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.

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.

A Rare Conversation

Despite a few issues I wish Kate hadn’t experienced, the past week has been a good one. There is one moment that stands out . We were seated on the sofa in the family room. I think I mentioned our 57th anniversary that is coming up on May 31. We talked about the good times we’ve had together and how fortunate we have been.

I don’t remember her exact words, but she expressed appreciation for my taking care of her. She went on to talk about the problem she has and that I had helped her get through it. She never mentioned Alzheimer’s, but the way she talked it sounded like she understood she has a serious problem. She conveyed that she thought she was getting better and might get over it. It has been clear to me for a long time that she is aware she has a problem, but the tone of this particular conversation was different. In other conversations she has appeared disturbed. This time she seemed more resigned and accepting of her situation.

I told her that no matter what may happen that she could depend on me to be with her. We shared our thinking that everyone faces trials and that our relationship would be a source of strength for us.

Kate has said almost nothing about her Alzheimer’s since the first few weeks or months following the diagnosis over nine years ago. Except for my accepting the role of planner, we have put our emphasis on living in the moment. I believe that has paid many dividends in the years since. As someone who is more open about my life, I have wished many times that we could have had periodic conversations like this very brief one. Even this one was a bit oblique. At this point, she doesn’t know the real problem or what lies ahead, but it was the clearest sign of her recognition that “something” is wrong, that she is grateful for my help, and that, together, we will make the best of it. We are in complete agreement.

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.

A Nice Way to Start the Day

We’re off to a good start today. At 7:15, just as I was beginning my morning walk, I saw on the video cam that Kate was about to get out of bed. When I got to the bedroom, she seemed wide awake and wanted to get up. She was confused but cheerful. The only problem we encountered was getting her on the toilet. It was a challenge explaining that I wanted her to sit on it. It was only when I physically assisted her that she was able to do it.

I got her dressed rather quickly and we went to the kitchen for breakfast. Afterward, I took her to the family room where we went through one of her photo books. She expressed an unusual degree of enthusiasm and several times commented on how happy she was. When we finished, she wanted to rest.

I decided to take advantage of that and prepared to begin my walk. I walked only a few minutes before she started to get up. I don’t ever recall her getting up so soon after beginning to rest. She was still in a very good humor. I got my laptop and showed her photos taken while she was pregnant with our first child and the time of her birth. She was quite interested. As she had done earlier, she mentioned how happy she was. At one point, she said she wanted to tell me something. She said, “I just want to thank you and all the others for doing this.” As often happens, she apparently felt she was in someone else’s home and was being entertained by a group of us. I didn’t ask her to explain.

I wasn’t surprised when she wanted to rest again. I took her to her recliner where she is asleep. I’m not sure how long she will rest. I think I will go back to my walk, but I feel good about the way our day has started.

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.

Simple Pleasures

I’ve learned that predicting what Kate will be like from one day to the next is far from easy. That is not to say she has bad days. If any day has been a bad one, it would be one of the days she has slept/rested until late in the day. I would call those bad because they were so far from her happy times.

I was hoping that Saturday might be another day like Friday. I got my wish. She woke up in a good mood. Everything was fine. Unlike the day before, she was up before 8:00. That meant another time I was able to fix her breakfast and sit with her while I drank my coffee. Despite the fact that it interrupts my normal routine, I enjoy this time with her.

Both days, she was unusually childlike. Saturday morning, she asked permission or approval of just about everything she did. It started with the bathroom. That isn’t unusual. It is normal. A couple of weeks ago as she was about to sit on the toilet, she said, “You’ll have to tell me what to do. This is the first time I have ever done this.” Her seeking permission continued throughout breakfast and the balance of the day. She preceded almost every sip of juice and every bite of her fruit and cheese toast by asking if it was all right to do so. Although I have considered the possibility that she is worried about getting my approval, I think it is more likely that she does this because she is uncertain of what to do. She expresses that in many ways almost every day, but it was especially noticeable that day.

After breakfast, she rested a while and then spent some time looking through one of her photo books before lunch. She was very interested. I was glad to see that because she hasn’t been as enthusiastic recently. Like the day before, it was a day of simple pleasures. We interspersed moments with photo books with periods of rest. It was a very pleasant day.

That changed a bit after her last rest in the afternoon. I got out the “Big Sister” album and began by pointing out the cover photo of her and her brother. I immediately met resistance when she made it clear that she and her brother were not in the picture. She didn’t know who they were, but she was confident they were some other children. I flipped through a number of other pages, and she responded the same way about pictures of her mother and father. She wasn’t interested in going further.

The rest of the day went well. As I got into bed that night, I got a reminder of the difference between her rational and intuitive knowledge of me. She is almost always awake and glad to see me when I get in bed. That was especially so that night. She had a beautiful smile on her face. Then she asked, “What is your name?”

A Very Good Day With One Strange Thing

It’s always good to be able to report the especially good days that Kate and I continue to have. That never means they don’t include sad, troublesome, or strange experiences mixed with all the good. The contrast between the good and not-so-good has never been more striking than the past two days.

I consider a day to be good when Kate seems especially happy all or most of the day. Friday, she began the day cheerfully and showed no obvious indication that she was disturbed over any confusion she may have had. She didn’t ask where she was or who I was. I didn’t go in to check on her until just before noon although the sitter was to arrive at 1:00. She was awake and got up easily. We were eating lunch when Mary arrived.

The transition from our being together and then handing her off to Mary has gotten smoother over time. It has been even better since we have been sheltering. I think that is a direct result of my not leaving immediately when she arrives and the fact that I am still around much of the time she is here.

About forty-five minutes before Mary was to leave, I overheard Kate get up from her rest and begin a conversation. Then I heard her ask about the bathroom. Because we still try to maintain physical distancing while the sitter is here, I walked into the room and asked if she wanted to go to the bathroom. Kate was pleased to see me. I feel sure she had forgotten I was still in the house.

When we walked back into the family room, Kate greeted Mary warmly and said, “Who are you?” I said, “This is your friend, Mary. She stays with you when I am not here.” I added that I still had a few things I wanted to take care of in the other room and left the two of them together. They engaged in an easy-going conversation.

I ended up letting Mary go about twenty minutes early. When I did, Kate thanked Mary for being here and went on to say a number of good things about her. After Mary was gone, Kate told me she really liked her.

The day had gone well, so I was surprised when we had a strange experience after she had gotten in bed. I had turned on some YouTube videos of Andrea Bocelli. She relaxed for a short time and then said she needed my help. I went to her bedside, and she showed me her hand and said, “See that?” I didn’t see anything but told her I did. She wanted me to pull back the covers and proceeded to take off her night gown. Then she gave me careful instructions about running my hands over her forehead, around her neck, over and under her arms and down to her feet. She was very serious about this as though something harmful was on her body. When I finished, she was fine.

It was almost two hours before I went to bed. She was still awake. I don’t know whether she waits for me to come to bed or she has rested so much during the day that she isn’t sleepy. I think it’s the latter, but she is always glad when I join her. It’s a good way to end the day and is typical even on days that haven’t gone as well as this one did.

A Change in In-Home Care

Until sheltering came into our lives, we have had the same schedule for in-home care for the past two and a half years. One sitter comes at noon every Monday and stays until 4:00. That allows me to make my regular Rotary meeting, go to the Y, run errands and attend occasional meetings for the balance of the time. Another sitter comes on Wednesday and Friday between 1:00 and 5:00.

I have always preferred the 1:00 time for both sitters, but that wouldn’t allow me to make Rotary. Our club suspended its meetings in April, and I took advantage of the change to request that the Monday sitter come at 1:00 until the resumption of our Rotary meetings. I thought that had worked fine, but last week the Monday sitter showed up at noon just as Kate and I were getting ready to leave to pick up a takeout meal from Panera. It turned out that she had thought that we had made the change only for the month of April.

In our conversation, I discovered that she has other commitments after 4:00 and had only been staying until 5:00 to help me out for a short time. As it turned out, I haven’t felt the need for her during this time. I continued the service for two reasons. First, she has been with us over a year, and I didn’t want to risk losing her if I temporarily discontinued the service. Second, I didn’t want her to sacrifice the income in case she couldn’t find something else until we started again. When I finally understood the situation, I told the agency not to send anyone on Monday until Rotary begins its regular meeting schedule.

So, for the month of May, I only have a sitter two days a week. Ironically, I feel good about this arrangement. While sheltering, I have only run sporadic trips to the grocery or pharmacy and taken a short walk around the neighborhood. I’ve spent the bulk of the time at home. As a result, I haven’t worried about getting Kate up as early as I had been. Quite a few times, we have been eating our lunch when the sitter arrived. She would take a seat in the family room until we finished eating. After that, Kate usually rests for the balance of the afternoon, and I have worked on other things and made phone calls without any interruptions. I think Kate has been comfortable with the arrangement as well. This means there is never any abrupt time when I am leaving for an extended period of time. I generally say something like, “I’m going to run to the grocery and will be right back.” That is something she has been able to accept without any problem. Thus, I have felt more relaxed during our sheltering.

The question now is what is going to happen when Rotary begins. As it stands, the agency will return the same sitter when I tell her it’s time to change back to the noon to 4:00 schedule. That assumes that the sitter has not been assigned to someone else. I am wondering about the possibility of changing sitters even if the same one is available. I have never felt as comfortable with her as I do with the other sitter. On the other hand, Kate doesn’t require a lot of attention. She rests most, and sometimes all, of the time the sitters are here. Like most changes of this nature, I can’t be sure that the replacement would be better, perhaps not as good. Of course, I could try another one or several, but that would mean introducing Kate to more than one new person. I am leaning toward accepting the same sitter if she is still available, but I have almost two weeks before I have to make a final decision. We’ll see what happens.

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.