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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.”

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A Restaurant Experience The Other Night

Although Kate sometimes speaks harshly to me, it is far from an everyday occurrence. She has remained gentle and kind-hearted. Not only that, but she has rarely said anything in public that someone else might take as rude or inappropriate though on a couple of occasions, she has said something to me that surprised the people we were with. Recently, she spoke harshly to the woman who was shampooing her hair. This wasn’t anything serious. She was just frightened by the splashing water. I don’t think the hair dresser thought a thing about it.

A few nights ago at a restaurant, we had a different kind of experience. We had had a nice day. She had been in a good humor, and we had enjoyed our time together at lunch and at home where we toured the house, looked at some of her photo books, and listened to music. She had been resting when I told her I thought it was time for us to go to dinner. She got up easily and wanted to go to the bathroom. As we were about to leave, she looked like she was troubled though she was quiet in the car.

She was very uneasy walking from the car to the restaurant. This is something that is becoming common. Her vision fools her into thinking the pavement is much more uneven than it is, and she is quite afraid of falling. Once we got to the table nothing seemed right to her. She thought it was taking a long time to get our drinks and place our order though it hadn’t.

She was confused and not especially interested in anything she was served. I tried to find something she would like but wasn’t successful. Our server was someone who has served us a long time, but Kate responded as though she had never met her. She wasn’t rude, but she didn’t express any special pleasure in seeing her. That was a surprise. At one point, she was bothered by something in her teeth. The server asked her about it, and she opened her mouth to show her much the way a small child would do. The server asked me if they were her real teeth. Before I could answer, Kate said she had one tooth that wasn’t hers. I was stunned. It was one she got long before I knew her. We’ve replaced it one time, but that was probably twenty or more years ago. I haven’t heard her say anything about since that time, and I had almost forgotten. How in the world she remembered I’ll never know.

I wish I could remember all of the things that happened. I know it was very clear to the server that she was not the same Kate she had seen before..

Her mood didn’t change as we walked to the car. When I opened the car door for her, I started to take off her mask as I usually do. She was angry and snapped at me. I was surprised. She is always eager to take it off and often does so herself before we get to the car. I apologized. After getting in the car she was fine. She did, however, wear the mask all the way home and didn’t take it off until we were in the house. What brought on the episode at the restaurant and why she changed so quickly once in the car remains a mystery.

I haven’t observed anything like it since then although I have noticed an increase in her uneasiness walking to and from the car. That is especially true when going to a restaurant or to her hair dressers. I am sure the same would be true for other places if we were going other places. I think this is largely a result of her poor eyesight. On the other hand, I notice she is more distirbed or frightened by things she hadn’t expected. Noise is one of those. She seems to feel less and less comfortable in a world that seems stranger and stranger to her.

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Issues with In-Home Care

It was almost exactly two years ago that I first engaged sitters for Kate. Except for a handful of exceptions, the schedule has remained the same – four hours a day Monday, Wednesday, and Friday afternoon. We’ve been fortunate to have few changes among the sitters themselves. One of them has been with us the entire time except for the first week or two. That has been especially helpful since, until recently, she came two afternoons a week. We’ve had three or four sitters for Monday, but two of them were with us less than a month. I believe the continuity has been beneficial for Kate.

The past few months have been different. We lost our Monday sitter the first of June. Fortunately, the person who replaced her was a woman who had been with us forty weeks during our first year and quit to take care of her own health issues. I was glad to have her back.

Then our Wednesday/Friday sitter gave up her Wednesdays. She has been in great demand by the agency. That has been especially true during the pandemic. She was moving into a new house with her mother. She needed a break, and I understood. It turned out the Monday sitter was able to take the Wednesday slot. That has worked well.

After that, I had my own mini-crisis with respect to my blood pressure that was no doubt related to the increasing stress of caring for Kate. That led me to make a few changes. One of those was to add a sitter for Thursday. At first, it looked like that might be a problem. When I talked with the agency, I learned that they have been impacted by the pandemic. They don’t have as many people who are willing to accept assignments, and it is more difficult to recruit new ones. As it turned out, they were to arrange for our Monday/Wednesday sitter to add Thursday as well.

Over the weekend, the agency called to say that she had injured her back and would not be able to come on Monday. They called back that morning and told me they could not locate anyone else who could. Unfortunately, that was my day for Rotary, so I missed that.

It was also a day when I had a 2:00 appointment with my ophthalmologist. That meant I would have to take Kate or find someone else to stay with her. At first, I thought I might take her with me. I have done that on other occasions; however, she is bothered by wearing a mask. It is a challenge for me to get her to wear one from our car to a restaurant. Knowing that we might be there over an hour, I preferred to leave her home.

That prompted me to call someone we had met through our music nights at Casa Bella. Last fall, she started a business providing services to seniors. I know someone who uses her as a driver, but she does a wide variety of other things. I put in a call to her. She was available and came to my rescue.

I know that Kate didn’t remember her, but she must have seemed familiar. We sat together many times over the past five years. At any rate, they got along well, and Kate didn’t object when I left. She was resting when I got home two hours later, but according to my friend, things had gone well. I am glad I called her. She is an appealing person in whom I have confidence. If I encounter another situation like this, I won’t hesitate to call her.

The question now is “Will the sitter who injured her back be able to return soon?” I have no idea nor does the agency. Yesterday afternoon, I received another call from the agency saying they had been unable to locate anyone for today or tomorrow and are working on a replacement for next Monday. In the meantime, I placed a call to my friend who is available if the agency is unsuccessful. I have a dental appointment a week from today and told the agency about it. I plan to call my friend today to see if she could be a backup for that day as well.

Suddenly, my rather stable in-home care arrangement is no longer stable.

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Feeling Needy and Appreciative

I am sure I am not alone among caregivers in wondering how Kate perceives her own situation. I make my own interpretations based on what she says and does, but I would really like to know what she thinks and knows. One thing I do know is that she recognizes that something is wrong with her, and it often bothers her. As on other occasions, she made that very clear yesterday.

It was a day when she appeared unusually needy. All day long, she seemed to want to be with me, holding my hand and asking me what she should do about everything. It is not unusual for her to be dependent. It was simply a day of her feeling especially needy. Except for being uneasy when walking, she didn’t appear to be particularly disturbed. Even when I left her with the sitter, she seemed to accept my departure although she was disappointed and said, “Don’t stay too long.”

At dinner, she expressed her appreciation of my care for her. We were holding hands across the table. She said, “I can’t live without you.” With a concerned look on her face, she said, “I don’t know how I would get along if something happened to you.” It was a moment when I believe our thoughts were in sync. It was one of our tender moments when we convey as much or more to each other through our non-verbal expressions as the words themselves. That isn’t everything I would like to know from her, but it is very powerful. It reinforces my commitment to give her the best care I can.