Welcome to Living With Alzheimer’s

January 1, 2020

This site consists of a journal I started on January 21, 2011. That was the date on which my wife, Kate, was diagnosed with Alzheimer’s disease. It is an account of our lives since that time and includes the symptoms Kate has displayed as well as how we have adapted. You will also learn about our frustrations and problems.

At the time of this site’s launch on January 21, 2018, I uploaded almost  700 journal entries. Since then, I have added 1000 more. I continue to write new posts, but  I don’t have a regular schedule. I write them as new things occur. Sometimes I may not write anything for a day or so. Other days I may make two or three entries.

What may surprise you is how much we have been able to enjoy life and each other even as we experience the toughest challenges of this disease. In that respect, we have been more fortunate than most couples who travel this road. The past year Kate has declined significantly and is now in Stage 7 of the 7-Stage Model of the Progression of Alzheimer’s, but our relationship remains strong. She expresses more irritability now, but she is also much more dependent and very appreciative of what I do for her. Yesterday, she thanked me for taking care of her, and said, “I don’t know how you do it.”  None of us knows what life will be like a year from now, but I plan for us to enjoy ourselves as much as we can for as long we can. That seems to have worked in the past.

Thanks for your visit.

Richard Creighton                                                                                                 @LivingWthAlz

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.

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.

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.

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.

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.

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.

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.

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.

An Update on In-Home Care

Five weeks ago I reported that the stability of my three-year arrangement of sitters for Kate had suddenly come to an end. I lost the person who came on Monday, and the person who came on Wednesday and Friday had some changes in her life and dropped Wednesday.

On top of that COVID-19 has made it hard for the agency to find replacements. That led me to contact someone we had met at our music nights at Casa Bella. She started a business providing services for seniors about a year ago. I gave her a call, and she came to my rescue on a day when I had an ophthalmologist’s appointment.

Wouldn’t you know it was also a day when Kate didn’t want to get up. As it approached time for the sitter’s arrival, I gave up and decided to let her sleep/rest. This was a time I hoped she would sleep be in bed until I returned. Our friend isn’t really in the business of providing personal care, and I didn’t want to put her in the position of getting Kate to the bathroom and dressing her. Since I knew that Kate would not remember her, I was also concerned about her waking up and not knowing who this person was.

As it turned out, Kate wanted to get up before I came home. I never got the story from our friend, but she had taken care of everything. They were chatting happily when I arrived. I regretted that both of them had been put in this spot, but they seemed to have gotten along fine. Since then, I have used the friend on two or three other occasions. It is especially nice that she does not require a minimum time. Twice she has been here an hour and a half. The agency has a four-hour minimum.

Next, the Monday/Wednesday sitter had to leave her position as a result of a back injury; however, we had a stroke of good fortune. One of the agency’s regulars had an opening for those days. Coincidentally, I discovered that I know her husband. He is an ex-banker turned farmer. For several years, he has dropped by our office in a truck loaded with fresh produce. I have also encountered him at the American Red Cross. He is one of, if not, the leading donor in our area. He is nearing his 1000th donation of blood or platelets.

The best news is that she is the best sitter we have had since I first brought in help three years ago. Having said that, I did run into one issue that seems to have been resolved. I thought she was great because she took more initiative to engage Kate in conversation and other activities. The only problem was that she seemed to move too quickly for Kate. Each of the first two times she was here, it appeared they had gotten along fine. When the sitter left, however, Kate’s eyes rolled. One of those times, she said, “What’s going on here?” On another visit, the sitter brought her iPad to play some children’s audiobooks for Kate. I suspected that was going to be overwhelming, and it was.

When I returned from another visit, Kate was asleep on the sofa. That gave me an opportunity to talk with the sitter. I told her I was very pleased that she was now our regular Monday/Wednesday sitter. Then I asked if she had heard of The Horse Whisperer? She hadn’t, and I went on to explain his approach to breaking horses by very gradually gaining their trust. She confessed that she was a little hyper but would try to approach Kate more gently to establish her relationship.

She has been back twice since then, and the visits have gone very well. Kate had rested a short time during her last visit. The rest of the time they had looked at photo books and read stories. I took it as a good sign that Kate didn’t express any concern when I left, nor did she seem to be relieved when I returned home.

I am optimistic about the future with her. Her hyper nature has a positive side. She has taken more initiative to help me with the laundry, replace bed sheets, and looks for other things to lighten my load. She also has a touch of OCD. I notice that in the way she folds clothes and makes up the bed. If she can stick with us, our in-home care will be the best ever.

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.