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Mixture of Positive and Negative Experiences

About 10:00 yesterday morning, I heard Kate say, “Hello.” Via my web cam, I could see that she was sitting up in bed. When I got to the bedroom, I found she was in a cheerful mood but was having another delusion. The only thing I could understand was that it involved teaching in some way. I listened to her for almost thirty minutes before seeing if she was ready to get up. She wasn’t and let her lie down and told her to call me if she needed anything.

At noon, I checked to see if she was ready to get up. I was careful not to move too quickly so as not to cause her to resist. I was able to get her up and to the bathroom where I encountered my first problem. She wouldn’t sit on the toilet. I shifted gears and told her she could brush her teeth. When she finished, I tried again to get her to use the toilet. That didn’t work, and I took her back to the bedroom to help her dress.

When I asked her to take off her soiled underwear, she refused. She wanted to know why. I explained that she needed to put on clean underwear before getting dressed. She never agreed. Then she wanted to lie down. I decided the break might be a better. If she could rest of sleep a little longer, she might respond differently when I tried again.

That worked. I was able to get her up at 1:30. I didn’t have any problem getting her to the toilet and dressed. She was in good humor at lunch. After lunch we spent the balance of the day until time for dinner looking at her photo books. It was a very bright spot in our day.

This is not to say there were no problems. I don’t think I have adequately conveyed how difficult it is for her to understand instructions and explanations or the seriousness of her vision problems. When I gave her a sandwich and a cup of apple sauce, she didn’t know what they were or what she was to do with them. My explanations were only minimally effective. I was only able to get her to eat her sandwich by picking it up and putting it to her mouth. It was similar with the apple sauce. In that case, she only ate what I spoon fed her and nothing more. Part of the reason is that she doesn’t remember what is in front of her, but it also relates to not seeing it.

We ate out for dinner. After parking, she didn’t want to get out of the car to enter the restaurant. She didn’t respond with a verbal refusal but a passive aggressive one. She just sat in her seat while I held the door open with my hand extended to assist her. It took my repeated encouragement to get her to step out.

As we entered the restaurant, we turned to the right to walk past a line of booths. I had already turned down a seat at one of them because there is a step up of about four inches. When I can, I try to avoid things like that because Kate can easily trip. I didn’t think about a problem as we turned to follow the hostess to our table. Her right foot hit the corner of the first booth, and she screamed. She wasn’t in danger of falling, but she was frightened and definitely got the attention of those in the dining room.

We did not have our normally pleasant dinner. She was rather subdued and out of touch with what was happening around her or in front of her on the table. As I always do, I buttered her bread and placed it in front of her. When I saw that she wasn’t eating it, I asked her about it. She couldn’t see the bread on her plate. Similarly, she didn’t begin to eat her food after it was delivered. I had to feed her several bites of her entrée  to get her started. We haven’t been eating many desserts lately. I decided she might need a treat and ordered one. She didn’t know what to do with it. Again, I had to feed her the first couple of bites. She expressed no pleasure and ate very little.

Once we were home, I gave her a photo book to look at while I caught some of the evening news and then my shower. She took interest and spent almost an hour looking at it. She was confused, however, and asked me to help her understand it when I got out of the shower. I told her I would be happy to do that.  After my shower, I suggested she get into her night clothes and the two of us could look at it together.

She was cooperative. I don’t think that had anything to do with my telling her I would look through the book with her. I think I just hit her in a cooperative moment. We spent about thirty minutes looking at the book. Like our afternoon, it was a Happy Moment together. When I suggested we go to bed, she accepted without a problem.

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Sunday: The Story Continues

Sunday morning began with another challenge. I keep my iPad beside me at my desk in the kitchen. It is connected to a camera in the bedroom. About 8:45, I noticed that that she was sitting on the floor beside the bed. When I reached her, I found that she was relaxed and fine. She apparently had slipped out of bed while sleeping. (Recently, she has been moving around on the bed a good bit. When she gets in bed, her head and shoulders are in the right place, but her feet often hang over the edge. I move her legs over, but she invariably moves them back. I have been concerned about her falling out and have ordered a bed rail that is supposed to be delivered today.)

I immediately recalled her fall several weeks ago. That one required my calling 911 to help get her up. This time she was in a better position, sitting up with her back against the bed. It was easier but took 20-30 minutes. I put an ottoman in front of her. With a lot of coaching, I got her to put her arms across the top of it. Then with my arms under her arm pits I lifted her while she got her legs in position to stand.

I was able to get her to the bathroom and dressed, and we left for lunch about 11:45. Lunch went well, and we got home just before 2:00.

She wanted to rest and did so for almost an hour. Then she started one of her long conversations, much of which I couldn’t understand. It involved some kind of project she was working on. It’s not that I can’t understand many of her words. It’s that she mixes incorrect words and sometimes unintelligible words. The conversation lasted almost an hour and a half.

I finally distracted her by putting her robotic cat in her lap. That entertained her until we began a Zoom call with our son. That went well. As I did on our previous call, I left for 5-10 minutes while she and Kevin talked. I hope to do that in our future calls as well.

It was time for dinner after that, and we got a takeout meal. She was quiet during most of the meal but started talking about a project in which she was working. It involved helping people with something I couldn’t figure out. She was so wrapped up in this that once again, I could not get her interested in changing into her night clothes and going to bed.

I needed to take my shower, and she came into the bathroom twice to get me to come to her and continue our conversation. I told her I would come as soon as I got out.

After my shower, I was still unable to interest her in getting ready for bed.

Around 8:45, I went to her  where she was seated on the love seat in the family room. I spoke to her as though our earlier conversation had never occurred. I was cheerful, took a seat beside her, and told her I was going to read a book I thought she would enjoy. She surprised me by sitting down to listen as I read The Velveteen Rabbit. It wasn’t long, however, before she picked up one of her photo books. I told her I would read that as soon as we finished TVR. She reluctantly accepted that.

I had just started reading again when she began to look for something else to amuse her. I got the robotic rabbit. She was interested for a while but then looked for another distraction. I gave up on reading and told her it was time for bed. I told her I was going to the bedroom and invited her to come with me. She said, “I’ll just stay here a while.” As I left the room, she was talking as though another person or group of people were with her. She talked constantly after I left. I went in twice to see if I could get her to come back to the bedroom. She was very calm and said she would just stay there.

Shortly after 10:00, I wasn’t sure how much longer she might stay up talking. I remembered having a partial prescription of Trazadone. She had taken it for several years to help her sleep. With her doctor’s approval, I discontinued that in the spring. I decided to give her half a tablet and went to bed. I set the alarm on my phone for 30 minutes. It went off at 11:00.

I went back to the family room. She was still talking. I told her it was late and asked if she would like to join me in the bedroom. She agreed, and we went to bed without any further complications.

She woke up around 10:00 yesterday morning and seemed fine until I was ready to get her up. She wasn’t ready. I told her I would come back later which I did at 10:45. She was in a good mood and got up with minimal difficulty.

It was still a little early for lunch, so I gave her some apple juice and a slice of cheese toast. She ate only half of it but drank two large glasses of juice. The sitter arrived while we were at the table. It was time for me to leave for Rotary. Kate didn’t seem bothered by the fact that I was leaving. I attributed that to her not knowing me. Neither was she pleased that Cindy had arrived.

When I returned, Cindy told me that Kate didn’t eat the sandwich I had left for her lunch. She just sat there for a long time without engaging in conversation though Cindy tried to get her to agree to go to the family room. After an hour, Kate agreed. Once in the family room, she wanted to rest and was still resting when I got home.

I was able to get her up for dinner at a nearby Mexican restaurant. As we left the restaurant, Kate was too frightened to step off the curb to get to the car. Twice, without success, I moved the car to get close to the curb so that it might be easier for her. After ten minutes, we walked back to the restaurant where I asked the owner if he could help me. I got in the car and drove the car close to the curb in front of the restaurant. I was definitely close. The front tire was partially up the curb. Then the restaurant owner and I worked together to help her into the car. That will probably be our last time at that restaurant unless I can get a board to serve as a portable ramp to carry with me.

Kate was tired when we got home and was in bed by 7:30 without our encountering a problem. That was a relief.

Earlier in the day, I sent a message to Kate’s doctor through the patient portal. I described the events of the past week and talked briefly to her nurse who has forwarded the message to the doc. I hope to hear from her today.

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A Week of Challenges

If you’re a regular visitor to this blog, you have no doubt noticed the long delay since my last post. There are good reasons. Apart from the temporary focus on our recent election, they all involve Kate’s changes that have consumed more of my time. Here is an outline of what happened.

I’ve commented numerous times on Kate’s morning confusion. Sometimes, her response is uneasiness or fright. Until last week, that has been infrequent, and I have been able to get her up. Once she is up, her uneasiness subsides in a short time (10-15 minutes). Periodically, I have also reported that she has refused to get up in the morning. That happened four consecutive days last week.

She had a good day on Monday. She was in good humor and didn’t rest much at all during the day. In fact, I was surprised that she got up early enough for breakfast the next morning. It wasn’t long after that when she rested for 30-45 minutes. We started to look at one of her photo books before she wanted to rest again. This didn’t seem strange because she had lost so much sleep the day before.

The problem occurred when I couldn’t get her up for lunch. I didn’t push her at all but periodically checked to see if she was ready to get to dinner. She awakened periodically during the time she rested and seemed very relaxed. Then she went back to sleep. She was ready to get up about 4:15. We went out to dinner. She went back to sleep right after getting home. That made me think that she would be up early yesterday, but I was wrong.

Not only did she not get up early, but she didn’t want to get up at all. I tried to get her up starting at 11:30. I hoped that I could get her up in time to eat lunch before the sitter arrived at 1:00. She was uneasy, but I got her up. Things fell apart when we got to the bathroom. She wouldn’t go in. It often takes encouragement to get her to use the toilet. She was adamant about not going into the bathroom and insisted on going back to bed.

I tried one or two other times to get her up before deciding to let the sitter handle it. The sitter tried several times before succeeding after 2:30. Thursday and Friday brought variations on this same theme. I was able to get her up before 1:00, but she was very resistant. She was scared and kept saying, “I can’t.” I repeatedly encouraged her and told her I would help her (something I always do anyway). Both days I got her into a sitting position, but she wouldn’t stand up. She sat on the side of the bed between 30 and 40 minutes each day before I was able to help her stand and go to the bathroom.

In addition, getting her to bed is becoming a problem. For a long time, she has been getting ready for bed between 7:15 and 7:30. Several weeks ago, she didn’t want to get ready that early. That broke a well-established pattern, and it started requiring more time and effort to get her to change into her night clothes. That was especially difficult two nights last week. I won’t go through all the details, but here is what happened Friday afternoon and evening.

Although Kate was slow getting up, she lighted up when the sitter arrived. They were having lunch together when I left. She was disappointed I was going but handled it well. When I returned, she and Mary were talking. Kate hadn’t rested at all while I was gone. She was tired and rested about twenty minutes before we left to pick up our dinner. She was very talkative when we went to the bedroom after dinner. She was delusional but happy. I listened to her for almost an hour before attempting to get her ready for bed. I was successful getting her to the bathroom, but she was hostile and refused to get into her night clothes. I decided it was not worth it to try any longer, and she went to bed in her clothes.

Saturday was a good day. She was up in time for me to give her a shower before going to lunch. We had a pleasant afternoon and had no trouble that night.

Yesterday (Sunday) brought other problems. I’ll comment on that in my next post.

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So, How Are Things Going?

It’s very hard for someone who doesn’t live with a person with dementia to grasp how far one has traveled on this journey. I know that was true for me. I am sure my dad noticed signs of my mom’s dementia years before I was aware.

I believe the typical image of a person with Alzheimer’s is heavily influenced by our perceptions of the last stage of the disease. Before that, many people don’t recognize the dementia at all or fail to understand how far the disease has progressed. Kate was diagnosed almost ten years ago, but it is only in the past 2-3 years that it has been more obvious to those who spend little time with her.

That is what prompts me to write this particular post. We have crossed another milestone on Kate’s journey. It is easier now for people to tell that she has Alzheimer’s. That is true even for people who are with her a short time. Having said that, I don’t believe many people would recognize just how far along she is. I see it because I am with her so much. That gives me many opportunities to observe how she functions. Overall, her changes have been very gradual, but they have been much more evident even in the past month or two. It even seems like she has changed a lot in the past two weeks. Let me summarize a few of the things that make me say this.

First, and foremost, she has reached the point at which her rational thought/abilities have almost completely vanished. By that I mean her memory for names, places, events, and processes (how to do things) is at a disturbing low point.

Simultaneously, her intuitive thought/abilities are on high alert. Her experience of joy, sadness, fear, and anxiety are more evident. The fear and anxiety are troublesome to me as well as to her. On the other hand, all the positive emotions related to her to her senses bring intense moments of pleasure as well. Sometimes we experience a mixture of both good and bad.

Two days ago, I helped her up after she had rested. She was confused and uneasy. She knows something is seriously wrong with her, and it was evident. I looked in her eyes and said, “I love you, and I want you to know that I will always be here to help you.” She cried, and we embraced. It wasn’t that the underlying problem was solved, but she was comforted. It was touching moment for us, and we were able to move on.

For a long time, she has been insecure, but that has increased considerably. She has always wanted to do the “right thing.” Now that her memory is gone she doesn’t even know the right thing. When I give her choices like “Would you like to get up now or rest a while longer?” Her typical answer is “I don’t know.” It is evident in the morning when needs instructions on everything she is to do in the bathroom.

She often doesn’t recognize her napkin and wants to know what to do with it. When I tell her she can’t understand what I have said. When we eat out, I generally put the napkin in her lap. Invariably, she removes it. She often wants to use it as a placemat. When that happens, I simply ask the server for another napkin. She never remembers what she is drinking or if the glass is hers.

The most obvious sign of her insecurity is her hesitation when walking or sitting down. She walks as though she is blind, very short shuffle steps without lifting her feet very much. Any change in elevation is a problem. Naturally, that involves stairs, but it also includes small variations like flagstone walkways, or any surface with color variations that she perceives as differences in elevation.

I have long heard that putting a black carpet or doormat in front of a door can prevent wandering outside. It is only recently that I have observed this phenomenon with Kate. She is very cautious about stepping where there are contrasting dark and light surfaces. We have a dark blue rug with a white border in our bedroom. She is now very cautious when we enter the bedroom. She is careful to step over the border.

It is often very difficult to get her to see things I want her to notice. That comes up most frequently when we are eating. I always cut her food for her and usually put a bite on her fork and place it right in front of her on her plate. When I try to tell her where her fork is located, I almost always fail. Even when I pick it up and attempt to put it in her hand, she has a hard time understanding what I want her to do.

At lunch the other day, I noticed that she hadn’t eaten any of her rice, something that she usually likes. I mentioned it to her. She couldn’t see it, and none of my explanations helped. I finally picked up her hand and let her feel it.

It is very difficult to predict what she will be like at any moment. Quite a few times, I have mentioned this in connection with her sleep. Sometimes she sleeps or rests in bed far beyond her wake-up time. Sometimes she gets up very early. In itself, I don’t think of that as a problem except for me to adjust my daily routine. The relevance is that it is another sign of change in her condition.

Along with that, she experiences far more delusions than ever before. Sometimes I feel as though her day is one of delusions, and they are positive and negative. We can have great conversations when she is in a cheerful mood although I often don’t understand much or any of what she says.

Unfortunately, she has more negative delusions now. They usually involve things that seem minor to me but very important for her. The most typical is believing there are people in our home, and we are preparing to go out, or do something, with them. She is very concerned and often relieved when I tell her “it’s just the two of us” except when she doesn’t accept that or forgets moments after I tell her.

Another significant change is in our relationship. She is more likely to experience moments when she doesn’t recognize me at all. In some of those moments, she doesn’t immediately feel comfortable with me although she becomes more at ease in a very short time. There are times when she is experiencing anxiety and wants me but doesn’t recognize me. She will say, “Where is Richard?” or call to me by name as though I am in another room. Another interesting thing is that she sometimes refers to herself as “she” and to me as “he.” This can be confusing. At first, I was quick to ask who she was talking about. She can’t answer that, but I’ve learned through experience that “she” and “he” are “we.”

All of this is to say that our world has changed substantially. “Living with Alzheimer’s” is definitely more challenging these days. I am grateful for the good run we have had and that we continue to share so many “Happy Moments.”

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An Unusual Saturday

I never know when Kate will be ready to get up in the morning. More often than not, it’s between 11:00 and noon. That means having our lunch rather than breakfast after she is dressed. That happens often enough that I have my own morning plans. When she awakes earlier, I just shift gears. That’s what happened Saturday morning.

I had just finished in the bathroom and was going to the closet for my clothes when I heard Kate say, “Hello. <pause> Hello?” It was just before 7:00. I walked over to her bedside and said, “Hello, I’m glad to see you.” She said, “I’m so glad you are here.” She was very uneasy although not as frightened as she is sometimes. I asked her what was wrong, and she said, “I don’t know.” We spoke a few minutes, but she was unable to tell me what the problem was. Then she said, “I’ve got to get out of here.” I told her I would be glad to take her.

At that point, I figured that if I could get her up and dressed, she would begin to feel more at ease. Then she might be fine. That didn’t work. She got up easily, and we got to the bathroom. She refused to use the toilet or to brush her teeth. She just wanted to get out. I asked her to take off her night gown. She didn’t want to. I explained that if she wanted to put on her clothes, she needed to take it off. She still wanted to get out of the house and soon agreed. We were in the car a few minutes later. I turned on the second movement to the Brahms Violin concerto, and we didn’t talk at all. She settled down.

My intention was to drive around for 20-30 minutes and then return home for breakfast. On the way, I saw a new breakfast place near our house and thought it might be nice to try it out. I drove a little longer before asking Kate if she would like to stop someplace for breakfast. She said she would. I turned around and went back to the new restaurant. She was fine, even cheerful, and we had a good, but heavy breakfast. The ride and music had done what I had hoped.

We were home by 9:00. It was no surprise that Kate wanted to rest and did so for almost an hour while I took a walk. By that time, she was ready for the bathroom. Then we sat down on the sofa to look at one of her photo books. We hadn’t gotten far before she wanted to rest again.

She rested for over two hours and was asleep most of that time. About 1:15, I asked if I could take her to lunch. She wanted to rest a little longer. I tried several times over the next hour and a half. Still no luck. I had been playing very relaxing music for her and shifted gears to something more lively around 2:30.

That didn’t have any effect either; however, I was able to rouse her at 3:15. I decided to go out for an early dinner. We arrived at the restaurant at 4:15 and had a pleasant meal, and the evening went well. We hadn’t followed anything like a normal day, but everything was fine. It pays to be flexible.

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Saved by The Velveteen Rabbit (Again)

For the past year or so, especially since COVID-19, Kate and I followed a well-established after-dinner routine. I watched the evening news while she worked on her iPad. She gradually lost her ability to work her puzzles. That left a void that I tried to fill by watching less of the news and turning on YouTube videos of musical performances for her. She often liked to go to the bathroom, put on her night clothes before getting in bed to watch the videos.

Over the past week, she has balked on brushing her teeth, going to the bathroom, and getting ready for bed. The first time this happened I pushed her too far, and she let me know it. I needed to try a different approach. Past experience taught me that she often accepts things she doesn’t want to do if given a little time. On subsequent nights, I let her postpone these things until near the time for me to get in bed. That worked but I still had to push a little. Night before last I tried something else.

First, I asked if she wanted to get ready for bed. She didn’t. I told her that was fine and that I was going to take a shower. I hoped that she would be ready after that, but I found that she was already in bed wearing the clothes she had worn all day. I asked if she wanted to use the bathroom and put on her night gown. She said she would do it later.

I waited another ten minutes or so and tried again with similar results. Her resistance was increasing. It seemed like a good time for the “Rabbit,” The Velveteen Rabbit, that is. It has been helpful before, but each time I use it I feel I may be pressing my luck. I brought the book to the bedroom, got in bed and told Kate I was going to read something to her.

It often takes a while for her to become interested. That night she was fully engaged all the way through. When I finished, I said, “Isn’t that a nice story?” She sighed and agreed. Her mood had changed completely.

I thanked her for letting me read to her. She said, “I liked it.” Then I told her I needed to get ready for bed and asked if she would like to as well. She said, “Yes.” I helped her up and to the bathroom. She was cooperative as I helped her get out of her clothes and into her gown. The battle was over. It was a much better way to gain her cooperation than pushing her.

Last night she was also resistant. I gave her plenty of time and got her to bed without a problem; however, when I was about to go to bed, she had a delusion that involved other people in our house and disturbed her. Again, I brought The Velveteen Rabbit to bed and read it. She forgot all about her worries and fell asleep before I finished.

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Unpredictability: Part 2

Early last week, I wrote a post in which I talked about Kate’s unpredictability and illustrated with the changes in her sleeping pattern. By itself, that is not a serious problem. It’s something to which I can adapt; however, the source of this change concerns me. She is far more insecure than ever and is often uneasy about getting up. For a long time, she has experienced anxiety upon waking, but it seems more serious now. Previously, I was able to get her up without any problem. Then she would begin to feel better. Her response now is to withdraw. That makes it hard for me to help her.

The change that has bothered me most is the first signs of hostility. So far, that has involved occasions when I am helping her in the bathroom, dressing in the morning, and getting her night clothes on.

One of these occurred one evening last week. We had a good afternoon though a short one since she got up a little later than usual. As sometimes happens, it was almost 3:00 when we finished lunch. She rested about an hour or a little longer. She was in a good humor when she finished resting and expressed an interest in the house. That led me to take her on a tour, something we haven’t done lately. We didn’t get very far, but that was because of her interest. It took a long time for me to point out items of interest and listen to her own reactions.

She rested again before going out to dinner. She seemed fine at the restaurant. All was well until we got to the bedroom. Our normal routine is to go first to the bathroom to brush our teeth. When I mentioned it, she said, “I’ll do it later.” I brushed my teeth. Then I got her night gown and took it to her. That’s when the trouble began. She snatched the gown from my hand and said, “I’ll do it later.” I told her that would be fine and settled in to watch the evening news.

At 8:00, I asked if she was ready for bed. She wasn’t, I told her I was going to take my shower but was very careful not to say it in the same tone of voice she had used. I knew that would exacerbate the problem and hoped that when I got out of the shower, her mood would have changed. That wasn’t in the cards.

When I came out of the bathroom, she was looking intently at the bedspread and running her fingers over it as though she were writing. I didn’t say anything. In a few minutes, I asked if she would like to get ready for bed. She was ready, and I told her I would help her. I walked to her side of the bed, picked up the night gown and put it next to her. Then she said something I didn’t understand. All I picked up was that she saw other people in the room and for some reason wanted me to sign my name on her gown. I did exactly what she had been doing on the bedspread. I pretended to sign my name on the front of her gown. After that, she asked a couple of questions about the people in the room. I told her they were gone now.

When I picked up the gown, she said, “I’m not wearing this.” She was adamant about it and added, “Get me something else.” I took the gown and went to the closet and came back with another. I said, “Let me help you.” She gave me a stern look and said, “You can, but we’re going to do this together. You understand?” I said, “That’s fine. I like for us to work together as a team.”

She took the gown and tried to figure out how to put it on. Quickly, she realized that she needed my help. Soon after that, she was in bed. She was awake when I called it a day over an hour later. She seemed to have forgotten the whole incident. It was a typical close to our day. I told her I loved her. She said the same to me.

The next day, we had a similar experience. She was up even earlier and was very cheerful and talkative. As she did the day before, she expressed great interest in the house. We tool a brief tour of the dining room and living room. Then we came back to the family room where we looked at photo books until time for lunch. It was a very nice morning and afternoon. That evening we had a repeat of the night before. Since then, there have been a couple of other times when she was rather hostile.

Concurrent with this change is an increase in her delusions. They often involve people who are in the house. This results in her whispering so that “they” can’t hear her. She is very insistent on my speaking the same way. Other times, she is concerned about some kind of project on which she is working. I haven’t been able to figure out what it is, but she is very worried.

My impression is the hostility with me arises for two reasons. First, I think they come at moments when she has forgotten who I am and doesn’t trust me. Second, she is worried or frightened by her delusions.

Once again, I turned to The Velveteen Rabbit (TVR) as a way to calm her and ease her concern about me. It is amazing how effective that can be. A few nights ago, she was quite troubled when I got in bed. It involved an event on which she was working and was concerned about the people working with her. I tried to divert her attention to other things. That didn’t work. Then I read TVR to her. She was attentive and responded audibly from the beginning. That is not typical. It usually takes a while. She calmed quickly. At the end, I thanked her for letting me read to her and told her I liked the book. She said she liked it as well. She asked me a number of questions about it. I was surprised because the questions indicated that she had grasped at least some of the content.

This morning I saw a tweet that said, “The #dementia caregiver’s goal is to communicate “Let’s solve this together.” I try to emulate this approach, but I don’t seem to be doing so effectively at these moments. That is something I will have to work on.

Although many things are unpredictable, I am happy to report that the day virtually always ends on a positive note. I would say 99.9% of the time. When I get in bed, I say, “Thank you for another nice day. We always have nice days, don’t we?” She agrees, and I tell her I love her. Occasionally, she does not reciprocate by saying she loves me. That’s when she doesn’t remember that I’m her husband. On those occasions, she sometimes laughs. Regardless of what she says, she is both at ease and happy. I can accept that. It’s far better than butting heads.

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Living with Unpredictability: Part 1

Living with COVID-19 has brought about significant changes for everyone, and they keep coming. Kate and I are no exception; however, I am especially mindful that Kate’s Alzheimer’s is also undergoing changes that have upset the very nice routine we have had for years. I’m a person who likes consistency but “Living with Alzheimer’s” means increasing unpredictability. Her sleeping “pattern” is a good example.

Before Kate’s diagnosis, we tended to follow a regular schedule each day of the week although it changed periodically with other changes in our lives. That has been true true since the diagnosis as well.

Until about two years ago, her daily schedule meshed rather well with mine. I got up around 6:00. That gave me time to have breakfast, take my morning walk, and take care of email and household chores. She got up between 8:00 and 9:30. That is when we started going to Panera almost every morning and the café in Barnes & Noble in the afternoon. Add eating out for lunch and dinner, and we had a full day. Then we enjoyed a little time for relaxation at home before going to bed.

The first big change came about when she started sleeping later in the morning. We began to skip Panera and go straight to lunch. At the same time, she started resting shortly, sometimes immediately, after returning home from lunch. The consequence was that we also stopped going to Barnes & Noble in the afternoon. We still ate out for dinner, so our schedule continued to maintain a significant amount of stimulation for both of us. In addition, when she wasn’t resting at home, she worked jigsaw puzzles on her iPad. That kept her occupied and her brain focused on a pleasurable task.

We began to move away from this routine early this year when she twice remained in bed until well past lunch. The pandemic brought about more change. Eating out came to an abrupt halt, and Kate lost the ability to work her puzzles on the iPad. The result was a drastic reduction in outside stimulation. It has been especially tough for Kate. That, in turn, has required more of my time to keep her entertained. Despite my efforts, our lives have become more sedentary.

Kate adjusted by resting more than she did previously. That may be what is behind the variability in the time she awakes in the morning. Of course, it is also possible that it relates more directly to changes in the brain as a outgrowth of Alzheimer’s.

At first, I suspected that her staying in bed so long related to fear or anxiety related to her confusion upon waking or to frightful delusions. On at least two occasions, I have said, “You look frightened. Are you?” In those instances, she said she was but didn’t know the cause.

More recently, she hasn’t appeared to be frightened, simply tired. That was true two times last week. The first time I was successful in getting her up. The second time, I was not, at least until after 1:30. I first tried to wake her at 11:00. She woke up and seemed in good humor; however, when I suggested that she get up for lunch, she balked. I let her rest another twenty minutes and tried again. Still no luck. I tried two other times and finally gave up.

I had planned for us to go out for lunch but shifted gears and had lunch delivered to the house. At 1:30, I tried again, this time with success. The only problem I had was that she didn’t recognize me as her husband. Usually that doesn’t make a difference. This time she wasn’t as comfortable with my help in the bathroom or in helping her dress. She ate her lunch. Then she had a hair appointment.

As in the past, she sometimes gets up early. Last Friday, that was 6:25. This occurs frequently enough that I am keeping more breakfast food for her. Although her early starts interrupt my daily routine, I adjust easily to that. I enjoy the time with her. In addition, I know she will want to rest before lunch. That gives me a chance to take my morning walk. Not only that, but she normally wakes in time for us to have lunch on those days we have a sitter.

What is next? I’m not sure. Although the unpredictability of her getting up represents a significant change in our life style, it is far from being a serious problem. I know we will have bigger adjustments in the future. I expect that she may eventually sleep for extended periods during the day. I don’t look forward to that. I would rather live with the current unpredictability.

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Sundowning?

One of the common symptoms associated with Alzheimer’s and other dementias is sundowning or sundowner’s syndrome. Until this week, I haven’t noticed this with Kate. The classic signs usually involve confusion and anxiety that occurs around sunset or early evening. She’s experienced a lot of confusion and some anxiety, but it has not been typically associated with the evening. In fact, afternoons and evenings have been the most predictably good parts of her day.

Kate’s behavior the past two nights leads me to suspect sundowning might be entering our lives. Thursday she was awake earlier than usual, around 8:30 as I recall. We had enough time for her to have breakfast and rest an hour or so before going for lunch around 11:30.

The balance of the day went well. She rested some, and we looked through one of her photo books. We had an early and pleasant dinner at Casa Bella. The pleasantry evaporated when we pulled into the garage at home. When I opened her door, she looked frightened and refused to get out of the car. She told me to get in.

I complied, and we chatted for a few minutes. She thought there were people in our house and wanted to avoid seeing them. I mentioned that it was our house, and we hadn’t invited anyone. We chatted a few minutes. Then she said, “Well, what do you want to do?” I said, “I think we should go inside and get ready for bed.” She said, “Okay,” and we went inside.

Everything was fine until near the time that I got in bed. She was frightened again and mentioned something about “them.” That is not unique. She frequently believes there are others in the house or on the way. I went in another direction and said, “Why don’t I come to bed now. I’d like to read something to you.” I got The Velveteen Rabbit and hopped into bed with her.

I’ve been reading the book to her for several months now, and she has never given me any sign that she recognizes it or has ever read it before. Her immediate response varies. Sometimes she is reluctant to go along with my suggestion that we read it. Other times, she seems to like the idea. In those cases, I get the feeling she just wants the comfort of our engaging in an activity together. That’s the way it was that night.

She didn’t make her normal audible responses to specific passages that catch her attention, but she did begin to relax. By the time we reached the end of the book, she was at ease. I thanked her for letting me read to her and told her I loved her. She said, “Me, too.” I turned out the light, and we were off to sleep.

Yesterday, she was wide awake when I got out of bed. She said wanted to get up. I suggested that she let me get up first and dress and then help her. She agreed. I thought she would be asleep by that time, but she surprised me. I got her up at 6:50, and fixed her breakfast. We had a good time. She was talkative and always enjoys her cheese toast. When she finished, she wanted more and enjoyed it just as much.

After breakfast, we went to the family room and looked at one of her family photo books until she wanted to rest. That was about 9:00. I had a Zoom meeting with my Men’s Coffee Club at 9:30. We were through at 11:00. I thought that would give us plenty of time to have lunch before I had another Zoom meeting with a United Way committee.

That idea went by the wayside when I discovered that Kate had gotten up from her rest just before I finished with my men’s group. She was looking around the house. When I mentioned lunch, she wasn’t interested. I decided to have lunch delivered. Before it arrived, she was resting again. Time was also running close to my noon meeting. I decided to eat after the meeting.

That turned out to be a good idea. Kate was ready to eat when the meeting ended. We were about to sit down when Mary, our Friday sitter, arrived. She had picked up a lunch for herself, and the three of us ate together. I have found that my departure is much smoother when I don’t have to leave immediately after the sitter gets here. That worked especially well yesterday. Kate was talkative, but it was difficult to understand what she was saying. When I returned, they were having a good time looking at one of Kate’s photo books. Mary said they had talked and looked at books the whole time I was gone.

We picked up a takeout meal for dinner. Before leaving, Kate wanted to go home. I told her we could pick up our dinner and take it home to eat. We enjoyed our meal, and I thought we would be off to the bedroom to get ready for the night. Kate had other ideas. She wanted me to take her to her home, not mine. On the way home, she repeated that she wanted me to take her to “her” home. I felt the need to prepare her that it was my home. I told her it was late and that it was best that she stay at my home and that I could take her to her home “in the morning.” She said the clothes she would need that night were at her home. I told her I had clothes for her. She said, “Well, I’d better call my mother.” A moment later, she said, “She’s not going to like this.” I assured her it would be all right. She was hesitant, but she agreed.

Once inside, she was still uneasy, but she let me help her in the bathroom and getting dressed. I put on some music that I thought she would like and helped her into bed. Then I took my shower. When I got out, I think she was asleep. I know that she didn’t say anything until I got in bed. Then it was just a soft chuckle. She sometimes does this to acknowledge that she is awake. On the other hand, it could have been that she was having a dream.

Was this a case of sundowning? I don’t know. She does seem to have had more delusions in the past few days. I have another thought. Following the guidance of Kate’s doctor, I have gradually eliminated her Aricept  (donepezil). She took the last tablet on Tuesday. Is this a symptom of withdrawal? Again, I don’t know. It could be that the experiences of the past two nights are not sundowning or signs of withdrawal. It could also be just another stage in the progression of her Alzheimer’s.

No matter how much a caregiver knows, one never knows it all. But that doesn’t keep us from trying. I think I’ll go back to her Aricept  tonight and follow the same withdrawal schedule we have for the past two weeks.

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Sleep and Rest

Long ago I learned that people with dementia reach a point at which they sleep more. I’ve been mindful that would happen, but I wasn’t prepared for the way that is happening with Kate. I just thought she would simply start going to bed earlier and getting up later.

I’ve not been able to identify a consistent pattern for her. Until two years ago, she went to bed between 8:00 and 9:00 and got up early enough for us to get to Panera for a blueberry muffin between 9:00 and 10:00. In addition, she would rest a while after lunch. That would give us time to spend an hour or more at the café at Barnes & Noble before going to dinner.

When she started sleeping as late as 11:00 or 11:30, we stopped going to Panera. It was time for lunch. Along with that, our afternoons changed. She wanted to rest immediately after lunch. That would last as long as two or three hours which took up most of the afternoon. That put an end to our visits to Barnes & Noble.

This pattern changed with the arrival of COVID-19. Kate was losing her ability to work jigsaw puzzles on her iPad long before then, but she lost it completely after we began sheltering. That was her last self-initiated activity and had a significant impact on her sleep and rest. As recently as a year ago, she could easily spend 6-8 hours a day working her puzzles. That lessened during the day because she was either sleeping or resting, but she continued to work on her iPad for an hour or more each night. That meant she got to bed between 8:00 and 9:00.

Without her puzzles, she had nothing to do after dinner. I tried to interest her in looking at her family photo books, but she really needs someone to identify all the people. That was a time when I would try to catch a little of the evening news and get my shower. The result was her going to bed shortly after dinner. Since we have started eating out some evenings, that means she gets to bed around 7:30 although she is rarely asleep when I get in bed.

Several times a few months ago, she refused to get up when I tried to wake her. Before that, she wasn’t always eager to get up, but she never refused. Since that first time, there have been several other times like that. One day she remained in bed until 5:15 in the afternoon. Then she began to wake up early on a few mornings. I am now used to her getting up early almost once a week, sometimes twice.

Until recently, she has always gotten up rather quickly in the afternoon. The exceptions occurred in the last week or ten days. The first time happened when I wanted her to get up for dinner. After a couple of efforts within 15-20 minutes, I let her rest another hour. Then she got up agreeably.

Thursday afternoon last week we had hair appointments at 3:30. She was resting, not asleep, when the sitter arrived for me to meet a friend for coffee. I returned just a few minutes before we needed to leave. She was still resting. I told her it was time for our hair appointments and fully expected her to get up easily. I was wrong. She was just like she has been in the morning. She was very relaxed but also very firm in saying she wasn’t going. I called the stylist and told her I was having trouble getting Kate up and that I might have to cancel. I gave her another ten minutes and tried again. I could see it was no use and rescheduled our appointments.

I stayed in the family room with her while she rested. An hour later she was ready to get up. She was in a good humor. I feel sure she didn’t even remember that I had tried to get her up earlier. It wasn’t long before we left for dinner at Casa Bella and had a good evening. It was as though nothing had happened at all. We both felt good.

Saturday morning she was up very early. I had just gotten up and walked into the bathroom when I heard her moving. She had gotten out of bed. I helped her to the bathroom and took advantage of the early morning and confusion to give her a shower. When we finished, I helped her dress. She wanted to lie down on the bed. Because it was so early, I was happy to tell her that would be all right. That gave me time to comb my hair, shave, and dress. She remained in bed until time for lunch.

Sunday morning, she was up before 9:00. She was unusually cheerful at breakfast. Afterwards, we spent about forty-five minutes looking at one of her family photo books. It didn’t surprise me when she got tired and rested over an hour before lunch.

She awoke early again this morning, about 7:30. I went to her and found that she seemed wide awake and in a good mood. When I told her it looked like she was ready to get up, she said, “I don’t know.” We talked a few minutes. I told her I would be happy to help her get up and dressed. She said she wanted to rest a little more. It’s my day for Rotary, and I like to have her ready for the sitter who comes at noon. We had plenty of time, so I let her continue to rest. I don’t plan to get her up until 11:00. If she wants to stay in bed, I’ll let the sitter handle it.

The only thing that’s clear is that Kate hasn’t settled into a consistent sleep pattern. I’m not sure whether the present irregularity is something that is long-lasting, or she will gravitate to something else. As Kate herself is prone to say, “We’ll see.”