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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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Happy Day

When people ask about Kate, I often say that she is now at Stage 7 in her Alzheimer’s journey. I sometimes add that it is the last stage that can last for years. I feel sure my reply conveys the seriousness of this phase of the disease. For that reason, I usually add that it doesn’t mean that we don’t continue to have moments of joy. We do, and one of the interesting things to me is how often those moments are intertwined with the common symptoms of this stage. I am grateful because her life is now filled with more delusions, hallucinations, and confusion than she has experienced before. Yesterday is a good example.

Shortly after 8:00, I heard her say something and went back to the bedroom. When I reached her, she seemed wide awake but confused. That may seem a strange combination. What I mean is that she looked and sounded fully awake, but her confusion was obvious as I tried to get her up and into the bathroom.

I told her I was glad to see her and asked if she was ready to get up. She was but said, “What should I do?” I suggested she first move her feet and legs to the side of the bed. She didn’t understand what I meant, so I gently pushed them to the side. She said, “What now?” I told her to hold my right hand while I lifted her with my left. Some mornings this is difficult. She seems to be dead weight. This time she pulled my right hand, and I was able to lift her to a sitting position. It is not unusual for her to scream when I do this. She didn’t this time.

She was very uneasy getting to her feet, but we got to the bathroom without a problem. When I told her to take a seat on the toilet, she was confused and didn’t want to. That is pretty common, but this time she wanted to know why she should sit on the toilet. I gave a very simplified explanation that she couldn’t understand. Then I told her we could skip it. After I said that, she agreed to sit down. Afterwards, we washed her hands, and I gave her a toothbrush to brush her teeth. She didn’t understand what she was to do with it. I helped her get started. Then we went back to the bedroom to dress. That went smoothly.

For a very long time, Kate has responded with great interest when she sees the plants and flowers in our family room, on our patio, and the back yard. That has been less frequent in the past few weeks. It was back yesterday, and we took a few minutes to enjoy them together.

Once she was seated at the kitchen table, I gave her a glass of apple juice and her morning meds. She loved the juice (which she refers to as water) and took her pills without a protest. She actually seemed pleased I had given them to her.

The best was yet to come. I fixed her a slice of cheese toast. Kate didn’t remember having eaten it before and responded with enthusiasm. She ate it more quickly than usual, and I fixed another one. She was quite talkative while eating and after. (I may have noted in an earlier post that she seems to feel especially comfortable at the kitchen table and often wants to linger long after she has eaten. I think she likes the fact that the table is located beside a large window overlooking our neighbor’s front yard and that of another neighbor across the street. Two different sitters have commented on her wanting to stay at the table for as long as an hour after eating.)

I joined her at the table right after fixing her cheese toast. She asked my name. When I told her, she gave me her name, something she often doesn’t remember. It was one of many times during the day she didn’t remember my name or our relationship. Then she began a lengthy conversation. I wish I could tell you what she said, but her speech was so garbled that I couldn’t make any sense of it. Everything she said emanated from a delusion. I do know that she mentioned her mother and later in the conversation made references to other people (“she,” “he,” “they”) and assumed that I knew them. It was light-hearted chatter, and she laughed a lot over 30-45 minutes. I loved seeing her enjoy herself.

During all this, an album of very relaxing music was playing. “Clair de lune” caught her attention. She stopped talking and said, “Listen.” For the balance of that piece and into the next, she closed her eyes and put her hands together as though she were praying. This is not the first time she has done this. I always find it touching. The day was off to a good start. It was a very “Happy Moment” for both of us.

We finally adjourned to the family room where she wanted to rest. I took that opportunity to take my morning walk (inside the house for those of you who are new to this blog). I hadn’t walked ten minutes before she was sitting up. Then we spent a short time looking at one of her photo books before getting a takeout meal for lunch.

The sitter arrived just as we were finishing lunch. I got up from the table to get ready to leave, and the sitter took my place. It was a very natural transition. Kate was perfectly happy with Cindy as she has been since her first few visits . That makes me feel much better when Ieave.

When I returned, they were seated on the sofa looking at a photo book and having a grand time. Kate was sorry to see her go. Their relationship is everything I could have wanted and more.

The rest of the evening went well. We had a pleasant dinner with a takeout meal at home and encountered no challenges getting ready for bed. Kate had not rested at all during the day. That’s rare. As a result, she went to sleep rather quickly but awoke briefly when I got in bed. She was still happy, and so was I.

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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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One More Surprise for the Day

Not long after my previous post, I checked on Kate. She was awake and said she was ready to get up. I’ve learned not to rush her and was very careful not to do so. When it came to actually getting up, she was very hesitant despite my precaution. This has happened several times over the past week. Once on her feet, she began to talk as though people were in the house or would be. She assumed I knew what she was talking about. This is also something that is not particularly unusual.

On the way to the bathroom she continued to talk. I have no idea what she was talking about. Her words were a mixture of words I understood with those that were garbled. She was having hallucinations about people and things in the room. She was very uneasy about going into the bathroom. It took me a while to coax her.

While on the toilet, she got some toilet paper in her hand and looked at it. She asked me if I had one too. Then she said something that made me think she thought the toilet paper was a man. It was a challenge to talk with her because I didn’t understand much of what she said.

She said she didn’t know what to do. I told her to get up from the toilet. My plan was to give her a shower. I have found that it is easier to get her in the shower if I don’t inform her until just after she gets up from the toilet. That didn’t work this time. She didn’t want to take off her gown. I tried to explain that she would need to take it off for me to get her clean. She continued to resist.

I decided the shower would make things worse. We brushed her teeth. She was still agitated. I felt it would be better to let her rest a while. Perhaps, she would be fine after that.

I went back one or two other times. She seemed to be over whatever had gotten to her; however she still didn’t want to get up. I bought a new bed last week. It was a little too high for Kate, and the mattress company was sending out someone to lower it for me. It was almost 2:30 when I received the call that they were on the way. That was when I felt the need to get her up. She responded well and was fine after that.

Last week, I bought her a robotic cat that meows, purrs, raises its head, and blinks its eyes. For almost an hour she was entertained by her cat. Then we had a Zoom call with our son. When we finished, it was time for dinner. We went to Andriana’s and had a very nice meal. She was rather confused when we got home. She asked where we were. When I told her, she wasn’t happy but didn’t say why. Fortunately, I had no trouble getting her ready for bed. She is resting peacefully though not asleep. It’s been a full day. I wonder what tomorrow holds.

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Another First and, Hopefully, the Last

I had just gotten up and was in the bathroom brushing my teeth when I heard Kate scream. I was close, so I got there in a flash. She had gotten out of bed and fallen between a chair and the bedside table. She was frightened and hadn’t yet tried to get up. I first checked to make sure she wasn’t injured. She didn’t have any cuts or scratches. I asked if she was hurting. She wasn’t.

Having decided she was all right physically, I helped her into a sitting position before considering the best way to get her up. My first thought was to lift her from behind with my arms under her shoulders. The moment I put my arms in place, she yelled at me to stop. I had another idea. She was sitting by a chair, and I thought I might be able to get her on her knees with her arms in the seat of the chair and then help her up. She wasn’t able to understand or follow my instructions. That led me to think of getting her on her hands and knees. Then I might be able to lift her. She couldn’t understand that either even though I demonstrated several times.

I tried to lift her. She was frightened and wouldn’t cooperate with me. I have known others who faced this situation. They had called the fire department for help. I called 911 and explained the situation. I specifically mentioned the fire department, but the person I spoke with said they had to call EMS. I told her that was fine, but there was no need for a siren.

In less than five minutes, the doorbell rang. It turned out the EMS crew was in the neighborhood when they got the call. I briefed the young woman, Heather, and man, Kevin, on Kate’s Alzheimer’s. I explained that she can’t follow explanations and that she appeared to have suffered no physical injuries. In took almost no time for them to get her up and back in bed. Kevin got behind her with his arms under her shoulders while Heather positioned Kate’s legs. She responded the way she did when I tried; however, he moved more quickly than I did. She was on her feet in no time.

They asked her if she was all right. She said she was. Then she looked over and saw me. She apparently did not remember that I had been there at all. She immediately looked relieved and reached out to hug me. Kevin helped her into bed. She looked up at the two of them standing by the bed and expressed her appreciation. That was a few minutes before 8:00. She is still in bed at 11:30. All is well.

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Another Good Day with the New Sitter

In a previous update about Cindy, Kate’s new sitter, I mentioned how happy I was about the way she and Kate have connected. While it may be too early to think this is a perfect relationship, I continue to be impressed. They had another good day on Wednesday.

When Cindy arrived, Kate was delighted to see her. That made me feel good. I didn’t leave right away. When I did, Kate gave me a sad look and said, “Your leaving?” I explained that I had some errands to run and that Cindy would be with her. Cindy immediately engaged her in conversation, and I slipped away.

When I returned, the two of them were seated on the sofa looking at one of her photo books. Kate asked me to join them, and I did. After a few minutes, Cindy said she had to take care of dinner for her husband. Kate seemed just as disappointed to see her leave as she had been when I left earlier. She reached out her arms and gave Cindy a hug and said, “Will you be coming back?” She was pleased to know that she will be.

Cindy has quickly become a bright spot in our lives. When talking with Kate, I have referred to all of the sitters as your “friend” rather than “sitter” or “caregiver.” Cindy, however, is the first to come close to being one. I couldn’t be happier. Kate has needed this kind of relationship from the beginning.

The icing on the cake is my recent use of a friend who can fill in occasionally. She will help me out tomorrow and Monday, two days when our regulars are unavailable. As I may have said before, we are in better shape than ever in terms of in-home care. That’s good because there are many other things to which I need to attend.

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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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Follow-Up to Previous Post on In-Home Care

I closed the previous post with an expression of optimism regarding our new Monday/Wednesday sitter. That was right after both of her regular visits last week. Thursday, I got a call from the agency that our Friday sitter couldn’t make it and that Cindy, the M/W sitter, was able to come. I thought that was good since that would mean Kate would have three consecutive visits her. Although she can’t remember her sitters by name, she does sense some familiarity over time.

That visit went especially well. When Kate heard her say goodbye, she looked sad and said, “You have to go?” Cindy told her she would be back next week. Then Kate said, “I love you.” I usually refer to all the sitters as “friends” when I mention them to Kate. I am hopeful that Cindy may truly be one.