This Morning

I looked at my watch. It was 5:29. I felt rested and decided to get up. Kate and I were lying very close together. She said, “Who are you?” I said, “It’s me.”

Kate:             “Are you a boy or a girl?”

Richard:        “A boy.” Kate (very calmly): “Well, I don’t think we should be in the same bed together.”

Richard:        “I was just about to get up.”

Kate:             “What are you going to do?”

Richard:        “I was going to get dressed and then have breakfast.”

Kate:             “That sounds good.”

Richard:        “It’s still early. You might want to sleep a little longer.”

Kate:             “Okay.”

Richard:        “I love you.”

Kate:            (chuckles).

Azheimer’s Has Been Testing Me For The Past Two Days: Part 2

The next morning (Friday), I woke up just before 4:00 and was awake for 30-45 minutes. I made up for it by sleeping until 6:25. As I started to get up, Kate spoke to me. She was wide awake and ready to get up. I asked if I could go ahead and get to the bathroom and dressed before she got up. That was fine with her. I thought she might have gone back to sleep by the time I finished, but she still wanted to get up.

Everything went smoothly, and we were in the kitchen about 7:15. That is really early for her. I fixed breakfast for both of us. She was cheerful and loved her apple juice, blueberries, and cheese toast. It was one of those times she mentioned repeatedly how good everything was. I shared some of my scrambled eggs. She also liked them. She was talkative and didn’t know who I was, but we had a good time.

When we were through, I told her I wanted to show her something. We went to the family room where I picked up a photo book of her father’s family. We’ve looked at it a lot over the years but don’t usually get through the entire book before she wants to rest. That morning was a notable exception. She took far more interest in it than she has before, and we finished the whole album.

By this time, she was tired and wanted to rest. That’s when I got my laptop and sat in a chair across from her. We had enjoyed such a good time together that I was eager to write this post. She didn’t rest long and didn’t sleep at all before gathering three different photo books in her arms and got up from the sofa as though she were going someplace. Then her attention focused on the flowers and plants outside and inside.

Moments later we took a seat and began one of those long conversations in which she is the primary speaker. I can’t begin to summarize what she said. Much of it I didn’t understand. She talked about a child or children she was serving as a mentor. At least, that would be my interpretation. She was enthusiastic about the children and the work she was doing. I was happy to be a facilitator. As I suggested in my previous post, I was eager to write about having such a special experience, but I also hated to stop her. The conversation lasted almost forty-five minutes before I brought up the subject of lunch.

We got a takeout meal, and the good times continued until we finished our meal. I stepped away from the table to pay someone for work he had just completed on our swimming pool. When I got back to the table, the look on Kate’s face had changed dramatically. I mentioned it and asked what was troubling her. She was quiet and didn’t know what to say. Over the next ten minutes or so, she didn’t talk much. She was troubled by something, but her expression didn’t suggest the usual issues. She didn’t look like she was experiencing anxiety as she does in some moments when she doesn’t know “anything.” Neither did she look afraid. She tried several times to say something. Each time she had trouble getting it out.

We were silent a few minutes before she asked if she could tell me something. I was eager to hear and quickly agreed. She began by talking about a boy and a girl. I had a hard time making any sense of it but listened without saying anything. Several times, she said she didn’t want to hurt me. I just let her talk. As she continued, it became clear that a baby was involved in some way. I began to sense that the girl and boy had had a baby out of wedlock. From her first mention that what bothered her most was hurting me, I thought she might have had a delusion about having had an affair; however, that seemed too far-fetched. Gradually, I began to realize that the girl she was talking about was her and asked.

That began an additional conversation in which I tried to reassure her that I would forgive her and that we could continue our relationship as though it had never happened. The sitter arrived at that point. I told her we would join her shortly. We talked an additional 25 minutes before I walked Kate to the family room. We spoke with Mary a few minutes. Then I told Kate I had a few things I wanted to take care of in the kitchen (my office) and assured her I would be at home and Mary would be in the room with her.

Everything was all right for two hours before Kate walked into the kitchen looking for me. She was disturbed again. This time she wanted to talk with her mother. Like the issues I confronted the day before, I felt on the spot to say the “right” thing without knowing for sure what that was. This time I told her that her mother had died. I almost always avoid telling her because it sometimes bothers her though only momentarily. Normally, she accepts it without a problem.

It was different this time. She wasn’t hurt at all, but she adamantly refused to accept what I had said and continued to ask to call her. I reminded her that she had cared for her mother the last 5 ½ years of her life here in our house. She never believed what I said and asked to speak to her father. I reminded her that he had died 30 years ago. That didn’t fly any better than telling her about her mother.

At least, Kate decided to go in a different direction. She said she could call her parents’ church, and they would know. I told her we might have trouble reaching someone who might know about her parents. Strangely, she accepted that although she repeated her desire to call the church several other times over the next 30-45 minutes.

I brought up her brother and said we could call him. That pleased her, but I placed calls to Michigan where he and his wife are spending the summer and was unable to reach him. Then she talked about friends who might be able to help. I thought of a woman with whom she had worked when she was the church librarian. I was unable to reach her as well.

A couple of years ago, I started a 3-ring binder with information about Kate and her family. I remembered that it contained a copy of her father’s obituary. The binder was sitting on the table in front of us. I opened it and read the obituary. Kate finally accepted that her father had died. Then I went to my computer and pulled up her mother’s obituary and read it. She accepted that as well, but that led to an additional problem.

She was quiet for a moment before saying, “I have to go to Fort Worth.” That is where she was born and lived until two years after we married. She asked if I would take her. At first, I tried to discourage her, but that was a mistake. I switched gears and agreed to take her.

We got up from the sofa and went to the car for one of our regular drives “home.” I drove for 30 minutes before stopping to order a takeout pizza from a place near our house. During the drive, she calmed down and forgot all about going home or wanting to call her parents. We picked up the pizza brought it home, and the rest of the evening went well. The day’s crises were things of the past.

Stunned by a Conversation

You might think that by now nothing Kate does could surprise me, but a conversation she had with her sitter yesterday did just that. A few times Mary has mentioned that Kate has been talkative, but this was the first time I was home to get a better idea. I was stunned, not that she was talkative but that she controlled the conversation so well.

Since Kate normally wants to rest after lunch, I assumed that she might nap after Mary arrived. That proved to be wrong. The two of them began to talk as I went to the kitchen to work on my computer. I could hear their voices but wasn’t able to understand what they were saying.

I watched a video of a lecture at the Chautauqua Institution. When it ended an hour later, they were still talking. Kate was clearly taking the lead. The way she asked her questions wasn’t just like they were two friends in conversation. It reminded me of a sympathetic journalist conducting a conversational interview, giving her own thoughts about the issues they discussed.

Twice I walked close to the doorway to get a better idea of what they were saying. I heard Kate ask her about her husband and their relationship. She also talked about our relationship. Kate raised the issue of values, and that led to an exchange over relationships with other people. At one point, Kate asked her about her church. I have no idea what else they discussed, but the total time they talked was an hour and fifty minutes.

I didn’t listen long. It was still hard to follow everything they were saying, but I was struck by Kate’s command of the conversation. She would ask Mary a question, listen to her answer, ask follow-up questions and then express her own thoughts. Kate and I have had a number of somewhat similar conversations. During those, Kate has done the talking, and I was a facilitator. In addition, much of what she has said to me was based on a delusion. Yesterday’s conversation was back and forth more like two friends having a pleasant conversation rooted in reality rather than a delusion. I suspect a person overhearing it might not have recognized that she has Alzheimer’s and certainly not in the last stage. It took me by surprise. I wish I could have heard more clearly. I know she stumbles over her words when she talks. She must have done that, but I didn’t detect any sign of it.

It made me think about the difference in the relationship that she and I have compared to her and Mary. Our relationship is dominated by my role as a caregiver. She looks to me as the person in charge who has the answers to her questions and knows what to do when she is in doubt. It may seem strange, but I think she sees Mary as more of a friend than a caregiver. I like that.

To use an old expression, to me that makes Mary “worth her weight in gold.” Kate no longer has any close friends. They have either died or moved out of town. We get together with other people (at least until covid came along), but couple relationships can be quite different than getting together with a close friend. It is harder for Kate to play a significant role in group conversation. Part of that is because I am more of talkative than she is and generally take the lead. Along with that, Kate looks to me to do just that because it takes the load off her.

I have seen a number of other situations in which Kate has been able to converse easily with another person. She handles herself well and did that with Mary yesterday. She is not always in the mood to talk. It’s been almost three years since Mary became her Wednesday/Friday sitter. To the best of my knowledge yesterday was one of only a handful of times when that coincided with Mary’s being here, but I hope she will have more conversations like this in the future.

The Ups and Downs of our Present Life

Looking back at the almost nine and a half years since Kate’s diagnosis, I see how gradual Kate’s changes were during the earlier years. We lived as though she were stable and adapted in various ways to make life easier or safer. For the most part, that meant giving up activities that had been an important part of our lives. I’ve mentioned all of them as they happened. The big ones for Kate involved her giving up her computer, working in the yard, and, finally, the iPad. Both of us gradually became less active in church and community work. We gave up all evening activities except for eating out for dinner, and we do that earlier than before. In 2015, we took our last international trip. In 2017, we made our last trip to Chautauqua, and we made our last trips to see our children in 2018.

Although all of these were significant changes in our lifestyle, they occurred slowly over time. Our world was getting smaller, but our daily routine was comparatively normal. That is no longer the case. The pace of change picked up within the past year, especially the past six months and even more during the pandemic. As a result, it is much harder for me to remember many of the details that I would like to report. That means I report on fewer issues that arise on a daily basis. I suspect that I may do less reporting on what a day is like and focus more on specific incidents I am able to recall. With that in mind, here are several things that have happened in the last few days.

After finishing my shower three nights ago, I walked into the bedroom and noticed that Kate was lying almost perpendicular to the headboard. I spoke to her, and she pointed to a section of the sheet beside the outline of her body. She motioned to me to come closer and said, “I need your help.” She pointed again and said, “Read this.” As you might have guessed, there was nothing there but the bed sheet. I hesitated a moment trying to decide what to say. Before I could ask any questions, she again asked me to read it. I took a moment to look at the sheet and pretended I was reading something.

When I finished, she asked me what it said. For a moment, I was puzzled. That must have been obvious to her since she mentioned something about ways that someone could help. I still wasn’t sure what she wanted. After a little probing I learned that she wanted me to help her with a young man and woman who were apparently new to our area. She wanted me to introduce them to other people and give them information that would be helpful about our area. She wanted us to meet with them and asked for my advice about the time and place of our meeting as well as taking charge of arrangements.

As I gave her my recommendations, I began to wonder how long this conversation would go on. It turned out to be very short. When I mentioned that I was available for lunch the next day, she said that was too soon. I told her I would call him and set up a lunch meeting several days after that. She was agreeable to that and thanked me for helping her. She went on to say it was time for her to get to bed. She said this in a way that made it clear that she did not recognize me as her husband.

For much of the time yesterday, she wasn’t sure who I was. That was true at lunch when I said, “I’m not much of a talker.” She broke into laughter. Obviously, I was not a stranger to her.

After lunch, she rested. Two hours later, she started to get up from the sofa. I asked if she would like for me to read something to her. She was receptive, and I picked up The Velveteen Rabbit. Before reading, I showed her the drawing of the rabbit on the book’s cover. She had some difficulty comprehending what a stuffed rabbit is and wasn’t particularly interested. As I proceeded to read, her interest rose quickly. As on other occasions, she responded audibly to quite a few passages. Each time her emotions were appropriate for what I had read.

When I reached the part where the boy refers to the rabbit as real, she asked if I were real. I told her I was. Without hesitation, she asked how I knew. I told her that was a good philosophical question. I went on to say that I felt I was real because I was able to interact with other people, and they responded as though I am real. She didn’t want to pursue it any further, but I thought it was interesting that she asked both questions.

It also made me think about her interactions with her stuffed bear. She cuddles him and talks with him as though he is real. She does the same thing with other inanimate objects like a pillow in our kitchen. On the other hand, she doesn’t always seem to see her bear as real. Yesterday, she was carrying him in her arms as she started to walk down the steps into our garage. I asked if I could hold him. She said, “No, I don’t think that would look right.” I said, “You don’t think that would look manly.” She responded with an emphatic “No.”

The best part of the day came after we finished the book. I reminded her that she had been a librarian and that she must have enjoyed introducing so many children to books. That led to a conversation that lasted almost an hour, during which she did most of the talking. She told stories about her relationship with her students. At one point, I mentioned that teachers have a big impact on their students. That prompted her to tell me about students who had thanked her for what she had done for them. While there is no way for me to be sure, I don’t believe anything she said actually happened. I am sure she was adlibbing, but she enjoyed talking, and I enjoyed listening. The conversation was especially interesting because it showed such insight regarding students, teachers, and their relationships while the facts seemed to be fictional. To be sure, there is some sadness associated with moments like these. At the same time, the nature of the conversation also seemed quite natural, like those we had before Alzheimer’s. At this point in the disease, conversations like that are a pleasure. I count them as treasures.

Our Days Are Always Eventful

Kate was up early once again on Friday. This time it was right after I had dressed and was about to get breakfast. She seemed less disoriented than usual. I got her ready with no problem, and we went to the kitchen where we had breakfast together. When we finished, she wanted to “go home.” I took her for a 20-minute drive.

When we returned home, we sat down on the sofa to look at a photo book. We didn’t even open the cover before she wanted to rest. I went to the desk in the kitchen. It wasn’t long before I heard her say something. She was getting up and wanted to go home. We took another ride and were back home before 10:00. She was ready to rest.

I was preparing for a Zoom meeting at 2:00 and was testing my setup in the guest room when I heard her say, “Hello.” When I got to the family room, she was walking in from the kitchen. She was greatly relieved to see me. She also seemed disturbed by something. I tried to comfort her for a few minutes before she told she told me she had done something she regretted. She said it wasn’t a big thing and that other people might think nothing of it, but to her it mattered.

I asked if she could tell me about it. We sat down. She wanted to tell me but said she didn’t know how. As often happens, she wasn’t able to give me a consistent explanation of the problem. I did learn that it was something that had occurred in the past and that it involved the two of us. Once or twice she said she couldn’t even remember what it was. Later on, I asked her if she remembered what she had done, and she said she could. She just didn’t know how to tell me. I assured her that it would not be a problem for me. She said she knew that, and that made it even harder to tell me.

It seemed like a good time to try to divert her attention. Even though it was a little early, I suggested we order a meal and bring it home for lunch. She agreed, and we got in the car again. She was troubled all the way to the restaurant but apparently forgot everything on the way home. She didn’t said another word. I wonder what she thought she had done.

Two of Friday’s Delusions

Kate’s brain continues to work on overtime. Her delusions are rampant. Fortunately, the vast majority of them are harmless. One of those occurred in the wee hours Friday morning.

Around 2:00 a.m., I awoke when I heard her say something. Initially, I didn’t understand, but she apparently had a dream. She talked about “Them.” As she continued, I learned that they were a couple who had experienced something that seemed to bother her. She was close to being in tears and talked about thirty minutes. During that time, I asked a few questions for clarification, but it still wasn’t clear what was disturbing her. After a while, she was whimpering. I said, “Tell me what’s bothering you? Why are you unhappy?” She said, “I’m not unhappy. I’m happy for them.” She never told me exactly why, but I gathered that a couple of young people she knew had gotten married. What I thought was an expression of sadness was really joy.

The other incident happened while the sitter was here. Except for a brief time when I went to the grocery store, I remained in the house. That has become typical during our period of sheltering. Kate spent part of the time looking at a photo book and talking with Mary. Then she rested for a short time. Just before 4:00, I overheard her say something to Mary that made me think she was concerned about something. I listened more closely and heard her say she needed to go home. Mary explained that she was at home, but, of course, that didn’t work. I’ve learned that myself, but I still test it from time to time. Occasionally, it works momentarily.

A few minutes later, I went in the room to check on Kate. She was emotional when she saw me. It was one of those occasions when she felt an intense need for my help. With much relief, she said she was glad to see me. She asked if I could take her home. I said I would. Although Mary wasn’t scheduled to leave for another hour, I let her go, and Kate and I went for a ride.

This was the second time recently when we left for “home” almost fifty minutes before I was scheduled to pick up dinner from a caterer at 5:00. I am glad to report that the ride was worth it. Kate was calm in the car and forgot all about going home. We brought the dinner home and had a pleasant meal and evening afterward.

Alzheimer’s continues to pull her in different directions. That requires more attention from me. It’s not just a time issue. It’s also figuring out how to respond to each new situation. Despite having a lot of tools in my toolbox, I frequently find a need for something new. I now have a better understanding of why “Do-it-yourself” home repair people always need new tools.

Change in the Air

Since the coronavirus came on the scene, change has become a regular part of everyone’s life. As my recent posts have suggested, Kate is no exception. I have a much harder time anticipating what a day will be like. That’s not because the good times have passed. They haven’t. They still represent a much larger percentage of our experiences than the trying, or even challenging, moments, but she definitely keeps me on my toes. Monday represents a good illustration.

The day began early, about 2:00 a.m. to be exact. It lasted off and on for the better part of two hours. I can’t recall the precise conversation. She was concerned about either a responsibility she thought she hadn’t fulfilled or what was on our agenda for the day. She asked me a few questions that I answered only to be followed a short time later with the same questions and my same answers.

Because she lost some sleep, I assumed she would get up a little later. That turned out to be a wrong assumption. About 7:30, I heard her say something just as I was going to take my morning walk. I went to the bedroom and found that she was confused but not seriously disturbed. She just wanted help understanding where she was and what she was supposed to do.

I asked if she was ready to get up. She said she didn’t know. I suggested that I take her to the bathroom. She agreed and on the way said, “Where’s my husband?” At the time, it was not a surprise, but her failure to recognize me was repeated throughout the day. It was the second time that has happened in the past week or so.

After she was dressed, I gave her a bowl of strawberries and blueberries and a glass of apple juice. For the first time, she showed little interest in either the fruit or her juice. She left half of the fruit and didn’t want any cheese toast when I offered it. She was quite talkative, however. Like other recent conversations, she didn’t realize that she was talking to me and kept saying she wished “my husband” were here to explain more of the things she talked about. We talked for an hour at the kitchen table before I assumed we would adjourn to the family room where she would rest. Wrong again.

Instead, she noticed a letter from Blue Cross on my desk. It was a communication about a medication I take for a dry eye condition. She picked it up and made an effort to read it. When we walked into the family room, she took it with her and then went into the living room. She took a seat and started reading it. I remained in the family room. I knew she wouldn’t be able to understand it but was fascinated to see how long she would try and made periodic visits to see if she was napping or reading. Each time she was trying to read with the same degree of seriousness she had shown a few days earlier when she tried to read The Velveteen Rabbit.

She came back to the family room in about twenty minutes and took a seat beside me. She started to read the letter when I noticed that she had it upside down. I asked if she wanted me to read it. She did. First, I explained what it was and that it included the company’s non-discrimination policy in nine languages besides English. I felt exactly the way I had the other day. I was glad to see her try to read but sad because she faced such an impossible task.

My Rotary club started its meetings again, and I re-established our arrangements to have a Monday sitter. She is someone who had been with us almost a year but not since September 2018, so I asked that she come an hour early to give Kate an opportunity to develop a comfort level with her before I left.

That went well, but when it was time for me to leave, Kate wasn’t comfortable about my going. She wanted to go with me. I told her the sitter be with her and that I would be back after my meeting. She wasn’t happy but accepted without a protest. I gave her a couple of her photo books to look over while I was gone.

When I returned, she was resting, but awake. I brought in groceries I had picked up on the way home from Rotary and then checked email. I heard her talking with the sitter and walked into the room. She was glad to see me. I told the sitter she could go. Then Kate and I spent time with one of her photo books.

During dinner, she said she was tired and wanted to go to bed early. She said the same thing after dinner. When we walked into our bedroom, she wanted to lie down. I suggested that she brush her teeth, put on her night clothes, and call it a day. She agreed, and I got her to bed. I watched the evening news and then put on some music for her while I took a shower.

After my shower, she began a long conversation. She was in bed when it began, but she soon took a seat on my side of the bed across from the chair in which I was sitting. I couldn’t fully understand what she was talking about, but I surmised that she thought I was a student with a part time job at whatever place she thought we were in, perhaps a hotel. I also gathered that she was trying to help me get a regular job. She asked if I knew her husband. I told her I did. She said he would be able to help by directing me to people who might be hiring. She said he was at work but would be coming home soon and repeated this a number of times. Realizing that he might not come home before I left, she asked if I had her husband’s phone number. I told her I did. Then she said, “If you run into a problem, call Richard.”

She was very eager to help me and kept repeating the whole scenario multiple times over an hour. For at least the last thirty minutes, I made an effort to close the conversation so that I could get to bed, but she continued. When she was nearly finished, she tested me to see if I remembered what she had told me to do. She said, “Now, what do you do if you run into a problem?” I told her I would call Richard. I don’t remember the other question, but I do remember the answer was to contact her. I was glad to have passed. She continued to talk and tested me one more time before the conversation ended for good.

We had what I thought was a rather amusing conclusion. I suggested we get to bed, and she asked where she was going to sleep. I pointed to her side of the bed. She was surprised. It turned out that she thought she would be going “home.” I told her she would be staying the night. She asked where I was going to sleep. I pointed to my side of the bed. She seemed a little hesitant but got in. I turned out the light and got in bed beside her. She was comfortable being with me, but she didn’t respond to me like I was her husband.

It is obvious that Kate is changing in a variety of ways. Her sleep pattern is unpredictable. She has more delusions. She has very talkative spells. As usual, the only way I can make sense out of it is to remind myself that her Alzheimer’s is a result of the plaque and tangles in her brain. They continue to grow and cause the circuits in her brain to malfunction. Regardless of the explanation, Kate is clearly changing, but I am glad to say that she is almost always kind and gentle. Just yesterday, she suddenly snapped at me because of something I said. She immediately apologized and said, “I really don’t like to be that way.” No wonder I want to give her the best care I can.

Very Talkative at Latest Doctor’s Visit

Last week, Kate had a regular appointment with her primary care physician. She sees her doctor every four months though covid-19 delayed this one by ten weeks. The only thing that wasn’t routine was Kate’s behavior. She was unusually talkative.

As always, the doctor began by speaking directly to Kate. First, she asked a general question about how things were going. Kate said, “Fine.” Then she asked more specific questions, none of which Kate was able to answer. After the last question, the doctor asked if she could get my thoughts. I had sent her an update in advance of the visit, but I mentioned a few minor changes.

Something I said prompted Kate to jump in and say something complimentary about relationship. The medical intern who had accompanied the doctor asked how long we had been married. Kate turned to me, and I mentioned that our 57th anniversary was coming up on Sunday.

Then Kate took the lead. She began what was a lengthy (for a doctor’s appointment) description of my care for her and the closeness of our relationship. It must have surprised the doctor who had never her heard her talk so much.

It was noteworthy to me because it came after several other recent experiences at home when we have had long conversations in which she was the primary speaker. In those cases, everything was fabricated, arising out of an apparent delusion. This time it was because the subject matter is one with which she is very familiar and, thus, about which she is able to speak comfortably, if not accurately.

In a way, it both pleased and tickled me. I say pleased because it’s always nice to hear your spouse say good things about you. I also thought she beautifully conveyed the nature of our relationship to the doctor. It tickled me because she has always expressed her liking for things that are not “overdone.” I’m pretty sure that if she had been an outside observer, she would have said this went several steps too far.

At the time, I didn’t make too much of it, but since then she has been much more talkative. As I often do, I wonder why this is occurring and how much more may be in store. I reported that in the last post and plan to report more on that topic in a post about yesterday.

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.