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Consult with Kate’s Doctor

Yesterday, for the first time, I had an appointment with Kate’s doctor without Kate. It was a direct result of Kate’s recent desire to remain in bed rather than get up for lunch. Coincidentally, yesterday was one of those days. This was the fourth or fifth time in the past two weeks. Like all but the first time, she was relaxed and smiling. She seemed to be in a good humor. She just wanted to stay in bed. That’s what she did. I wasn’t able to get her up until after the sitter left just before 5:00 p.m., and she didn’t want to get up then but agreed after my coaxing. She had been in bed over twenty-one hours except for a brief bathroom break around 8:00 a.m. We did get out for dinner, but she went to bed before 7:30 and went to sleep quickly.

I interpreted the first incident as a case of depression. The others didn’t seem anything like that. She was just tired. On the days when she was willing to get up (ten out of fourteen), she was very tired, unsteady on her feet, and felt very insecure. These signs made me think that it was a part of the natural progression of her Alzheimer’s. When her doctor offered to see me, I was happy to accept.

It was a good visit and reminded me of why we have valued this geriatric practice for over twenty years. It is a partnership between our medical school and our largest hospital system. My mom and dad were the first of our family to go there in 1998. Since then, Kate’s mother, Kate, and my dad’s lady friend have all had physicians in the practice. We have always been pleased. There is virtually no wait time. In addition, the doctors spend a great deal of time with the patient and the patient’s family. They are especially good with dementia patients because the doctors always recognize them as the patient. In a situation like this it would be easy for a doctor to look at and speak directly to the family.

I was only there thirty minutes, but I achieved what I needed. I had sent a note of several pages describing Kate’s symptoms over the past few weeks. She had a variety of follow-up questions. I gave her my thoughts about the likelihood that Kate’s changes were just part of the natural progression of the disease. She agreed and handed me a piece of paper with a set of symptoms characteristic of the various stages of Alzheimer’s. They were expressed more specifically than what I had seen before. We focused on those for Stage 7.

7a. Ability to speak is limited to approximately a half-dozen intelligible different words or fewer in an average day.

7b. Speech ability is limited to the use of a single intelligible word in an average day.

7c. Ambulatory ability is lost (cannot walk without assistance).

7d. Cannot sit up without assistance.

7e. Loss of ability to smile.

7f. Loss of ability to hold head up independently.

Clearly, Kate doesn’t hasn’t reached any of these stages. She is losing her ability to talk as well as her ambulatory ability. Her doctor told me that Medicare eligibility for hospice begins around 7c above. I found that sobering. My impression from personal experiences is that the mention of hospice often catches caregivers off guard. It did when my mom’s doctor suggested it was time. She died a few months later. The same was true with my dad’s lady friend. She died less than a week after the doctor recommended hospice.

I don’t mean to suggest that Kate is that near the end of her life. My mom and Dad’s lady friend were much further into their disease than Kate is now. On the other hand, it is a sign that we are much closer to the end than I have sensed. This makes me think about something that I have mentioned before. I hope that Kate does not linger for long. She and I have shared the desire to die quickly. I don’t think we are unusual in that regard. I would love for her to be spared an extended period of time when she is completely bedridden or resting in a wheelchair.

Over the past few months, Kate has occasionally worried about, or at least been puzzled by, what is happening to her – why she can’t remember important things like her name or mine, being married, having children, or being able to remember how to do so many of the activities dialing of living. I wish she weren’t so self-aware. That is painful for both of us.

Ultimately, what I am concerned about is not within my control. All I can do is make her as comfortable as I can and provide her with as much pleasure as I can. It is almost 10:00 a.m. as I close this post. She is still sleeping. I really hope we will be able to get out today, but that’s another thing I may not be able to control.

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Our First UTI Test

Two days ago, I called Kate’s doctor. I wanted to get her thoughts on Kate’s recent changes. I received a quick callback from the doctor’s nurse who said that we ought to test for a urinary tract infection. I am no expert on this subject but told her that it didn’t seem as though she had a UTI. Out of the past fourteen days Kate has had problems on only four days. The inconsistency made me think it might simply be a function of her Alzheimer’s. In addition, her delusions, although they might have been somewhat more frequent, were pretty much in line with the past. She made a point that I can easily understand. She said that symptoms can vary from one person to another. This is one of my mantras. I agreed to take them a urine sample that afternoon.

First thing yesterday morning, I received another call from the nurse informing me that the test was negative, so we can rule out the UTI. She also said the doctor had some time at 2:00 on Friday and would be happy to see Kate and me or just me if I would prefer. That’s a day for the sitter, and I would really like to have a conversation with the doctor without Kate’s presence. I’ll see her then. In the meantime, I think I will write a brief summary using this blog as a source and send it to her via our online portal. I have been using that for years to provide updates before each of Kate’s appointments. I don’t know how helpful that is, but I feel more comfortable that I will give her a better description of our situation in written form than I might do in a face-to-face conversation.

Yesterday went pretty well. Kate was still tired and didn’t want to get up in the morning. She was in a good mood. It took about thirty minutes, but I was successful in getting her up to join me for lunch. As she has done on a number of other occasions, she wanted to lie down again right after using the toilet and washing up. I reminded her that we were going to lunch. I started to help her dress when she wanted to lie down again. I didn’t stop her. We continued to talk for a few minutes before I mentioned that we would need to get ready for lunch. She got up willingly, and we were off.

She was uneasy on her feet walking through the house, down the steps to the garage, and from the car to the restaurant and back. I started investigating walkers yesterday although her inability to follow directions or to learn new things could be a handicap. That’s not to mention the fact that it has to be a walker suitable for someone who is unstable. I have serious doubts that she would be able to use one. This may seem strange to those who haven’t had much experience with someone with Alzheimer’s, but I am finding explanations for almost anything are challenging or impossible for her to grasp. For example, Kate is losing the ability to do simple things like using the toilet, brushing her teeth, where to put her napkin at a restaurant and many other things. She is very dependent on me for help with everything. There is no way I would trust her with a walker unless I were right with her every step of the way.

As usual, she rested immediately after returning from lunch. She was in her recliner when the sitter arrived. When I returned four hours later, she hadn’t moved. Fifteen minutes later, we went to dinner. She went to bed soon after we got home. She was tired and went to sleep. My own interpretation of her being so tired is that it is normal for late stage Alzheimer’s and not something for which we are going to find a solution. I am eager to talk with her doctor tomorrow.

The rest may have caught up with her because she was awake at 5:15 this morning. Her mind was blank. I heard her say, “Who are you?” I gave her my name and told her I was someone who could help her. This began a thirty-minute conversation that went back and forth with her asking the same questions and my giving the same answers. (Who are you? What do you do? Where am I? Do other people live here?) When I told her we were in our house, she wanted to know how we paid for it. That led to how we got money to live. It was particularly confusing for her when I told her we were both retired. The toughest question to answer was “Why don’t I remember any of this?” I told her she sometimes wakes up and doesn’t know anything. Then she goes back to sleep and is all right when she wakes up. Shortly after that she did fall asleep, and I got out of bed just after 6:00.

A few minutes after 7:00 I was about to take my walk when I heard her say something. I checked on her. She wanted to get up. She still didn’t know who I was or where she was. She just wanted to “get out of here.” She must have because she had been to the bathroom, dressed, and taken her pills before we left the house for Panera at 7:45.

An hour later, we were back at home where we started to look at one of her family photo books. We didn’t get beyond the cover photo when she said she was tired and wanted to rest. I’ll be eager to see if I have any problem getting her up for lunch. I am especially interested in getting there early so that we can get her back for a 1:30 hair appointment.

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Alzheimer’s is Making Its Presence Felt

As if I needed further confirmation, yesterday was another time when Alzheimer’s seems to be taking over our lives. It was Monday, my Rotary day and the day our sitter arrives at noon. I turned on some music to gently wake Kate around 10:40. That should have given us plenty of time to be ready, but that was not to be.

She was still asleep when I went to wake her at 11:00. She smiled and was in a good mood, but it was also a morning when she didn’t want to get up and didn’t recognize me. I explained that Cindy was coming to take her to lunch and that I would be glad to help her get ready. She said, “I’ll get up.” This is what she said repeatedly the day before and on the few other occasions when she didn’t want to get up. I tried not to push her because she is then defiant and isn’t going to comply.

I tried some music that she liked. We even sang a couple of songs together, but she wasn’t going to get up. I accepted the fact that she wasn’t and got her a breakfast bar so that she would at least get something in her stomach.

When Cindy arrived, I briefed her on the situation. I also took her to the bedroom to show her the clothes I had laid out for Kate. I told Kate goodbye, and she was quite accepting of my departure.

I had intended to go directly to the Y after Rotary. Instead I put in a call to Cindy to see how things were going. She didn’t answer. I decided to drop by the grocery for a few breakfast items and then go home to check on Kate. When I arrived, I discovered that Cindy had gotten her up and dressed and had given her a breakfast bar and a Dr. Pepper. We chatted briefly, and Kate seemed back to normal. She didn’t express any great enthusiasm to see me.

Cindy still had another hour and a half before she was to leave. I was encouraged by how Kate was doing and decided I would leave. I told Kate I had a few more errands to run and would be back a little later. She very adamantly said, “You are not.” At the time, she was eating a breakfast bar. I remembered that it was the last one and told her I forgotten to buy more (which was true) and needed to go back to the grocery store. She accepted that. I went back to the store. Then I dropped by Starbuck’s for a while before returning home. This was a time that I really appreciated the break and wished there had been time to go to the Y.

After Cindy left, we had about an hour before we would normally go to dinner. I suggested that Kate and I look through one of her family photo books. She liked the idea. We sat on the sofa and started to go through one of them. She was interested, but, within five minutes, she said, “Would you mind if I . . .?” She didn’t finish her sentence. I knew she was tired. She wanted to lie down for a while. I told her that would be fine. She must have been very tired because she actually went to sleep. An hour later, I asked if she was hungry, and we went to dinner.

She was tired when we got home. I put her in her chair in the bedroom and gave her the iPad. Then I turned on the evening news while I put fresh sheets on the bed. I soon noticed that she was just staring at the TV and hadn’t used her iPad at all. I asked if she would like to get ready for bed. Then we went through the routine of getting her teeth brushed and into her bedclothes. She was very cooperative. I put on some YouTube music videos that she likes, and she was asleep very shortly. That is unusual. I was especially surprised after she had gotten up so late and taken a nap just before dinner. She must have been very tired.

It was two weeks ago yesterday that we had our first experience like this. That was the day I thought she was depressed. None of the subsequent experiences made me think she was depressed. One or two times she just seemed tired. Saturday it seemed like a combination of being tired and being dehydrated and, perhaps, experiencing low blood sugar. Yesterday, it seemed to be a simple case of being tired.

I should add that almost simultaneously she has been unsteady on her feet. I say almost because she has experienced mobility problems for a while, but she has been particularly uneasy walking during the past two weeks.

I have reflected more on her symptoms. It seems like her body is in the process of shutting down. That is to be expected with Alzheimer’s and other forms of dementia. Part of the problem for me these past two weeks is my desire to continue living as we were. I plan to adapt to the current changes by accepting the fact that we may not be able to go out for lunch and, perhaps, not dinner on a regular basis. There are a variety of other ways that I can arrange to take care of meals.

The bigger issue for me is the loss of social contact. That has been very important for both of us; however, that is also something we should be able to manage. It is no surprise to me that we are facing this issue. At the time of Kate’s diagnosis, I never imagined that we would be able to live so “normally”  for so long. Of course, it hasn’t been normal at all, but we have been able to stay active. The suddenness of the recent changes has led me to respond as though this might be something that passes as quickly as it came.

I think it is good for caregivers to know what we can and cannot change. I have already accepted many things that are beyond my control with Kate’s Alzheimer’s. This may be one more change to which I will adapt. If this isn’t the time, it won’t be long until it is. I am ready to accept that.

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A Day of Surprises

After the experiences of the past two days, I was hopeful that yesterday would be better. Before telling you about it, I’ll “cut to the chase” and let you know that it was better in that she was able to get up and out during the day. I don’t mean to say that Kate failed to show any of her recent symptoms. In fact, it was a day of multiple surprises.

It started early. I awoke at 4:15 to go to the bathroom. After I returned to bed, Kate was cold and needed help getting the covers over her. I got up and took care of it. She chatted a little while. I must have been awake thirty to forty-five minutes. At 6:00, she wanted to go to the bathroom. Normally, I would have gotten up after getting her to bed again, but I decided to rest a little longer. I slept until 7:15.

About 8:30, I noticed on the video cam that she was getting up. I got to her and found that she seemed groggy but otherwise quite normal. She responded to me as though he knew me as her husband, but she wanted to go home. I helped her to the bathroom. She was a bit unsteady and very insecure, actually frightened that she might fall and wanted to hold my hand. Once in the bathroom, she said, “Sometimes I wonder what’s wrong with me.” I said, “You think something’s wrong?” She laughed and said, “Well, I think everybody wonders that.” I was glad that she said this in a way that convey no sense of concern or anxiety. She was simply being candid and then making light of it.

After she was dressed, she asked if she could lie down again. I suggested we go to the family room so that she could use the recliner. She has increasing difficulty getting up from a lying or sitting position. The recliner makes that easy although it scares her. I thought she might go back to sleep for a while and did not want to experience yesterday’s problem. I went to the kitchen and got her a breakfast bar. Most of the time when she rests I play music that is especially relaxing. I was glad that I did something different. I played albums of My Fair Lady, Oklahoma, and Sound of Music. She remained awake through all of it.

About 45 minutes before I wanted to leave for lunch, I asked if she would like to look at one of her photo books. She did, and we spent only a few minutes before she said she wanted to lie down on the sofa and rest. I got her up after thirty or forty minutes without a problem. She was ready to eat.

She was very talkative in the car and at lunch. She was so talkative that I didn’t play any music going to or coming back from lunch. I didn’t always understand what she was talking about, but much of it involved her feelings about our marriage.

She rested, but did not sleep, for almost three hours in the afternoon. I played music, but she was especially taken with the house, especially the family room where we were seated and the trees outside. This was the first time I recall her expressing enthusiasm for the branches of trees without their leaves that make up most of the trees on our neighbor’s property behind our house. She asked me a number of questions that made it clear that she had no idea it was our house. I didn’t correct her.

Something unusual happened late in the afternoon. I had asked if she would like me to read to her. She wasn’t enthusiastic, but I suggested I read The Velveteen Rabbit and told her I would stop if she wasn’t interested. I read for about five minutes. She wasn’t paying attention. I asked if she wanted me to stop. She did and said she wanted to talk with me about something serious. The expression on her face also conveyed an even more serious issue was confronting her. It turns out that she was very concerned about her mother who died fourteen years ago. Kate wanted me to know that she was thinking of moving to Fort Worth to take care of her. Although everything she said was rooted in a delusion, I was astounded by the rational way she approached the topic. She talked about her various options and why they wouldn’t work. She said her mother had many friends who could help but outlined reasons that would not work. Then she talked about paid caregivers and suggested they would never deliver the kind of care she could provide. She also talked about her mother’s condition and noted that sometimes she was rather “clear-headed” (I don’t remember the exact words she used.) and other times she wasn’t. The mentioned the nature of the mother-daughter relationship that would enable her to provide better care than anyone else.

She talked continuously for a good thirty to forty-five minutes. Most of that time she did not realize she was talking to me. I got the impression she thought I was in another room and would be back soon. Several times she mentioned that she would need to talk with me about a possible move to Texas. I was eager for us to leave for dinner so that we could get back for the Super Bowl, but she kept on talking.

(My interest in watching the Super Bowl is another surprise of the day. Although I have caught a few portions of a couple of games this season, I haven’t watched a pro game all season. I am, however, aware of the success of the Chiefs’ quarterback, Mahomes, and have been impressed that a man as young as he is could attain such stature so quickly. I think, however, that the real reason I was interested was that I just wanted to relax and amuse myself for a short time.)

I was finally able to stop her by suggesting we talk about this over dinner. She accepted, and we went to Panera. It was close, and I figured we could get back in time for the game. During the short car ride to the restaurant and at the table before we got our food, she continued to talk about somebody she thought had been at the house and was going to meet us at Panera. Her attention was diverted when we got our food, and I didn’t hear anything more about the issue.

Another problem developed as we left the restaurant. Although she had been getting along pretty well, she was still a little unsteady on her feet. She wanted to take her drink with her. As we walked out to the parking lot, we had to step down from a curb. Normally, I use two hands to help her, but I had her drink in one hand. As she stepped down her weight shifted, and she lost her balance and fell. Fortunately, it was a gentle fall. The problem was getting her up. At first, I tried to lift her from the front. That failed miserably. Then I got behind her and put one arm under her right arm and the other under her left arm and lifted. Success.

The day was not over yet. Once we were home, it looked like things were moving smoothly. She wanted to get ready for bed. I wanted to watch the game. I got her to the bathroom and had her toothbrush ready for her. After that, we ran into a problem. She forgot to brush her teeth and got in bed. She hadn’t taken her medicine or put on her nightgown. That was a time when she wanted to work on her hair. I suggested that she get her teeth brushed and put on her nightgown. Taking her daily medications is becoming more difficult. She often drops them. Sometimes she puts them in her mouth but doesn’t swallow them. I have to monitor this carefully and give her one at a time. Something I did or said caused her to be angry with me. She told me to shut up, and I did something I had never done before. I very gently said, “I love you, and I know you didn’t mean to say that. We’re both frustrated, but we need to respect each other.” She followed that by speaking back to me in the same tone of voice and agreed that we do need to respect each other. She went on to say that sometimes it seems like I am trying to control everything she does. I was somewhat startled by the rational, honest and loving way she responded. Getting her ready and into bed was easy after that.

It was halftime at the game. I took my shower and left the game on. When I came back the second half was about to begin. I sat down to watch. A little later, Kate said something like, “Wow, this is really something.” I thought she must be dreaming. When I looked, I saw that she was sitting with her head elevated and looking at the TV. I asked if she was enjoying the game. She enthusiastically said yes. I know she had no idea who was playing nor could she follow what was happening. I don’t know why she seemed so engaged with the game. Could it have been an effort to connect with me in a positive way after the tiff we had earlier? Was she trying somehow to relate to me? I don’t know. Her response to the game was certainly unusual.

That wasn’t the last of the day’s surprises. After the game, I got in bed and moved close to Kate. She was still awake and seemed concerned. I said, “What’s wrong?” She said, “I don’t know. I’m scared.” I remained close to her and tried to comfort her. This had to have been one of those times she was disturbed about not knowing anything, but the only thing she said that would suggest that was asking who I was. I gave her my name and told her I wasn’t sure what was wrong but that I would always be with her and that the two of us together would be able to handle anything that comes up.

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The Rest of the Story

As I finished my last post, I was seated in a chair beside our bed where Kate was resting. That was around 11:30. After that, I tried several other times to get her up without success. It was puzzling because she seemed so normal except that she wouldn’t get up. She was receptive when I said I wanted to take her to lunch, but each time she said she would like to rest a little longer.

I was finally successful just before 1:30; however, she was very unstable on her feet. I told her I thought we should go to a nearby urgent care center, but she was adamant about not going. I was able to get her to the family room where I put her in her recliner. Then I decided to call Kate’s brother’s wife who is a retired pharmacist. She has a good medical background and has been a caregiver for her two parents. That turned out to have been the best thing I could do. She mentioned that the symptoms I had observed were common among people who have been without food or liquids for an extended period of time. I immediately remembered problems my dad experienced with low blood sugar. That sounded like a plausible cause of the problem.

After the call, I opened a can of Dr. Pepper and poured it into a cup for her. I also gave her two breakfast bars and let her continue to rest. It wasn’t long before she began to perk up, but I wasn’t sure until she got up a little later when we left for dinner. She was still a bit unstable and wanted to hold onto me, but she didn’t show any signs of weakness as she had earlier.

She had a good dinner and ate everything on her plate. We came home where I put on YouTube videos and played them over two hours before she got to bed. The videos kept her attention the whole time. It was very welcome experience after the morning and early afternoon. I felt a sense of relief when we were in bed.

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Highs and Lows Continue

I look forward to another day that I can call a “Good Day,” but right now it looks like our lives are a mixture of highs and lows. That is the story for yesterday. Kate was awake early and wanted to go to the bathroom. She was unusually unsteady and frightened. She held my hand tightly as we waked to the bathroom. At one point, she thought she was going to fall. After finishing in the bathroom, she went back to bed and wanted me to stay with her.

After an hour, I tried to get her up again, but she was too tired and seemed weak. I told her I wanted to take her to lunch before the sitter arrived, but she still didn’t want to get up. I decided to forego lunch with her and let her rest. I did, however, manage to get her up and dressed before Mary arrived. She was very uneasy about standing up and said, “I don’t feel good.” I asked if she were in pain or wanted to throw up. At first, she said she didn’t. Then she said she wanted to throw up. I brought her a pan. She couldn’t throw up. I think she must have picked up on my suggestion and didn’t know what I meant. We walked slowly from the bedroom into the family room. She seemed afraid and unsteady. She wanted to lie down. I took her to her recliner where she was when Mary arrived.

I met her at the door and explained what was going on. I also told her we had bananas and breakfast bars if Kate wanted something to eat. I also reminded her that I have gift cards for both Panera and Applebee’s should she want a meal. When Mary walked in, Kate seemed perfectly normal. I put the chair in its upright position and left. I thought she might be all right. When I returned, Kate was still sitting in the chair. I don’t think she had been asleep. All she had eaten was a banana.

After Mary left, Kate was eager to “go home.” I told her I would take her and that we could get a pizza on the way. Kate was still unsteady on her feet and almost lost her balance as we walked to the car. Everything seemed fine again at dinner. Again, I thought the problem was over; however, she was still unsteady and frightened when she walked.

Once we were home I decided not to watch the news and turn on YouTube for some music that Kate might enjoy. Kate watched for almost two full hours and enjoyed every minute. It was a great time for both of us. She was enthusiastic and would have watched longer if I hadn’t told her it was time for bed. That may have been the source of the next problem.

As we went through the nightly routine of going to the bathroom, brushing teeth and getting her night clothes on, she became irritated with me. She said, “You don’t know what it is like to have someone tell you what to do all the time.” I apologized. Then she did the same. As I walked her to the bed from the bathroom, she said she was all right and let go of my hand. Then she became unsteady and fell on the bed. No harm was done, but it scared both of us. I was up another thirty minutes before joining her in bed. When I got in, she was glad to see me. We ended on a high note.

That leads me to this morning. Once again, she was up early and wanted to go to the bathroom. She was as unsteady and frightened as she was yesterday. She also mentioned that she didn’t “feel good” but couldn’t identify anything that was wrong. Several times she said, “I don’t know what’s wrong with me. I’m not usually like this.” She asked where she was. I told her we were in Knoxville, and she said, “I knew that. I’m having to learn things that I already know.” I told her I was glad to help her with anything she wanted to know.

I suggested she take a shower. She didn’t protest at all. Her insecurity continued and she held a security bar the entire time while I bathed her. Several times she expressed her appreciation and said she wished she could do things for me.

She wanted to lie down again after drying off. Once she was in the bed, she said, “Sometimes I can do things and sometimes I can’t. That may be a sign that I am getting better.” She asked if I would stay with her. That’s where I’ve been for the past hour. I just asked her about lunch. She indicated that she would like to but not now. It’s still just 11:20. I plan to give another thirty or forty-five minutes before asking again. If it is like yesterday, it could be a long time.

I’m still trying to make sense out of what is happening. By best guess right now is that she may not be “sick.” Instead, it may be changes that are related to her Alzheimer’s. I did a Google search on balance among Alzheimer’s patients and found quite a few references to just what I witnessed yesterday and today. Unless I see clearer signs of an infection of some type, I will take this as another symptom that Kate is experiencing with her Alzheimer’s. She has also had more difficulty getting up from a seated position during the past couple of days. Her mobility problems could easily have as great an impact on our lives as her memory loss.

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Caregivers As Problem Solvers

I often talk about our having “good days,” but what is becoming more common is a mixture of problem-solving and moments of pleasure. That is what it has been like the past few days.

Kate was up early on Monday and in a good mood but confused. She wanted to take a shower. Afterwards, I started to help her get dressed, but she wanted to get back in bed before we finished. We had plenty of time before the sitter was scheduled to arrive at noon. I let her rest until an hour before then; however, she didn’t want to get up. It was not a repeat of Friday when she refused. She seemed tired, not depressed. I even asked if she were depressed. She said she wasn’t, and the way she spoke and smiled suggested she was telling the truth. I was able to encourage her, and she got up.

When Cindy arrived, Kate greeted her warmly with a big smile. I mentioned that Cindy was going to take her lunch. She wanted me to go to lunch with them. When I told her I was going to the Y and to a meeting after that, she frowned. It didn’t look as though she was seriously concerned but preferred that I be with her.

She was resting on the sofa when I returned. That is typical. After Cindy left, Kate and I sat together on the sofa while I read from a photo book of her mother’s family. She really enjoyed it. We went through part of the book for about forty-five minutes and then went to dinner.

After we returned home, she started to work on her iPad. Then she decided to get ready for bed. I turned on the news, and she appeared to watch with me for most of the hour before calling it a night.

Later as I was getting ready to shower, I noticed that she was awake. I walked over to the bed. She looked worried. I asked if she was all right. She said she was, but she wasn’t very convincing. I said, “It looks like you’re worried. Are You?” She hesitated and then said, “I’m all right. You keep going.” I said, “I will always be with you.” She smiled. I said, “We’ll do this together.” I don’t know exactly what was on her mind. I know it was concern about her condition. Neither of us addressed that directly, but I feel that we were communicating our mutual understanding indirectly. This was a sad moment.

Tuesday was a good day, but we did have an unusual experience at dinner. I believe I have mentioned that Kate sometimes sees little spots on the table that she refers to as “Little Things.” She often refers to them with the pronoun “he” and sometimes comments on their moving. This was one of those times. It usually seems like a harmless form of amusement. It was a little different that night. She saw more of them and thought they were harmful in some way. She thought they were in her meal of which she ate very little. She didn’t want to have dessert thinking they might be in it as well. She just wanted to go home. She was fine after we left.

I have been sleeping very well lately, but yesterday morning I awoke at 3:30 and couldn’t go back to sleep. I got up again at 4:15 and took a twenty-minute walk in the house. I got back in bed but still couldn’t sleep. At 5:45, I decided to get up for the day. I hadn’t been in the bathroom more than a couple of minutes before I heard Kate say, “Hey.” I went over to the bed and asked if I could help her. She said, “I don’t know.” She looked frightened, and I said, “You look scared. Are you?” She said she was. I got back in bed with her. She said, “I’m glad you’re here.”

I tried to comfort her for the next ten minutes or so. She seemed to be more relaxed, and I told her I might get up and get dressed. She wanted me to stay and asked if she was supposed to do something today. She said, “Do I need to get the eggs?” I’m not sure whether she really meant eggs or she just used the wrong word as she sometimes does. I told her she wasn’t responsible for anything “today,” that she could just relax and do whatever she and I wanted to do.

I put on some relaxing music and played it very softly as we talked. I spoke to her slowly and softly and comforted her. Off and on she responded to something I said with “I remember you said that last time.” I don’t ever recall her saying that before. At one point, I told her I loved her. She said she loved me too and was glad I was with her. Then she very naturally asked, “Who are you?” Two or three times she began to shake and said, “I’m scared.” Gradually she calmed down and was almost asleep at 7:00 when I again mentioned getting up to dress and have breakfast. She said that was fine.

About 8:45, I heard her call me again. She had gotten out of bed and wanted to go to the bathroom. She asked where she was and said she wanted to “get out of here.” I told her I would help her. It was also a time when she did not remember me. She let me help in the bathroom and dressing, but she was very unsure about me.

As we walked to the kitchen for her morning meds, she said, “I just want to lie down.” I took her over to her recliner. She sat down, and I put it in its fully reclined position. She forgot all about leaving and rested another forty-five minutes before she opened her eyes and looked over at me. She smiled. I’m not sure if she remembered my name or our relationship, but she was quite at ease with me. Then closed her eyes and continued resting.

I got her up in time for us to have lunch together before the sitter arrived. After lunch, she rested on the sofa. Mary arrived shortly after that, and I left. Kate was very comfortable about that. The two of them were chatting as I walked out the door.

I was surprised to see Kate sitting on the sofa looking at one of her photo books when I returned. Typically, she would be resting. She said she was glad to see me though she didn’t look at all disturbed that I had been gone. I walked Mary to the door, and she told me that Kate had asked where I was a number of times but didn’t seem unduly concerned.

I sat down to go through the photo book with her. She wanted me to identify the various people in the photos, but she quickly found that overwhelming. I suggested we take a break and go to dinner. She wanted to go to the bathroom, and I took her.

When she was finished, she was very disturbed about people we would see somewhere, apparently in her hometown in Texas. I told her it would be a long time before we made a trip to Texas. That didn’t help. She said she couldn’t help thinking about how her mother was feeling. On the way to the restaurant, she continued to worry about these people and how she should react to them. I assured her I would be with her and would try to see that everything went smoothly. She appreciated that, but it didn’t relieve her pain.

Once we were seated at our table, she continued to talk about these people. I never figured out what it was that she was afraid would happen, only that she was very disturbed. At one point, she started crying at the table. She recovered quickly, but it wasn’t until the food arrived that her attention was diverted, and she never mentioned anything else about it.

Before we left, we had an experience that was similar to the one we had the night before. When our server brought the check, Kate pointed to the table top and asked if the server could see “them.” She didn’t. Kate pressed her finger on the table and held it up to the server and said, “See?” The server played the game well. She pretended to pick “it” up from her finger and said, “Now, I’ve got it.”

The day ended well. We watched a couple of YouTube videos about the story and filming of The Sound of Music. I know she couldn’t follow it, but she was quite interested. As usual, she was awake when I got in bed. That is the most predictable moment of the entire day. She almost always seems at ease and glad that I have joined her. We usually talk briefly, express our love for each other, and say good night. I was glad to end the day on a positive note. We are certainly having more days that call for greater problem solving.

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An Unusual Day, Quite a Contrast with the Day Before

 

Caregivers for people with dementia recognize the need for flexibility. They know that things can and do change rather rapidly. Such was the case with Kate yesterday. I am glad that everything went so well the day before. Yesterday was certainly different.

We had a good start when she awoke around 7:45. I took her to the bathroom, and she took her shower without a problem. As I started to dress her, I was feeling optimistic. She wasn’t fully dressed when she wanted to lie down. That is not unusual, and we had plenty of time, so I told her she could. I gave her about ten minutes. Then I tried to finish dressing her. She wanted a little more time. I wasn’t concerned. I knew I could let her sleep another two hours.

At 10:45, I felt it was time to get her up. That would allow us to leave for lunch between 11:30 and 11:45 and get back for the sitter at 1:00. I encountered a problem when she didn’t want to get up. I told her I would be leaving for the Y and would like to take her to lunch before Mary arrived. She didn’t want to get up and told me to go ahead without her. I told her I didn’t want to leave her alone and that I really liked eating with her. Then I asked if she would do it for me. She still didn’t want to get up.

That was something new. She had always been willing to cooperate with me and get up even when she didn’t want to. I knew something was wrong and asked if she was feeling all right. She first said, “I don’t know.” Then she said, “I just feel blah.” I felt she was in a depressed state and said, “You seem depressed.” She said she was. Then I said, “If you are, I think I might be able to help you, but I would need you to get up. I think I can make you feel better if we go to lunch together.” She wasn’t buying that.

I tried several things to see if I could help her out of this state. I showed her a few photos from her “Big Sister” album. She smiled at the cover photo, but didn’t’ show much interest. Then I read about her grandfather in another book. I couldn’t find anything to help her.

It was then that I reminded her that Mary would be coming and that she could help her dress although I thought she might prefer me to help her. She agreed, but she still wouldn’t get up. I decided not to push her. I told her she could rest and that Mary would help her dress. She said she was fine with that.

When Mary arrived, I explained what had happened and took her back to the bedroom. I told Kate that Mary was here and that I was leaving. She greeted Mary with a smile. They exchanged a few pleasantries, and I left.

I checked via the video cam while I was gone and also called Mary once. Kate remained in bed the entire time. I had a feeling that it was easier to tell me she was fine with Mary’s helping her dress than to actually let her. When I got home, she was still in bed but awake. She smiled at me. I could tell by the expression on her face that her depression was over.

Mary left, and I asked Kate if she would like me to take her out for dinner. She indicated she wanted to go to the bathroom. I took her and helped her to the bathroom and finished dressing her. She acted as though there had never been a problem. I never brought it up. I feel sure she began to recover and wanted to go to the bathroom but felt uneasy asking Mary to take her. The rest of the evening was quite normal. We both acted like nothing had happened.

Kate has had a minor problem with depression since the early days of our marriage, but it has never kept her from doing anything. I never recall a time when she felt “blah” and wanted to remain in bed. Like all of her other behaviors, I can’t explain what brought this on. My suspicion is that it involves her keen awareness of how little she is able to do. She has been especially insecure the past few days, not only in her behavior but also in her verbal expressions. Fright has typically been the most negative of her responses to what she is experiencing. It doesn’t seem strange that depression might be a natural response as well.

For me, there is a big difference between fright and depression. I have always been able to reduce her fright, but I couldn’t break through her depression. Like fright, depression may not occur regularly. I plan to have a talk with her doctor and the doctor’s social worker. I want to be better prepared next time.

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Beginning Our 10th Year Post-Diagnosis

 

Tuesday, the first day of our 10th year Living with Alzheimer’s” started early and with some confusion; however, the day was punctuated with “Happy Moments” as well. About 5:30, I heard Kate chuckle. I chuckled back, and she responded with more chuckles. Then she started pointing to the ceiling moving her arm from one side of the room to the other. As she did this, she commented on “things” (that were not really there) that she liked. It wasn’t clear to me whether she was asleep or awake. When I said something to her, she responded. After a few minutes, I decided she was awake. She then immediately closed her eyes and went to sleep. This was strikingly sudden. It makes me think she really had been dreaming all along.

At 5:50, I told her I was going to get up. She told me not to leave her. She didn’t seem afraid, but she did say, “I don’t know how to say it, but I feel (paused while thinking of the right word) safe with you.” I stayed with her another thirty minutes before telling her I was going to get up and asked if she would be all right. She said she was fine. After I was dressed, she was still awake. I mentioned I was going to the kitchen and to call me if she needed anything. She said that would be all right, but she wanted me to come back and sit in a chair beside the bed.

As I was preparing to put my breakfast dishes in the washer, I heard her call. She wanted to go home. I told her I would take her. I got her to the bathroom and dressed quite easily. During that time, she said she wanted to “get out of here.” She also mentioned girls that were either here or would be coming. This also came up in the afternoon.

We went to Panera arriving about 8:15. That is very early for us. She worked a little on iPad puzzles but stopped to eat her muffin. She was tired and wanted to go home before 9:00. She rested for a couple of hours before we went to lunch. She was very talkative. Most of her conversation dealt with our marriage and also her feelings about our being a good match. At one point, she said, “You know we are so different.” She wanted to continue, but she didn’t know how to express her thoughts. I said, “But we’re so much alike on the things that matter.” She said, “Exactly.” It was a cold day, and we took a few minutes to get our coats on before leaving. Kate also had gloves. She asked if I could take a picture and wanted to make sure I got the gloves in the photo. It’s unusual for her to request a photo of herself. She also asked me to take one at another restaurant a few weeks ago. She wanted a picture of the two of us, and I took a selfie before we got in the car.

When we got home, she rested for an hour. I asked if she would like me to read something to her. She did, and I picked up the photo book of her mother’s family and read several things about her grandfather. She loved hearing about him and was most impressed. I’ve read this to her before, but this was the strongest reaction she has had yet.

Then I read a section that dealt with Battle Creek where her mother lived until marrying Kate’s father and moving to Texas. It focused on the work of the Kelloggs in the development of cereal at the Battle Creek Sanitarium (“The San”) where her grandfather was a doctor. She kept talking about “him.” I didn’t know whether she was talking about her grandfather, John Harvey Kellogg (CEO of The San), or W. K. Kellogg (who left the San and established the cereal company). She thought I had known “him.” I told her that her grandfather had died before I was born and that I was a child when the Kellogg brothers died. That didn’t penetrate at all. She kept saying, “And you knew him.” She seemed impressed. I am sure she felt I knew him because I was reading about all three of these men. To her, it probably sounded like I was telling her a story from my first-hand experience.

She finally tired and wanted to rest again. It was only a short time before she started talking and continued for an hour. I made some facilitating comments, but she didn’t appear to need them. She talked about something that is a variation of a topic she has talked about a number of times before. It always involves her, or our, helping people. A large portion of the previous conversations have involved educating women in impoverished parts of the world. This time she talked about a program in which we were already involved. It was designed to provide a broad range of education and job training for immigrants to the United States. She mentioned a selection process to determine those who would benefit most. The training itself was rather comprehensive and dealt with information about US culture, training for job interviews, and assistance in locating job opportunities that would match the skills and interests of the students. I was amazed at the details she brought up and the reasons each of these things was necessary.

The next surprise of the day came as we were about to leave for dinner. Without any prior signs or indications, Kate became very worried about not having delivered something to a man whose name she didn’t know. From what she said, she thought she was to deliver refreshments for a reception of some kind. She couldn’t tell me any specifics, but she became distraught over her failure to do what she had promised. As we drove to the restaurant, she wondered if I might be able to call him and work out a way to get it to him. After parking the car, I pretended to call him and that he had told me that the reception was actually the next day and that she had no reason to worry or apologize. This effort was unsuccessful.

As we walked up to the restaurant, the hostess opened the door and greeted us. Kate tried to act as though nothing was wrong, but it didn’t work. It did begin a process of diversion that got her mind off of what she believed was a failure to deliver on a promise. This process involved our conversation with our server, chatting briefly with a couple we know who sat at the table next to ours, and eating. Long before we finished our meal, she seemed to have forgotten the entire thing.

I had one more surprise at 12:30 yesterday morning when I heard her call me by name. I looked up from the bed to see her standing in the doorway to our bedroom. I quickly got up and went to her. She was very upset. She had gotten up to go to the bathroom, something that is exceedingly rare. To the best of my knowledge, she has never gotten out of bed without my noticing. I got her back to bed and then went to turn off the lights in the hallway. That’s when I discovered she had been walking around the house. Lights were on in two other bedrooms, family room, living room, dining room, and kitchen. She apparently came out of the bathroom and couldn’t remember how to get back to our bedroom and spent an unknown amount of time going through the house trying to find me. The good news is that she was able to calm down once she had located me. Another crisis was over. Our tenth year “Living with Alzheimer’s” is off to quite a start.

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Nine Years Ago Today

Most people remember specific dates that represent something significant that happened in their lives. I have a number of those, our wedding date, Kate’s birthday along with those of our children, grandchildren, parents, and siblings. We celebrate dates like these, but there are also dates when something happened that we don’t think of celebrating. January 21, 2011, is that kind of date for me. Nine years ago today, Kate’s doctor delivered the news that she has Alzheimer’s.

At the time, the news was devastating, but we made a commitment to make the most of the quality time remaining to us. I had no idea how long that would last. Here we are nine years later and still able to enjoy life and each other. I am very grateful for that. I can honestly say that these years have been among the best of our marriage.

Today, however, I feel other emotions as well. They are more like the way ones I felt when she received the diagnosis. I am just as intent on making the most of our time together, but at this last stage of her disease, I am more than bit apprehensive. I know that we won’t continue to live the way we have the past nine years. We are at the beginning of the stage people imagine when they think of Alzheimer’s. Our quality time is going to be more limited. This doesn’t mean our experience of “Happy Moments” will cease. It is just that they will be different. Even in the past few weeks, I see the challenges increasing. I mentioned a couple of them in my previous post. Another one occurred yesterday.

Kate was just as tired as the previous morning, perhaps even more so. Off and on for an hour and a half, I worked to gently wake her before my efforts met with success. I began with some soft music and gradually changed to more lively music. The first two two or three times I went to check on her, she was sleeping so soundly that she didn’t hear me at all. That has never happened before. My reward was that she smiled when she finally responded the last time I tried.

She was slow to get up and wanted to rest a little longer after she was partially dressed. While she rested, we talked. She repeatedly asked my name and where she was. This was a time when she didn’t remember me as her husband, but she spoke very comfortably with me. She didn’t express any great surprise when I told her we were married, but that didn’t stop her from asking my name.

She was in a good humor and kidded me a good bit. While lying in bed, she wanted us to sing something. I sang Edelweiss, but she didn’t sing along because she couldn’t remember the words. She wanted me to sing it again. I did and then played it on our audio system. That way I could give her the words just before each phrase. She enjoys singing.  It was an unusual and pleasant way to start our day.

It was our day for the sitter. When she arrived, Kate wondered who was at the door. I told her it was “Cindy, your friend who takes you to lunch on Monday.” She didn’t remember her but was very nonchalant in her response. She greeted Cindy warmly and never hesitated about my leaving with her. I didn’t have Rotary yesterday and almost canceled the sitter, but I thought I could use the time. I have also wanted to strengthen the bond between the two of them. I have had the distinct impression that Kate favors the sitter who comes on Wednesday and Friday and has been with since our second week with sitters. I believe that continuity helps and hope we don’t ever lose her.

The rest of our day went well. Kate was especially taken with some YouTube music videos I played for her last night. That took the place of her iPad on which she had started to work puzzles but lost interest. It was nice to see her enjoying herself. She was still awake when I got in bed. We chatted briefly and expressed our love for each other.

I make a point of mentioning the challenges of getting her up, her confusion and failure to remember my name and our relationship along with the good time we had once she was up. This is a good snapshot of what “Living with Alzheimer’s” is like for us. As long as she is happy, we will continue to live well. I hope I am wrong about the changes I believe will occur in the coming year. Despite my expectations, I am very grateful for the good times we have had in the past and feel sure we will have more in the future. We have, indeed, been fortunate.