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Busy Days

I have felt rather busy the past three days. Most of that has involved Kate directly. Two of those days she was up early for breakfast. She rested periodically during the day, but she required more attention during those times she was up. We’ve had a full range of experiences including highs and lows.

One of the highs involves another long conversation during dinner two nights ago. Again, it was one in which I was only a listener/facilitator. It started when she asked “the name of this place.” I told her it was a house and that it had an address but not a name. Then she asked my name. The manner in which she asked told me that while she was comfortable with me, she didn’t recognize me as her husband.

She made a few comments about our home. Then I asked her to tell me about her mother. She took a moment to think. It was obvious that she couldn’t remember the information that would help her answer my question, but she did say that her mother liked to help people. That is something that she often says.

That initiated a long conversation about how people treat one another. It was a rambling conversation, much of which I didn’t understand. She frequently searched for words. What I felt was most significant about it was that she was enjoying heerself. That’s why I would consider this a Happy Moment.

The high point of that day occurred after she had been in bed for over two hours. I had just finished my shower. When I walked into the bedroom, I found her standing in front of the TV watching a YouTube video of a duet from La Boheme sung by Jonas Kaufman and Anna Netrebko. She was emotionally engaged. It’s a favorite of mine, and I stood there watching with her until the end of the duet. Although Kate and I have always enjoyed music together, her preferences have been for musical theater and less for classical, especially operatic performances. Since her diagnosis and our binging on music, her musical tastes have expanded tremendously. It has been especially pleasing to share the joy of music with her. Thus, this moment standing in front of the TV in the dark and in our night clothes was a special moment.

That wasn’t the end. The next video to play was the second movement of Rachmaninov’s Piano Concerto No. 2 played by a woman I didn’t know. That movement is another favorite of mine, one that I have included in my “soothing music playlist” I use with Kate. By this time, Kate wanted to sit down. We took a seat on the bench at the end of our bed to watch the performance. The audio alone is enchanting, but the addition of the video of the pianist and the conductor and orchestra added immensely to the intensity of feeling. When the piece ended, I turned off the TV, and we went to bed. It was a beautiful way to end the day.

We have also had some trying moments. I’m thinking specifically of getting ready for bed. Before Kate gave up her iPad, she used to work jigsaw puzzles from the time we got home from dinner until getting ready for bed. At some point, she would get tired or I would tell her it was getting to be bedtime. Then I would help her get ready. Occasionally, she was still wrapped up in her iPad and didn’t want to stop.

The loss of that activity has left a void in her schedule. She has gravitated to getting in bed shortly after dinner and, since Covid-19, after our nightly drive around town. That means she gets in bed as early as 7:15. She is rarely asleep before I get in bed between 9:30 and 10:00.

That has gone rather smoothly until the past week or two. She is still eager to get in bed, but she doesn’t want to take off the clothes she has worn all day. Most days there is no problem. When there is, I have to carefully coax her, and I am not always successful. In those cases, she can be adamant about not cooperating. We’ve had trouble the past two nights. I hope this is not going to become a serious problem.

There is one other bedtime issue. Within the past couple of weeks, she has been insistent on my running my fingers between her toes, pulling strands of her hair, and also running my hands across her body. She seems to be concerned that there are “things” between her toes or on her body that she wants removed before going to bed. The problem for me is that it often comes at a time when I am beginning to wind down. I have been complying although she doesn’t think I always take it as seriously as she thinks I should. She will demonstrate how to do it and then ask me to try again.

I know these are minor issues, and I hope they stay that way.

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A Lengthy Conversation About a Delusion

Kate is not generally a big talker, but, periodically, she surprises me. I don’t always know what prompts her talkativeness, but I do know that it often involves a delusion of some type. She had one of those yesterday. As so often happens, she had been resting on the sofa in the family room. I was seated across from her. She rested over an hour before she opened her eyes. When she saw me, she said, “You can help me.” I asked what I could do, and she said, “Come over here.” When I did, she told me to “go over there.” I walked across the room and turned around. Then she said, “Come back over here.” I walked very obediently to her again. This time she told me to take a seat and pointed to the table in front of the sofa. I sat down and asked how I could help her. That opened the door to a conversation that lasted over an hour.

At first, it was very hard to make sense of what she was saying. She acted as though there were other people in the house with us. It turned out that she was talking about a group of longtime friends. At an earlier point in life, they were very close. Over the years, however, they had developed different interests. As a result, the occasions they were together were not as much fun as they used to be. As near as I could tell, some bitterness had developed among them. She never said there was one particular person who was the problem. She did say that they had all tried to reclaim the closeness of their previous relationship, but nothing had worked.

During the course of the conversation, she drifted away from asking my help to a broader emphasis about the nature of people and their sensitivity to the actions of others. In the end, she felt there was probably nothing that could be done to help her and her longtime friends because many of the circumstances in which they found themselves were so different now. She wasn’t, however, ready to give up.

I was primarily a facilitator in the conversation. I said very little except to nod my head or agree or make a comment that indicated I was listening. Late in the conversation, I again asked how I could help. She indicated I already had by listening to her.

Conversations like this intrigue me because so much of what she says makes sense with respect to human nature and the problems we encounter. At the same time, she is obviously experiencing a delusion that represents a break with reality. It’s just one more thing for which I don’t have a good explanation. I can only say that some of the circuits in the brain are functioning while others are not. There is also a good bit of inconsistency. Sometimes a circuit works. At other times, it doesn’t. That happens for all of us, but it is more dramatic for someone with dementia.

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The Rest of the Day

I am still not ready to conclude that our Covid-19 pandemic is totally responsible, but Kate is clearly going through changes. As I reported yesterday, some of the changes are quite positive. She is definitely more childlike, and that is accompanied by pleasurable experiences for both of us. That is what happened yesterday morning. She was cheerful and enjoying everything to a greater extent than normal. Were I a better writer, I would have been able to more effectively convey that experience as we went through her photo books and then our old photos around the time of the birth of our first child. Both of us had a great time together.

The good news is that it didn’t end there. After her second rest of the morning, she was alert and happy. It was a little early for lunch, so I suggested that we read The Velveteen Rabbit. I wish I could give you an adequate description of her enthusiasm. She responded audibly throughout the entire book. The surprising thing to me was that her responses, although stronger than one might expect for an adult, seemed to be appropriately matched with the story. I believe she was getting the message in her own way.

The rest of the day went well although it was not nearly as uplifting as the first part. For the first time in six weeks, we got haircuts. On days when she gets color, she goes first. Then while the color sets, the stylist takes care of my shampoo and cut. Ordinarily, Kate works jigsaw puzzles on her iPad. Because she has given up her iPad in the past few weeks, I didn’t take it with us. Instead, I took one of her family photo books to look through while the stylist was taking care of me. When she finished, we both walked over to Kate’s chair. She was holding a towel in her hand and using it like a pen to write a note to someone. She didn’t want to stop to get up and have her hair rinsed. She was confused as to how to say what she wanted in her note. She asked me to help her. I picked up the towel and used it and read aloud what I was “writing.” She was pleased.

I had taken a seat a few feet away from the two of them but separated by a partition that was about 4 ½ feet high. Kate was getting along quite well with the stylist, but quite a few times she asked where I was. Each time the stylist told her, she immediately forgot and, moments later, asked again. Kate and I both wore gloves, and I wore a mask. Kate also repeatedly asked the stylist if she could take off her gloves. I was impressed with this because she had automatically taken them off at the restaurant on Sunday. I wonder if she retained some awareness that she was supposed to keep them on. I suspect it was really because she is so unsure of things that she asks about almost everything.

The day had gone very well until I took my shower. I left Kate in bed watching YouTube videos. As I got out of the shower, she opened the bathroom door. She was obviously confused. I asked what she wanted. She said she didn’t know. I told her to give me a few minutes, and I would help her. She started to leave the bedroom. I asked her to stay so that I could help her. She repeatedly asked me what she could do. I told her she could get back in bed and listen to the music on the TV and that I would be right there.

When I was finished, she was in bed but still confused. Typically, I would sit in a chair on my side of the bed and read or work on my laptop before joining her. I decided it would be better to put on a DVD of Les Miserables and get in bed with her. I thought watching together might divert her attention from her confusion. In the long run, it did. She didn’t show any signs of being disturbed, but she didn’t watch. I’m not sure how much she listened.

I turned it off less than an hour later and put on some very soft music on our audio system. I snuggled close to her and told her I loved her. She didn’t say anything, but she did put her arm across my chest. In a few minutes, she asked my name. I told her. She seemed perfectly at ease. It wasn’t long before we were asleep.

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Childlike and Tired

On Monday Kate and I had very little contact until 4:30. I got her up at almost 11:30. She was more than a bit confused but didn’t express the kind of fear she sometimes does. Recently, she has been unsteady after sitting up on the side of the bed or the sofa. The day before, she had fallen back on the bed before attempting to stand up. This time I asked her to sit for a moment. I put my hand on her back to support her. Then I helped her up. She got along all right but was very insecure as we walked to the bathroom.

She experienced one of a number of childlike behaviors when we went to the car before getting a takeout lunch from Panera. She noticed a Dr. Pepper baseball cap that she had long ago hung on the knob of a cabinet door in the garage. Periodically, she takes interest in it. This time she was just like a little child discovering something new and exciting. She thought it was a nice decorative touch (my words, not hers) and said she might hang a number of them around the garage.

After lunch, she was ready to rest. That worked out well because I had a Zoom meeting at 2:00, and she fell asleep on the sofa. She must have been quite tired because she didn’t take off her shoes nor lift her feet to the sofa. She just fell over on a pillow from a sitting position and slept until at least 4:30 when I noticed she had opened her eyes. I got up from my chair and walked over to her and asked if she was about ready to get up. She told me not to talk, that she wanted to talk with me later. She looked like she was bothered by something. I said, “I love you.” She said, “That may be the right thing to say but not right now.” I started to ask her to explain, but she cut me off. I took her hand and told her I would be seated across from her if she needed me. When I started to release my hand, she gripped it tightly. I sat down on the corner of the table in front of the sofa. It wasn’t long before it felt too uncomfortable. I started to gently pull my hand away, and she held it tighter. In five or ten minutes, she was asleep. I took a seat close to the sofa and waited another fifteen minutes before waking her for dinner.

Whatever was bothering her faded from her memory like so many other things. It’s another good example of the pattern of her delusions. She may be resting, but her brain is active and doesn’t function the way it did before Alzheimer’s took over. As I have said before, she had experiences like this before sheltering. I believe, however, that the reduction in her activity has exacerbated the problem. I should add that it is not boredom alone that leads her to rest. She is really tired.

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Kate Was Up Early Again This Morning

Kate called me at 7:15 this morning just as I was about to begin my walk. She was wide awake. I commented on that and asked if she would like me to fix her some breakfast. She nodded, and I proceeded to get her up and finish her “morninglies” (with thanks to Tom Robinson for introducing me to this term) before heading to the kitchen.

Mornings are her most likely times to be confused. I use that term when she seems bothered by not knowing where she is, who she is, who I am, or what to do. I think insecure was a better word to describe how she was this morning.  As she got out of the bed, she said, “Help me; I don’t know what to do.” . She repeated variations of this multiple times before we left the bedroom.

It is not unusual for her to ask, “What do I do?” when we enter the bathroom. Another time recently, she said, “You’ll have to tell me what to do because I’ve never done this before.” Today, I had to do more than explain. She seemed worried that she would fall as she sat on the toilet. I had to put my arms around her and let her weight rest on them. I supported her until she was seated.

She enjoyed her breakfast of apple juice, a small bowl of blueberries, and two slices of cheese toast. She finished more quickly than usual, and we went to the family room where I thought we might read something. I wasn’t surprised when she looked tired, and I asked if she would like to rest. She said, “May I?” (That is something she says frequently. She also asks if she can take off her shoes. She is very respectful, at least 99% of the time. It is more like I am the “person in charge” rather than her husband. Of course, I am both, so I understand. She generally thinks of me as older than she is. She commented on that yesterday, and I asked how old she was. She said she was eighteen.)

She started resting at 8:40. It is now 10:20, and she is sound asleep. Fifteen minutes ago, she opened her eyes and said something I didn’t understand. This is a day for the sitter. I should have plenty of time for us to have lunch before she arrives at 1:00. I plan to make a quick trip to the grocery and then return home for a walk. The balance of the afternoon I plan to remain at home and work on my computer.

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Kate and Breakfast

I’ve lost count of the number of times Kate has had breakfast since we have been sheltered, but it happened again yesterday morning and was especially surprising because of how early she got up.

I got up around 6:30 and went to the bathroom. When I left to get dressed, I noticed that Kate wasn’t in the bed. I called to her and asked where she was. I heard her say, “I’m in here.” She was in the kitchen. As best I could determine, she had been looking for the bathroom. That’s where I took her. She was confused but not disturbed in the way I might have expected.

After finishing in the bathroom, she seemed unusually wide awake. I asked if she wanted to go back to bed or get dressed and eat breakfast. She said, “I don’t know.” I suggested she go ahead and get ready for the day. I think I was motivated by the fact that the past two days, I thought she was going to stay in bed most of the day. Fortunately, I was able to coax her to get up both days. The surprising thing the second day was how quickly her mood changed when she finally decided to get up. At first, she seemed rather resistant. Then I said something (don’t remember what) that got her attention, and she was ready to get up.

She was far more willing to follow my suggestion yesterday. As it turned out, this was a morning when we really did eat breakfast together. The other mornings, I had finished my breakfast and just enjoyed my coffee while she ate. When she finished, I took her into the family room where she wanted to rest. That worked for me because it gave me time to take my morning walk.

The next surprise was her wanting to go home after resting. It was over an hour before I planned to have lunch, so I thought that might make for a restful outing, and off we went. We were back home in just over thirty minutes, and she wanted to rest again. I welcomed that because I purchased a new computer, and that gave me time to setup a few remaining things on it.

This morning I had finished breakfast and my walk. A short time later as I was preparing to upload this post, I heard her say, “Hey, what do I do?” I went to her and found she was wide awake. I got her up and dressed and fixed her breakfast again. When she finished, I suggested we go to the family room. I mentioned Anne Frank’s Diary and asked if she would be interested in my reading some of it to her. It has been a long time since we had done this, so I started at the beginning. We didn’t get too far before she was tired although she seemed interested in the book. She has been resting about thirty minutes and appears to be asleep.

I always try to figure out what causes changes like the increased frequency of getting up so early. I am often left with only speculation. That seems to be the case this time. I do know, however, that it coincides with sheltering. That has affected her sleeping and resting. Some days she rests more than others. One possibility is that she wakes up earlier following a day when she has had more than enough sleep; however, she is ready to rest not too long after getting up. Of course, that is true no matter what time she gets up. One exception was this past Friday when she was awake the entire time the sitter was here. Saturday and Sunday she didn’t get up until around noon when I waked her, and she wasn’t eager to get up then.

There is another explanation that may be related to her sleep pattern. It seems to me that she drifts in and out of sleep more frequently than in the past. That has also been true during the night in the past week or so. I’ll continue to observe as carefully as I can. It will be interesting to see what, if any, other changes occur when (if?) we start to eat out for lunch and dinner again.

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Alzheimer’s Took Kate On a Wild Ride Yesterday.

It’s been a couple of years since Kate started to forget my name, but I have taken satisfaction that, with rare exceptions, she always recognizes me as someone familiar that she likes and trusts. Yesterday morning didn’t appear to begin that way, but it was soon clear she didn’t know who I was and was very suspicious of me. Perhaps, “suspicious” is the wrong word. She didn’t say much, but the look on her face was a little more like anger. Unlike other occasions, I had a difficult time putting her at ease.

Once again, she awoke earlier than usual. When I walked into the bedroom, she was wide awake and greeted me enthusiastically. Her greeting, however, was a little more like I was a good friend she hadn’t seen in a long time. We chatted a few minutes. Then I brought her bear to her. We talked a little more before I asked if she wanted to get up. She said she wanted to rest a little while longer. I told her it was early, and that would be fine. I asked if she would like me to bring my laptop to the bedroom and sit in my chair beside the bed. She did.

An hour later, she woke up. This time she didn’t express any enthusiasm. She didn’t know anything and was scared. I told her I knew a lot about her and her family and would be glad to answer any questions she might have. She didn’t know what to ask or what to do. I suggested that she get up, and I would fix her breakfast. She liked the idea of getting breakfast but not getting up. I spoke to her very calmly and encouraged her to get up, but that didn’t work. Finally, I said, “You’ve felt this way before, and you seemed to feel better once you were up and dressed.” She was skeptical but agreed to try it. She got out of bed, and we walked to the bathroom. I thought she was all right.

She didn’t say much in the bathroom except to ask my name several times and was not as warm and friendly as she can be. Getting dressed was a simple matter. She enjoyed her breakfast but was rather quiet. We had another hour and a half before lunch, so I suggested we read The Velveteen Rabbit. She wasn’t eager but consented. Before I started, she wanted to rest. I thought about her bear and wondered if that might lift her spirits. She acted like she had never seen it and didn’t care about it.

I let her rest until it was time for me to order lunch. I had no trouble getting her up, but her mood had not changed. On the way to pick up lunch, I turned on some music that she likes. When she heard “Shall We Dance” from The King and I, I noticed the first flicker of a change. On the way home, I played more.

When we returned home, I played the same album and didn’t talk much. Neither did she. She enjoyed the music. During one of the songs, she reached her hand out to me. I took it. She put her other hand over mine, and we sang together. She was back to normal.

It wasn’t long before the sitter arrived. As I have been doing during this period of sheltering, I took a walk. It took me a few minutes to get ready. During that time, I noticed that Kate was talking with Mary. It was at least ten minutes before I left, and they were still talking. I make a point of this because their conversations are usually brief and periodic. Kate rests most of the time the sitter is here. I was encouraged by Kate’s mood and that the two of them were engaged in such natural conversation.

I was only gone about forty-five minutes and was pleased to see that Kate was not resting. She had one of her family photo books in her hand. Mary was seated in a chair across from her. I didn’t go in the room to let Kate know I was home. I am sure Mary heard me come in. I checked email and then had two lengthy conversations with friends.

After the second call, I heard Kate talking enthusiastically about the things she was looking at. Several times she asked when I was coming back because she wanted to ask me some questions. I decided say hello. She was excited to see me, but she was mostly excited about the photo book with its pictures and the accompanying information.

She was particularly interested in my remembering everything so that she could use it in her own album. It always intrigues me that even when I tell her this is her book, and she has all the information, she never understands that it is hers and is available to her anytime. I suspect this occurs because she believes she is in the home of a relative and not her own home.

At any rate, she was unusually animated. She and Mary talked the entire time she was here. I walked Mary to the door when she left, and she told me that she had taken Kate to the bathroom while I was gone and changed her. That was the first time that has happened in the two and a half years Mary has been with us. This was a good indication of how good she felt about Mary. Kate even commented to me about how much she liked her.

Not long after Mary left, we went to pick up our takeout dinner. I had given Kate her bear (Charlotte), and she wanted to take it along with her in the car. On the way home, she mentioned sharing her meal with Charlotte. I wasn’t sure how far she was going with this. I thought Charlotte could get pretty messy. As it turned out, she did get a little food on her but not much. I propped her up on the table beside Kate and got a small plate for her food. Kate put a little food on the plate and also tried to put some in her mouth. She loved attending to Charlotte.

Kate’s mood changed after getting dressed for bed. She didn’t know where we were and was worried about people who were either in the house or who might be coming over. She seemed frightened. I assured her we were the only ones in the house and that no one was coming. She wasn’t convinced and repeatedly asked me where we were and why. This went on for at least thirty minutes before she seemed to relax.

When I joined her later, she greeted me warmly as though she had been that way all day. I was glad to end the day on a high note.

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Kate’s New Friend

Quite sometime ago, a Rotary friend whose wife has Alzheimer’s, asked me if Kate enjoyed stuffed animals. He said his wife loves them, and he had given her a collection of them over the course of her disease. I told him Kate had never had a particular interest in them but enjoys children as well as cats and small dogs. I don’t think I mentioned the ceramic cat in our family room. She’s always been fond of him and for years kept him snuggled around the toilet in the bath off our laundry room. I moved him to the family room a couple of years ago. She sees him more often now and almost always stops to greet him in the morning.

More recently, I’ve thought of getting her a stuffed animal, but it was one of those things I never got around to doing. That changed a week ago but not because I finally took action. A colleague at the office brought us dinner last week and along with that a stuffed bear for Kate. He (she?) was an instant hit. Since he entered the picture at a time when her memory is weak, she doesn’t usually ask for him. There has been one exception. I don’t recall the exact circumstances, but she had been holding him a few minutes before and went to our bedroom. She said, “Where is he?” I said, “Who?” She answered, “My little friend.”

Her interests change a lot from day to day and, sometimes, from moment to moment. I wondered how long her fascination would last. Today marks a full week since the bear became a part of the family, and her interest has not diminished. She loves holding him in her arms and often talks to him. There are a variety of situations in which she has been holding him but then does something else that makes that difficult.

One of those times is eating dinner. Each night I take the bear from her and rest him against a pillow on the window seat next to the table. I chose that because Kate has been taken with the pillow she thinks is a person. Since placing the bear, she hasn’t “seen” the person.

Anytime she has been holding the bear, and it is time to get a takeout meal, she wants to take the bear with us. He has even made a couple of trips to the bathroom with her.

We haven’t settled on the bear’s gender but may be coming close. The other day Kate said she thinks it’s a girl, but she slips back and forth between referring to “her” as “he” or “she.” We’ve talked about a name, but that, too, is unsettled. Two days ago, I did a search on girl’s names and read quite a few to her. The only name Kate liked was Charlotte. I like it as well, but I keep thinking it is a better name for a spider. (Sorry about that. I couldn’t resist.)

So far, Charlotte has been a friend to hold while Kate is seated or resting, but I’m also exploring its therapeutic benefit. Yesterday, for example, she was confused when she awoke. I brought Charlotte to her and used her a little bit like a puppet to see if I could relieve any of her anxiety. I discovered there is a spot at the back of the bear’s neck that, when pressed, causes her head to nod. Similarly, squeezing her around her waist causes her arms to move up and down. It didn’t take but a moment for Kate to take Charlotte in her arms. She felt better.

I’m not surprised that the bear has been so well-received. Kate is definitely more childlike now. I suspect we may find that Charlotte provides increasing comfort in the days ahead. Everyone needs a friend.

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Going Home

In my last post about Kate’s wanting to go home, I suggested we might be heading for a new routine of taking a ride in the car after every meal. That has become a pattern since then. It happens almost every night when we finish dinner. It has also happened a couple of times after lunch. It has become so routine that she doesn’t ask to go home. She just says, “I’m ready to go now.” She does sometimes say she wants to go home at other times during the day, but I have been distracting her attention to something else. That works most of the time.

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Update on Kate’s iPad Usage

For the first time, Kate’s screen time was zero for the week ending Sunday, May 3. This doesn’t necessarily mean she will never use it again, but it looks like we are at the end of a long and beneficial ride.