead of him as he walked -- certainly not the thorough job he was used to doing. This was not going to work for me so I took him back to our unit and turned on the TV. Now he is in his "safe" element and will be content. I believe that because vacuuming in this building was not part of his previous normal life, all recollection of vacuuming, per se, was new to him. Jack is beyond the power of reasoning. I would wager that if I put a vacuum in his hand and took him back to 9015 Bay Street N.E., he would do his usual bang-up job, but out of the norm, he is lost.
12/28/97 - Jack is in disposable diapers all the time now. Although his accidents are not every day, itís the safest way and Jack does not object. But today, when I checked him, I noticed that he had bermudas on under his regular chino pants, and also two pair of socks!
1/1/98 - The New Year is here and it is cold out today == 41, no less. The TV has been reporting that the beaches were sadly eroded from last weekís rain and wind. Having nothing to do, I told Jack we would ride to the beaches for a looksee and hunt for shells, which sometime wash those rarely seen shells up on the beach. I asked Jack to look in my pocketbook and get a one dollar bill for the toll. He fished out two pennies. Seven times (that seems to be the norm for a request to Jack for something!) I repeated -- A ONE DOLLAR BILL -- each time unable to come up with the one dollar bill. I think he knows "money" but not the denominations, either coin or paper money. Oh, me! I DO get impatient and sometimes wind up hollering. In this particular instance, I was.....I was nervous because we were in traffic and Iím trying to get my wallet from him which he refuses to relinquish. But Jack remains bewildered about the whole thing as though I were speaking a foreign language. This also happens when I am attempting to undress him when he has an accident. "Pick up your foot" (so I can take off his shoes and pants) is also confusing to him. Simple orders do not seem to get through, although he hears me. What is the solution, I have asked myself so many times, but sadly, there is none other than the redundancy of the same thing, over and over again, until you strike a nerve and get a response. At times when he has something in his hand, I know that he has forgotten what he set out to do, so Iíll say "put that in the wastebasket", knowing that it what he intended. Now -- my request to put it in the wastebasket totally confused him again. Maybe if I hadnít interrupted his train of thought, he may have remembered. But now he has two things to try and sort out. Oh, me!
1/3/98 - I asked Jack to help me with the dishes tonight, not specifically because I needed it, but to allow him to do something purposeful. I believe he does want to help, but is still unsure of what to do or where to put it in this "still-new-to-him" living arrangement in a condo. He did not attempt to help me, but instead turned on all the burners. THIS bothers me.
While we were waiting in line at Winn Dixie grocery store, Jack said he had to go to the bathroom. This is the norm each time we enter a store. Because the restrooms are adjacent to the checkout lines, I was able to keep an eye out for Jack to exit. Or, so I thought. I was distracted for a few minutes while my purchases were being scanned and when he didnít appear, I prevailed upon a gentlemen to check the menís restroom for me. I described Jack and what he was wearing -- a red jacket and a straw hat. A few minutes passed and the man reported that there was no one in the restroom. Nuts! I thought -- now what? I sat down at the entrance so I could make a visual scan throughout the store without missing him, and Lo and Behold! He was in line! Not in the line we had originally entered, but several checkout lines further down. I could see the confusion on the checkerís face as Jack stood before her, smiling, and as I approached, she was saying "do you have groceries, sir?" "Where are your groceries, sir?"
"Are you with this lady, sir?" He answered all questions with "FINE".
1/4/98 - Since I have been sleeping alone the past year, I have gotten in the habit of reading in bed again. When we were first married, we made an agreement that if I didnít read in bed, he wouldnít have the radio going. Since that time -- 25 years ago nearly -- I have not read in bed, but it does give me something else to occupy my mind and I seem to sleep better. As a precaution, I keep a bell on the door knob, just to alert me that Jack is exiting the unit. I am getting ahead of myself -- or is it behind myself? Anyway, I thought I heard the door slam, although since we have been in this condo building, doors are slamming all over the place most of the time anyway and itís difficult to tell just where the slamming is coming from. Just as a precaution, I got up to check on Jack. He was gone from the sofa where he has been sleeping and was no where in the apartment. I raced into the corridor and he was nowhere to be seen. I went back to the apartment and looked out the sliding window and he was in the parking lot. As I went out to retrieve him, I had thoughts of anger and fear mixed together. Since our apartment has an access door to the building before you can enter the individual units, he would not have been able to get in! -- he did not have keys with him obviously. I believe he was only out there a few minutes and I could tell by the expression in his eyes, he was completely disoriented and wondering why he was out there. My heart just breaks when I see him so confused -- it must be a terribly scary feeling to be all alone and not know where you are, and donít know what to do. Similarly, I sometimes feel that way myself without Jackís guidance I had relied on these almost twenty-five years. In many ways, Jack has spoiled me rotten. Now I am fending for myself, and I do not trust my own judgement about decisions regarding Jackís care as well as my own. I had grown so accustomed to depending on him for everything. Every time I hear Celine Dion sing one of her first hits "Because You Loved Me", it brings me to not only tears, but racking sobs. This personifies our relationship and the love we have for each other. Now, although I still have that same love, it is not for the man I now live with -- the person who inhabits Jackís body is not the same one I love and admire. That may sound like a blasphemous statement, but only one who has lived with an AD person would understand that theory.
1/5/98 - Helping Jack shower always brings out the worst in me. When I first realized Jack was unable to bathe himself, I thought showering together as we used to when we were first married would solve everything -- WRONG! When I try to help him, he puts his arms up and tries to fight me off. Not in an attacking mode, but as if he is trying to ward me off, which is because I think he doesnít understand what I am trying to do to him or with him. As I approached him with the facecloth, I would preface my movement by saying "now I am going to wash your arms", etc. Etc., but because he doesnít comprehend, that was of little value.
1/5/98 (continued) So -- I just went ahead and did it and without the dissertation, which ended up with both of us taking a few knocks. With another lesson behind me, I no longer enter the shower stall with him, but stay outside and direct the operation, guiding his hands to where he should be washing. For instance, he would soap his hair, but not rinse it. But todayís shower had a new twist.....when he finished, he grabbed his towel and started to dry off -- while still under the shower and the water still running. Needless to say, we needed a new towel.
Another recent quirk is that he appears to be cold and bundles up. I think this has become a habit rather than noting that he is cold or hot. While sitting in his chair and the room temperature at 78ļ, he will have socks on and a woolen afghan on his lap. I couldn't help but be reminded of seeing nursing home patients who appear to become married to lap robes. Additionally, when Jack goes to bed, he insists on having his flannel pajamas and his socks on. And although he has an acrylic blanket and sheet, he always asks for another afghan. During the night when I check on him, he still is bundled up and doesnít kick off the blankets as though he might be warm. During December, we did have some colder nights and I dragged out his flannels and some blanket. I am wondering if he is holding on to that time period or is it that itís just becoming a realization......sometimes the comprehension is delayed, sometimes as long as two days, but several weeks? Or, is it because he once gets hold of a thought, it stays with him until whenever? I still sound as though I have my Phd.....a wannabe neurologist/psychologist. Itís just that my personal makeup has always been the "show and tell" type. If I know the reason for an action, I feel better equipped to cope with it, or fix it. Although I know that this canít be "fixed", the coping reflex remains.
1/17/98 - I have been remiss in keeping this journal up to date since I have taken a position as a secretary at the Envoy Point condominiums. And although I am still in the throes of a training period, I am certain that I will enjoy it. In my many years as a secretary, I am not tired of keeping records, typing, etc. It fills some insatiable need in me to always have records in order, whether itís mine or someone else. Since I have been unemployed for the past year, it goes without saying that all MY records are as up-to-date as they can be. This position will also fill the void of being with people, although I am the only one in the office. However, condo owners, guest, workman, etc. drop in frequently. So I have the best of both worlds -- I am in control of my own job with no supervisor, and I am around people and have become useful once again. Jackís conversations now have been reduced to one word. He no longer can say "I am going to get the mail".....it comes out "phssst ..wa...wa....mmmmmail" I believe he knows he should try to talk, but itís a trying experience for him. I donít know if I am responsible for this lack since I do encourage him to speak. Frequently, when Jack comes and stares at me, all hunched over and trying so hard to force a word out, I have to say to him, "I donít understand -- you have to talk to me -- I donít know what you want." And,
Iím not even sure that HE understands that phrase. He will continue to stare and eventually turn away. I donít know if he has forgotten what he wanted or he realizes that this is a lesson in futility to get me to understand what he wants. What terrifies me is what I donít know. Does he have a toothache? A stomach ache? Is he hurting? Will I know when he does? All of the small talk between a husband and wife that usually says nothing, such as:
†††† "I am going to the bathroom"
†††† "Look at the way that cat is laying"
†††† "I think Iíll do a wash -- anything to go in?"
†††† "What do you want for supper -- leftovers or shall I order a pizza?"
†††† "Are you feeling OK? You seem quiet."
In our marriage, we hardly had a bowel movement without commenting on it. "Boy, am I LOOSE today."
Speaking of toilet talk, Jackís latest quirk is to spin the toilet paper holder at least twenty times or more to acquire enough toilet paper to satisfy him. While I was using the computer in the next room, I kept hearing the sound ---WHIRRRRR -- and later determined it was the sound of the toilet paper holder spinning! When I investigated, he was neatly folding it, until he had a big wad of it. Now I know why I am suctioning the toilet every day with the plunger. I thought we had a stoppage and about to call my plumber friend, when in fact, it is Jack using too much paper to flush. Although I told Jack not to use so much paper, he forgets, so I am forced to remove the actual paper, and just meter it out in small batches. So far, that has worked. I also found out that when the toilet paper holder would run out, he would not replace the roll, but reach under the vanity and grab a paper towel and use that instead of changing the roll.
As I am getting ready for work, I am also monitoring Jack as he dresses for the Center. He needs to be reminded of everything Ė
∑ Put some deodorant on" (This was weird....I caught him using his electric shaver conditioning under this arms.)
∑ Comb your hair (he was using mouthwash on his hair instead of his Protein 29. Now I know why I am buying at 14 oz. Bottle every week. Forget that!)
∑ Brush your teeth (Once I caught him squeezing out the Ben-Gay!!!! Instead)
Figuratively speaking, these actually are the products he used each and every morning to groom himself. He has forgotten the actual uses for each and the sequence in which he used them. As I have mentioned before, itís me, myself and I that needs retraining.
All of these things, a partner takes for granted that he will do if reminded. But I am learning that telling him to "do it" is not always getting done like it would if he were "with it". We all have so much to learn.
Today I told Jack to put on a different shirt, but I didnít monitor him -- I just told him and went about taking care of getting myself ready.. He tends to wear the same shirt day in and day out unless I physically take it off -- sometimes this, too, presents an even greater problem getting it off him.. He doesnít want to give up "the shirt" to the laundry. I later noticed that because I didnít check him, he put the shirt that I have given him OVER the one he didnít want to give up. Of course, I didnít discover that until I picked him up at the Center later that afternoon. Every day brings something new to learn. I almost feel like I should be composing a manual.
Usually when I leave home in the morning, I will leave the remaining coffee in the pot because sometimes Jack will drink it when we return in the afternoon. What he doesnít seem to be able to reason out is that if the coffee is cold, he can put it in the microwave and get it hot. But when we do that, he will continue to retain that thought and also put the coffee in the microwave the next morning when the coffee is fresh and HOT. I have to be careful that he doesnít burn his mouth -- easy to do when itís been microwaved. I really confuse him on that issue. (Why did she put it in the microwave yesterday and not today?) On the next day, he will usually just pour the coffee, NOT put it in the microwave and drink it cold, as if he were trying to please me by doing the right thing TODAY! Strange.
2/2/98 - An odd happening today. As we were leaving the van, I had the heavier load to carry in to our unit -- mainly, an office chair I had purchased -- so I asked Jack if he would open up the door for me as I usually do that for him. He said his usual, "SURE!". But as we approached the door, he looked expectantly at me, questioning....meaning what? Sometimes I donít know. I repeated "will you open the door?". Again, "SURE! But still didnít attempt a move toward the door. I asked if he had his keys -- "SURE!". With that, he went through the motions (as though he were USING keys) of taking his keys from his pocket, and inserting them in the door, and then motioned as though he were opening the door -- still with no keys. And of course, the door is still not open. I find that bit of role playing really strange. I wonder if because he is unable to articulate the words of "I DONíT HAVE MY KEYS" or "I DONíT KNOW WHERE MY KEYS ARE", is why he went through this charade of opening the door. Did he not know that the door WOULDNíT OPEN? His verbal skills are nearly nil now and I worry. How can he tell me if he has a toothache -- or a stomachache -- or trouble with his bowels, OR ANYTHING, for that matter.
How will I know? In spite of the fact that he will not or cannot talk, nor does he comprehend or understand what I am saying. So, if I suspected that he was in pain, he would probably say "FINE"! Or "SURE", but I still would not know for certain.
2/3/98 - Returning home from work and the Center laden down with grocery bags, I murmurred to myself "oh, thatís right....you donít have keys". During one of his rare moments of comprehension when he grasps the meaning of a phrase, he reached into his pocket, withdrew an imaginery set of keys and tried "them" in the door. As he did this, my first thought was that perhaps he had found his keys at the Center. Wrong! He was just going through the motions again, as though the door would open magically. Throughout this charade, he uttered not a word, but looked at me pathetically, wondering why the door wouldnít open. He appeared relieved when I opened the door. Did he think because HE had no keys, I didnít either, or that there was no way to open the door? Jack becomes fretful and anxious when things happen that is not in the ordinary course of events. For instance, today I had to go to the IRS Building at the Koger Center to pick up some #8840 forms for the office. Because it was NOT in our usual plan, he was a little nervous. Unfortunately, when I looked at the forms after I had picked them up, I noticed that they were 1996, not 1997, so it required a return trip back. Again, he was a mite anxious. I wondered if he remembered that I worked in this building from 1982 to 1989, and if that fact had any connotations to his behavior. I also wonder if during this anxious times if he thinks that I am going to leave him somewhere. Curiouser and curiouser........
2/10/98 - Every day brings another slippage that never ceases to amaze me. In an effort to maintain my sanity, my motto has become -- "donít sweat the small stuff", for if you did, there would never be a momentís peace of mind. However, SOMETIMES, the "small stuff" is the irritation that sends me to the bottoms of despair, and I hate myself when it gets the better of me and I lose my cool and sense of purpose. In a sense, itís like the one grain of sand within an oyster. Donít further equivocate and mention "AND IT TURNS INTO A PEARL", because that isnít exactly what happens in this case. I am referring to the irritation only. For some time now, Jack seems to do things in excesses, i.e., rather than "filling" the catís dish, he will empty the whole bag into the dish, rather than filling the dish to capacity, he will empty the box or bag from which he is pouring. Similarly, when he has something to drink, he will have a Coke, a cup of coffee, and a sports mug of ice water, simultaneously on his end table. As yet, I have considered this "small stuff". Who cares? However, he now wishes to sate me with the same -- except that he doesnít give me one glass of Coke, but four! Needless to say, my hoard of having two liters of Coke in the larder is usually depleted. At first, I told Jack I only wanted one at a time -- but his capacity to understand is diminished to a point that he would throw it down the sink, rather than replacing it in the bottle for future use.
His comprehension of simple orders "take off your shirt", "bend over", "take off your shoes" is at such an all time low that changing the diaper now is a major chore. He does not, however, appear to mind the changing, but only that he does not understand.. In fact, sometimes when he is soiled, he will come to me for changing. But the general physical acts, such as undressing and the cleaning of the soiled areas of his body that must precede the actual changing, is what he does not understand. A third party witnessing this would immediately assume that he does not HEAR. But I donít think that is the case. I must give him the command at least four times before it makes a connection. Sadly, sometimes on the fourth or even fifth time, I am raising my voice somewhat. I have developed an ingrained habit to count to ten -- then repeat -- count to ten -- repeat a second time, etc. Jack sometimes stares at me as though he really cannot understand or as though I am speaking in a foreign tongue.
Throughout these past two years, however, I must commend Jack for his adjustment to this whacky disease. He has unlimitless patience (unlike myself) with the ever changing patterns of his life. I KNOW that to some degree he senses that his life is different and that he is not the same man. I can say that with maximal confidence because I see it in his eyes, which most times bear a vacant unseeing stare, and in his facial expressions. When he is in a confused state, he squishes up his brow in a questioning expression -- as though he swallowed something mammoth -- and looks to me for answers. Since he cannot formulate sentences or even string a few words together, he communicates with me through looks and expressions. On occasion, I will know what he wants -- but sadly, many times, I do not.
I can tell in his eyes he still knows that we are lovers. Heíll reach over and pat my shoulder wanting to say, "hi, darling", like he always has done. The only thing missing is the accompanying words.
I am certain that if this were my experience, Iíd be screaming like a banshee if I didnít understand what is happening to me. Jack has unlimited courage and has always adapted to the hand dealt him with grace and dignity, even though I have seen him in a few humiliating circumstances. This must be his greatest, most formidable feat to be able to still be sweet, kind and think not of himself, but others. This fortitude has helped him, Iím sure, to adapt to this strange new world he now lives in alone.
When we are with other people in crowds -- i.e., supermarkets, malls -- he has developed a habit of putting his arm around the person closest to him and gently rubbing the back. Although this is rather unsettling to the recipient, I think Jackís smile and expression says his intent is only to be friendly and meaning no harm. To most, this is sufficient, although at first there is an expression of shock at this stranger rubbing their back and the next thought Iím sure is "do I know this person?" Not withstanding any forthcoming explanation, the thought is fleeting, since the backrub feels pretty good! If it is evident that the person is offended, I generally step in and quietly say -- "heís impaired, but he means no harm". I have only experienced one person who took offense and I rose to the occasion like a wounded bear with "lighten up, sister -- heís impaired -- donít get your panties in a knot!" (or something like that!)
2/18/98 - Today I noticed Jack pull a wallet from his pants pocket that clearly was not his. When I questioned him about it, he was unable to articulate but did hand it to me. I placed it in my purse for further study when I was alone. As I examined it, I wondered if perhaps someone at the Center had laid it down for a moment. On occasion, I noticed Jack picking up stuff in the stores and putting it in his pockets and without making an issue of it, I took it from him and placed it in our cart. Jack seemed unconcerned and went along with it. I called the Center and inquired if that had a person attending the Center with the name I found in the wallet, and it was confirmed. I told her I had it and would return it that afternoon.
3/18/98 - Most recently and at a steady decline, Jackís comprehension and reasoning is less and less. The shower is a combative event but I have just figured out that itís because he seems to have developed a fear of the water. I have to admit, however, that it is not constant, but surfaces spasmodically. I have mentioned in this text before that "lift your leg" and simple commands to wash a body must be repeated time and time again before it registers. I start off by saying the Hail Mary twice, praying for the patience I will need to give Jack his shower. Each time, I get better so the prayers are working. When I find myself beginning to become impatient, another Hail Mary ensues -- generally, itís what does the trick. Once in the shower, I use a back brush with my sweet smelling Clairol Herbal body wash on his back and he gets the message of what he is there for -- wash!. I use the body wash because he forgets what the soap is for. He will wet the facecloth, but even when reminded to soap it, he doesnít want to do that, or has forgotten the purpose of the soap. Thatís where the Clairol lather comes in -- that stuff is so foamy, itís hard to rinse out. Thank you, Clairol. Perhaps I had better write to Clairol about this new use. I could just cry for his fear and much of the time I do just that. What the hell -- by now, Iím wet up to my eyeballs anyway - whatís a little more water?
Speaking of crying...... I really have to be careful of my tears -- which are more and more frequent. I guess itís an emotional outlet for me and if I didnít have this release, I would keep it all inside. Each day when I drop Jack off at the Center and get on to U. S. 19, itís my cue to start the big bawl as I start the drive to my office. After I get it out of my system, then I am ready to start my day with a different outlook, i.e., my job at Envoy. However, when some new quirk develops in Jackís behavior, I see it as another thing lost forever, and it tears me up and I start the waterworks again. If Jack sees me with tears in my eyes, heíll cry, too! Is this really an empathy thing, or is he crying because he knows that things are not quite kosher with him and with "us"? I wonder.......sometimes his understanding of some things is uncanny.
In the past month, I have been plagued with the invasion of German roaches -- by the gazillions! My kitchen has been invaded and I have also noticed them in the bath. Needless to say, living with bugs has not been a habit with us for the past 25 years and I donít intend to co-habitat now. I have been sprayed by Brosan & Sons -- Penn is my entomologist -- and he has given me an education. At my last treatment Penn warned me that we may still see some and to kill them any way we can, but I noticed that when Jack sees one, he will kill it but put it in his pocket, rather than disposing of it. I usually hold out my hand for it, but he doesnít want to give it up. I have to write a note to myself that when he gets his pjís on, I can remove it my his pants pocket! SOMETIMES I FORGET!
Some of the things I have noticed recently are:
∑ can no longer prepare his coffee per his usual taste. He will pour a small amount of coffee in the cup (usually only a few teaspoonfuls) and fill it up with milk. If the coffee pot is still on and it is hot - he will place it in the microwave. If the coffee pot is NOT on, he will drink it cold. He doesnít seem to be able to differentiate between hot and cold
∑ After cleaning up after supper, I usually ask Jack to empty the wastebasket which entails closing and tying the plastic bag. He seems to have lost the knack of tying the bag and some of it spills out onto the floor, but he will not attempt to pick it up. If I donít monitor him, he will take the whole wastebasket to the trash room, take the trash from the plastic liner bag (leaving the liner in) and put piece by piece into the trash chute (this is a real no-no, since all rubbish must be wrapped and enclosed before putting it in the chute). My former Jack would have been very particular about a chore such as this, since he deplored sloppiness and anything less than perfect.
∑ On occasion when I am attempting to explain something to Jack and I am unsure if he comprehends, I will say -- "do you understand?". His reply will be "STAND" , as though aping the last syllable. My guess to this is that he thinks that I want him to repeat what I said ....I think....... Again, I seem to have a need to find a reason for his odd behavior and responses. Still striving for "reasons". Odd, I know, but I guess some of us still hang onto a thread of acceptance. However, in defense of myself, finding "reasons" also aid us in understanding the needs of AD victims. Occasionally when Jack is attempting to tell me something and the words just donít come for him, sometimes a pattern of behavioral, if recognized as such, may offer an explanation for that moment that he cannot communicate.
4/5/98 - Bad Day at Black Rock: Jack awakened late this morning -- at least late for him. Today was the time change when we set our clocks ahead. Even so, it still was late for him in spite of the time alteration. I urged him to get his coffee as I got myself together and while I prepared breakfast. Instead he headed for the closet. Again, get your coffee, Jack. This time, he went to the bedroom. Time No. 3 -- do you want your coffee, Jack? This time he took off his shoes. Clearly, he was foggy today and one of his "bad" days. I prepared his coffee for him.
One of the things Iíve noticed is that Jackís nose drips frequently, but only recently did I note that it is most frequent during eating. I wonder why that is. Initially, I thought that nasal passages were blocked or not functioning well, but during mealtimes??? Does the memory banks say "only drip during ingestation"?
Also while eating, Jack tends to stuff his mouth full of food, rather than waiting until he has swallowed or chewed sufficiently what he already has in his mouth, therefore, he has a tendency to gag or sometimes retch when he realizes he has too much in his mouth. Now I know why AD patients must be hand fed occasionally. However, when I try, he resists.
Oh, boy.....the hearing aid caper. Occasionally Jack will remove his hearing aids. Although I donít actually see him do it, he tampers with the mold and the wire, sometimes dislodging the works. I usually can rectify it by putting it back together, but today when he fooled with it, I canít seem to get it properly fitted, so obviously I have it put together incorrectly. I guess this will mean a visit to Dr. Barry Robbins at Suncoast Clinic. This will be a heavy charge, too, since the hearing aids are out of warranty and his visits are not covered by Jackís Medicare supplement.
4/6/98 - A mystery of lost socks emerges every once in a while. Although I supervise Jackís attire, I donít actually stand beside him and monitor every piece of clothing he puts on. I give him the once-over -- Yes, he has his hearing aids in -- I pat his backside to check for the identification and wallet -- I feel his pocket checking for his house keys -- I give his rear a check and feel for the jockey shorts and the diaper underneath -- and satisfied, weíll usually set to go ...wherever. However, Jack apparently has a sneaky side. I donít always check his socks! Once in a while sitting in the living room flanking him, I will notice that he only has one sock on. Without calling attention to it, I mentally check the rooms, drawers, and laundry hamper looking for the other.....I NEVER can find one sock. I donít know if he only puts on ONE sock, or he starts out with TWO and somehow during the day, discards one. To my knowledge, there are always pairs in his drawers and naturally, I would notice this in the laundry. This IS a puzzle.
This type of behavior has also recently surfaced with his jockey shorts. When I notice him on the toilet, there are no jockey shorts below his knees with his pants -- and worse yet -- NO DIAPER. I can suppose that he has messed himself and removed the diaper which is understandable == although just lately, he has begun telling me in various ways that he needs to be changed -- and somehow he gets rid of the diaper -- but HOW -- and where are the jockey shorts? The only explanation is that he throws them down the trash chute next to our unit. Usually I am aware if and when he leaves the apartment, since I have a bell on the doorknob, but I am slipping up somewhere. I donít think I am naive in that respect -- this is a SMALL apartment, but something is amiss in my awareness. My only "alone" time is when I use the toilet -- do you suppose?
By using too much toilet paper, toilets overflow....Today, big time. Shit and pee covered 1" of the floor. Although I was aware that his toilet paper consumption was too much, too soon, I began buying the cheapest one-ply for that bathroom alone; however, "cheap" stuff is not always effective (in more ways than one) as we all know, but I thought Iíd give it a whirl. I would guess that because he didnít have a good two-ply, he used more; hence the clog. This is the fourth time that has happened -- only THIS TIME, the contents of the bowl were bigger and stinkier! One must develop a sixth sense of outsmarting -- in order to find ways to avoid these pitfalls. So-o-o-o-o, I guess I will have to start doling out the toilet paper -- a sheet or two at a time. Thankfully, in this condo situation, I am on the first floor. If I were not, I doubt that any resident living under me would tolerate more than one overflow!
4/20/98 - Lately Jack seems to shovel his food in his mouth without allowing himself time enough to chew and swallow. Whatever is on the plate, goes in. I have to watch him carefully about this so that he doesnít choke or vomit.....both of which have happened. Every move, every gesture -- you have to be on guard constantly. Who would think that someone could choke sitting right next to you? We have the TV on as we eat, and naturally, my eyes are on IT. Nevermore, however. I will have to ask the nurse if she has noticed this latest development and if he requires help with his meals while at the Center. I certainly hate the thought of having to feed him -- not that I mind -- but only that this another chunk of his independence that I will be taking away from him. THAT really is what hurts me. I cry when I think of it. (But then, I cry all the time about everything!) Every day when I hit U. S. 19, the waterworks start. I still canít get used to leaving him in the care of someone else.
I noticed that he can no longer find the ON button for the TV. When we moved here, I took over the remote for the TV, simply because he had a tendency to change the channel in the middle of a program. He has no comprehension of what he is watching even though I comb the TV guide for something that might have some appeal to him-- boating, racing, etc. But I donít think there is. But when I ask him to turn the TV on, he just punches and punches, hoping to find that magic one that will turn the TV on. When I pointed out to him that the ON button is red, it doesnít register with him at all.
4/19/98 - Tonight I counted how many times he asked to go to bed -- which is simply standing by me and muttering sounds which eventually turn into the word "bbbbeed". When I say -- itís too early, hon -- wait a while", heíll sit down in his chair, but in less than a minute, heís up again asking again. I believe he forgets that he has asked. In the course of 20 minutes, he got up and asked 14 times. Naturally, depending upon the patience I have stored up, I usually say the same thing over and over again. Hopefully, this will work until at least 8:30 or later if I can manage it, before I finally say, "OK, you can go to bed". He will usually sleep until about 6:30 when I awaken. We seem to have reversed roles. He used to be the one to be up at 5 - 5:30 a.m. and then would awaken me at 6:00 a.m. to get ready for work. I believe he gets about 14-16 hours of sleep each day. Iím told by the attendants at the Center that he is always in a lounge chair sleeping one or two hours at a time. Because of his limited attention span, he does not participate in any of the activities that require any thought process -- puzzles, crafts, cards or even television. His contentment is to sit and sleep.
4/26/98 - Referring back to the last paragraph, today JACK SLEPT UNTIL 9:30 A.M. -- I HAD TO WAKE HIM UP! This is a first in the nearly 25 years of our being together -- sleeping, that is. Yesterday was a bad day for Jack. While we were in the laundry room -- which is very small, even for two people -- I backed up against him causing him to hit his face on the shelf where laundry materials are stored. He got a read bad bump across the bridge of his nose and bled a lot. He did it not once, but twice. As he was recovering from the first bump, he turned around to help me place stuff in the dryer and did it again. He is of the equal height with the shelf and he didnít duck, and he hit it hard again. I guess those of us who are used to being in that cramped room have mentally adjusted to it, or just arenít that tall that we would collide with it. In addition, while showering him, I raked him with my nails again so he will have some scratch marks on his face. His skin is so paper thin that the slightest abrasion turned into a major bleeding. Dr. Cohen gave me a prescription for a mild sedative for those times -- like showering -- when he becomes combative, but it didnít seem to settle him down much. Today he does seem a little spacey which may account for his disorientation up in the laundry. I did give Jack one Tylenol PM tonight instead of the two I had been giving him. This was Diane Fixís suggestion, although she said the dosage of two wonít hurt since it is only benedryl. Since Jack has always been somewhat of a pill freak, I hesitate to administer anything. However, I give Jack the Tylenol so that he will at least sleep through the night , since he does sleep so much at the Center. Come to think of it, he didnít sleep too much yesterday which may account for the late awakening today. I didnít think of that until just this minute.
As we got into the van today, I reminded Jack to buckle up (as I always have to do) -- BUT he was trying to buckle up the seat belt to the THREE belts he had on. I donít know why I did not notice that he had on 3 belts! All of this is an education in awareness -- every day itís something else you have to check on.
MAY 27, 1998 - AUGUST 31 1998
5/27/98 - Mealtimes are beginning to be an exhausting and aggravating event. This used to be one of our favorite times. I have always been a good cook -- an innovative one, too -- and Jack has been a very appreciative audience for new recipes, in spite of my experimentation that always turn out the way I hoped. He never knew what was for supper, although I kept no secrets about the ingredients. I would venture a guess that 95% of my surprises were welcomed. I soon realized early on that the taboo items in Jackís diet were vinegar, nuts and lima beans. Small sacrifice, even though they count among my favorites. I digress.......
Now mealtimes are a hassle for me and Jack. Iím sure Jack does not appreciate my horning in on the way he eats his foods. However, he is pretty much laid back and shows no emotion, even though I occasionally become impatient with him. Although my impatience is not verbal, I am sure that Jack can still read my face like a book. Jack will chew and chew, and chew and on and on, until he has a wad of mush in his cheeks that he can no longer chew, let alone swallow. Tonight was especially trying. I moved his plate from in front of him, until he finished with the amount in his mouth, but that didnít help tonight. He would just spit it out on the table. I then would cut it up real small and feed him. Again, heíd reduce it to a wad and spit it out. He actually ate less than half of his supper, which tonight, was simply French toast and sausage, with cheesecake/pudding for dessert. I actually thought that a "breakfast supper" would be easier to digest, since of late, he has been having difficulty chewing and digesting his food, however bland and of a soft consistency. This latest habit surfaced about three (3) weeks ago and has become steadily worse day by day. When I asked the Center if he has this same habit there during his noon meal, the aide simply said "sometimes he needs a little help". I did not press further, since she was in the middle of boarding people on the busses. I should have stayed and asked for more information to find out if this was MY problem, or it is a new twist on AD. I feared at first that he may have a problem swallowing -- maybe an esophagus problem, which is prevalent in many people as they age, but I donít believe that is the case here.
6/12/98 - I have started an "eating diary" in order to keep track of what he eats, what he spits out to determine if itís the food, the consistency of same, or simply another facet of this dread disease. Like I have mentioned before, every day has a new twist to it that taxes my pea brain.
6/15/98 -- An odd thing (but funny and scary at the same time) occurred today. I guess I did not give Jack the usual once-over, as I generally do just before we leave for work/Center. As he opened the van door, his pants fell to the ground!!!!! There he was, clad in his jockey shorts (diaper visable, too!) for all to see. Unfortunately, there happened to be a city bus headed south just at this very moment. Whoa! I pulled up his pants -- he had neither buttoned his pants, nor zippered and although he had threaded his belt in the loops, it, too, was not buckled. Frankly, I donít know HOW the pants stayed up during the short trip from the apartment to getting in the van. The pants are, however, now too big for him and the only thing holding them up would have been the belt, had it been secured along with the buttons and zippered. I guess we canít wear these again. Some things just sneak up on you without warning and although he has lost weight again (162 at last weigh-in a week ago) I should be more aware of clothes not fitting properly.
I have noticed that he no longer falls asleep when we come home from work as he used to. He does start around 4:30 p.m. asking to go to bed, over and over again, forgetting that he has already asked. I just say "letís have supper first" and he will sit down. Now itís anytime after 7 p.m. that I let him hit the sheets. I give him a Tylenol PM so he will sleep through the night. Diane Fix suggested that I give him one only -- I was giving him two.
During mealtime, Jackís nose runs -- and he develops a sneezing fit, sneezing more than four (4) times. I must remember to ask Dr. Cohen about this.
6/20/98 -- Jackís latest habit of spitting out his foods pretty much precludes us of ever hitting a fast food joint. Occasionally, a break in the routine not only for me but for Jack as well, would be a treat. However, the general public is not a kindly bunch, criticizing those who are impaired, so I hesitate to venture out where Jack would be subject to that sort of scrutiny and criticism, albeit rude and erroneously judgmental..
Today I felt very soliticious and called Margaret up and asked to visit. She invited us to lunch and made chicken salad sandwiches. I alerted of Jackís latest habit, and as luck would have it, Jack did not reject his foods. Needless to say, Margaret swelled with pride and got in a malicious barb that Jack does not do "those things" at her house. Although I was glad that he did NOT, it does cast some doubt on my nursing skills. When Jack and I were courting, we use to joke about my being a lousy nurse. My favorite comment was that he could get sick or a day or two, but if it continued any further, he would have to check into a nursing home. Ironic how a joke can come back to haunt you........During our marriage, Jack has had more than his share of illnesses, i.e., first year he had a nervous breakdown and sun stroke. In later years, he was plagued with alcoholism during which he had a blackout and leaped from the Howard Franklin bridge, a bleeding ulcer, several arthroscopic surgeries and finally a knee replacement, polymyalgia rheumattica, but somehow they never seemed like illnesses to me and I never felt like a nurse -- probably because Jack was always very self sufficient and an ideal patient. I never had to remind
Jack "to do what the doctor ordered".
6/21/98 - Today is Fatherís Day -- it was also probably THE MOST trying day I have experienced. He began at 3:30 p.m., eager to get to bed. On three occasions, he was already in the bed -- nude -- having taken off his clothes. Although it would have been easier to leave him in bed, I knew that he had to shower and have supper first. Moreover, if I let him retire early, Iím certain that he would be up, refreshed, at 11 pm.
Showering Jack was and is always a disaster. Although sometimes I forget to give Jack the prescribed tranquilizer, I did remember to administer it today. Instead of calming him, as it is supposed to do, it seemed to increase hyperactivity. Sometimes he appears to be frightened or confused, but today was rebellion in capital letters. In the process he sustained several scratches from my fingernails. His skin is so thin that at the slightest touch, he will bleed. Jack decided to sit in the shower, so I let him sit and I sponged him. As I manipulated holding up his arms, he turned the water off several times and then would turn it on full force. Subsequently, I was drenched. At the very least, it is difficult to handle a wet 160 pounder when he continually resists. He is not combative, but resistant, and refuses to comply to simple commands "turn around", "lift your leg", etc. Etc. After the shower, he placed himself on the tile floor and would not get up to be dried. On several occasions, he would try to get up, but he seemed stumped as to how to do that. When I tried to guide him up, he became resistant again. After a while, it began as a chase - Jack on his rump bumping along, sometimes on his knees, trying to get away.
6/23/98 - We met with Dr. Cohen at 3:30 today. Dr. Cohen checked Jack for any blockage in his esophagus and confirmed that there was none. He stated that at this advanced stage of AD, there is little interest in eating -- that no hunger occurs since the brain has lost that sensation. Additionally, the swallowing problem is simply that he forgets to swallow. He suggested that soups and finger foods would probably be easier to administer.
6/24/98 - Dr. Cohen as usual was correct. Soups are hard to spit out. The next few weeks will be an experience in dining to find those foods that Jack will consume. Today I learned that grapes will substitute for that 25 year old banana habit. One of the problems in the morning is time.......Although I donít leave the house until 8:40 a.m., Jack takes about 1Ĺ hours or more to get through whatever breakfast I have prepared, so I have to start early. I find myself between a rock and a hard place trying to allow sufficient time for breakfast and being "Johnny on the spot" (a pun!) for his bowel movement (which presently get deposited in the diaper directly after his breakfast), and cleaning him up after the breakfast -- and in that order. Then comes the dressing part. I select his outfit and leave it on his bed along with his wallet, ID, glasses and hanky. If I am getting myself ready and donít supervise him, he will don his outfit directly over his pajamas, or worse yet, put on two or three shirts -- sometimes the shoes go on with no socks, or one sock and one shoe, etc. I constantly remember the advice that Diane Fix gave me, i.e., "donít sweat the small stuff". I can relate to that, but the statement itself does make you take stock of yourself, especially when it comes to the dressing part. So WHAT if he puts on 2 shirts? Who cares? If it happens to be a day at home, I donít sweat it. But if he is going to the Center, it does matter (unfortunately, the general public who ARE of sound minds, will judge YOU, i.e., "SHE doesnít take care of him!!!" , and Iím such an orthodox sap....). If he gets more than one shirt on, getting it off is the tough part. He wonít budge! He will NOT take it off, OR he doesnít understand WHY he has to take it off, so the battle to remove ensues. I have to approach him v-e-r-y gently, or he spooks and becomes resistant -- just like the shower episodes. The tough scenario is when he tries to get his pants on without removing his shoes. Usually he puts his shoes on the minute his feet hit the floor in the morning. Inasmuch that he has a problem dressing, I hid his shoes one time the night before so he wouldnít put them on, but that is ONE thing that he does remember and he went into a hissy fit looking for his shoes. Apparently that is paramount to him for some reason.
7/3/98 - Today is our 25th anniversary.
8/6/98 - I received a call from Rhonda Smith, the Admissions Director at Rosedale, telling me she had a "male opening" and could I bring Jack in tomorrow? This really hit me like a ton of bricks. My first reaction was to say "no, thanks", but I said I was not prepared for such a quick transition. Miss Smith perhaps sensed my hesitation and asked if I could have him ready for Friday since she could only hold the opening for 24 hours before offering it to anyone person on the waiting list. Of course, I said "yes", and immediately went into, what seemed to me like a cardiac arrest. My emotions were running at an all time high and then low, euphorically.
8/7/98 - Vacillation. One hour, itís "heís not that bad -- Iíll call and cancel", and the next hours, I knew I was not doing the right thing by Jack. Basically, I could not face the final separation.
8/8/98 - The Day! Lots of tears. I could not let Jack see me crying, because I knew he would cry, too. I went through this when I entered him in adult day care and I cried on that day, too. I was not smart enough to hide it from Jack, and he started crying, without knowing why. We have been so close all these years that what hurts one person in this unit, also hurts the other.
8/9/98 - I sat at home all day long today, unable to face going to Rosedale to see Jack.
8/8/98 - I forced myself to go to see Jack and found him with 2 days growth on his chin and he had soiled himself and he had no diaper on.
8/10/98 - I find myself nearing Rosedale Manor and looking for ways to avoid going. I know a lot of it is a lot of unfounded guilt and I also know I shouldnít feel this way. What is it? But I am doing Jackís laundry rather than have Rosedale do it. Itís a little game I play with myself. If I have to provide clean clothes for Jack, I will naturally go every day or at least every other day. Jackís hamper usually contains clean clothes that he used to put layers and layers of clothes on. When a nurse tells him to remove the layers of clothing, he stuffs them in the hamper so they have to be either ironed or re-cleaned or washed again. (Donít sweat the small stuff !!!!)
8/11/98 - I received a call from Gail at Rosedale who identified herself as a dietician. She was looking for solutions to get some food into Jack. I told her of my experiences with soup and yogurt and that Dr. Cohen had checked him for any physical abnormalities. Finding none, Dr. Cohen concluded that Jack forgets to swallow and lacks any interest in eating. Gail committed herself to try and find food solutions for Jack.
8/13/98 - I went and bought Jack several more pairs of pants and a pair of suspenders. I spoke with a male nurse (Bruce) and said last night Jack had eaten 100% of his food. Additionally, he is being fed an Ensure-like food supplement, which he drinks in front of him until Jack finishes it. I was told on a later date that it was a honey/water concoction mainly used to lubricate the throat/esophagus in an attempt to make the food slide quickly.
Jack was shaved today and he looked good, although I am convinced that he does not know me any longer. He had someone elseís trousers on and 3 of his were missing. When I asked the nurse, he offered no solutions. I must keep foremost in my thoughts the phrase that Diane said to me -- "donít sweat the small stuff", and of course, this IS small stuff. I must realize that no one is going to care for Jack the way I did. Acceptance is my biggest fault and I must "accept" that fact.
8/31/98 - In an effort to try and help regain some of his weight and instill some solid eating habits, Jaime , a speech therapist at Rosedale Manor, called to tell me she had made an appointment at Bayfront Hospital with a radiologist to determine the exact cause of Jackís inability to swallow. She suspects that he is aspirating his food. I had to ask exactly what that means, since I had no clue what "aspirate" meant in medical terminology. She explained that he sucks the food in before he swallows and the food is traveling through his air passages and winds up in his lungs. She further explained that when he eats, his nose runs and his eyes water and sometimes he has a cough, but mostly only during the practice of eating. I had noticed this also at home but really felt it had become a bothersome annoying habit, rather than a physical abnormality and Dr. Cohen confirmed this. This will eventually result in pneumonia on a steady basis and will become a continual problem. When I asked if there were a surgical procedure to correct this, she said NO, but that perhaps an alternative method of feeding be adopted. This means a feeding tube. At the hospital, Tina in Radiology confirmed this diagnosis and showed me a video of the test she had conducted with Jack, actually showing the different kinds and consistencies of foods she fed him. Each time the foods and liquids collected in the air passages, without being ingested. I am so grateful that Jack had written his Living Will that specified "no feeding tube or artificial means". He has given me the greatest gift by taking this responsibility from me -- he had made this decision himself in 1991 when he produced his Living Will and instructed me to type it for him. I was so impressed with his eloquence in preparing this, I adopted it for my own.
My Dad passed away in December of 1998. At some time in the future we will continue this story to his final day, as there other observations and events that would interest other Alzheimer's Caregivers and family.
David B. McElroy