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Tender Moments

I have a Twitter friend whose wife has early onset Alzheimer’s. She is in memory care, and it is only recently that they have been able to get together. The other day he posted a video of the two of them as he read Love You Forever. As he read, she leaned over and kissed him (through her mask, of course). His tweet said, “Special moments are not always captured but this one was.”

This struck a chord with me because Kate and I have so many moments like this that go unrecorded. Sometimes I try to describe them, but my descriptions never fully convey the feelings of those moments. The past few days they seem to have been more frequent than usual.

Two days ago, I posted a tweet about one of those moments that occurred at lunch on Sunday. Only two other tables were occupied in a restaurant that seats over 200. While enjoying the quiet and comfort of having the restaurant almost all to ourselves, Kate said, “I want you to know how much I appreciate all that you do for me.” I said, “I do it because I love you.” She said, “I love you too. <pause> Who are you?” It was a very tender moment that some might have taken as sad, but it was a special time for both of us.

We had a similar, but longer, experience the next morning. Kate woke up early. I was only twenty minutes into my morning walk (inside the house for those of you who are new to this site). When I got to her bedside, she was sitting on the edge of the bed, her mind seemed to be a complete blank. She said, “What am I doing here?” I said, “This is your home. This is where you live.” It didn’t take long to tell that she didn’t know me and that she was in a deeper fog than usual; however, she wasn’t frightened as she is sometimes. She was just confused about where she was, who she was, and who I was.

I told her we had been friends in college and that I could help her. That didn’t totally reassure her, but I was able to take her to the bathroom without her having any reservations. Once there, she didn’t know what to do. I explained that she should take off her underwear and sit on the toilet. She was still a bit unsure of me and didn’t feel comfortable doing that. I was, however, able to get her to brush her teeth. She began to feel somewhat more at ease with me, and I took her back to the bedroom to get her dressed. She was a little hesitant to let me help but consented. Throughout the process she seemed to get more comfortable. Several times she asked who I was. I gave her my name and repeated that we had met in college and been together ever since.

I took her to the kitchen where I poured her a glass of apple juice, and she took her morning medicine without a problem. I also turned on a Barbra Streisand album and selected songs that I know she especially likes. She commented on how much she liked the apple juice. She seemed pretty much normal though she continued to periodically ask who I was.

I fixed her some cheese toast. She liked it and wanted more. The music was still playing when she finished eating. Streisand and Neil Diamond were singing “You Don’t Bring Me Flowers Anymore.” Kate had closed her eyes and was engrossed in the music. She even mouthed some of the words.

When the song ended, she opened her eyes. Something across the table caught her eye. She said, “This is a nice room.” (Most of the time, she doesn’t know she is in her own home and admires it as though she is visiting a friend’s house or staying in some type of commercial lodging.)

I said, “Beautiful things. Beautiful music. <pause> And beautiful feelings.” She looked at me, nodded, and repeated, “Beautiful feelings.” Then she extended her left hand to me. I put my right hand on hers. She put her right hand on mine, and I followed with my left hand on hers. We sat there quietly for 5-10 minutes without saying a word, just listening to the music.

Kate still had several small pieces of cheese toast on her plate. She asked if I could fix more and that we could share. I did. The music ended, and I put on another album that we have always liked. Then we sat quietly enjoying cheese toast and the music for another twenty minutes or so before adjourning to the family room. Before getting up, she said, “I feel better.” I said, “I do too.”

Did she know who I was? I don’t know. I doubt it. What is important is that we had shared a special moment together. As Kate’s care partner, I’ve read a good bit about caregiving. I’ve learned a lot though never enough. A number of things have seemed especially significant to me. One is the importance of living in the moment. Another is mindfulness. I think this particular experience is a good example of both. I try to take advantage of moments like this and am “mindful” of how much each of us cares for the other and that there is a limit on our time together.

The day began with a rocky start, but in a rather short period of time evolved to that tender moment. It wasn’t that I had done anything of great significance. That wasn’t necessary. I just helped her get ready for the day, served her a breakfast she enjoyed, played music I know she likes, and gave her time to feel at ease with me.

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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.

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Change is Ever Present, But Some Things Remain the Same.

Much of my recent posting has focused on the changes occurring in our lives. That is true, but I don’t want to mislead you. Some of the best things are still with us. I can sum it up by saying this. Kate continues to be the same kind, thoughtful person she always was. As a result, the strength of our relationship hasn’t diminished in any way. In fact, I would say it is stronger than ever.

Last week, I watched a video lecture by David Brooks recorded during his visit to Chautauqua in 2018. A section of his talk dealt with love and referenced the following quote from Corelli’s Mandolin by Louis de Bernieres.

Love itself is what is left over when being in love is burned away. And this is both an art and a fortunate accident. Your mother and I had it. We had roots that grew toward each other underground, and when all the pretty blossoms had fallen from our branches, we found that we were part of one tree and not two.

I think this applies to our relationship as well as most other successful marriages including those of Kate’s and my parents. We had a good marriage before Alzheimer’s, and our roots “grew toward each other.” Now I have discovered that we are “part of one tree and not two.”

There are a number of reasons “Living with Alzheimer’s” has been less stressful for us than for many others. The nature of our relationship has to be one of them, and it has not deteriorated. That could change at any time. Alzheimer’s has changed our lives significantly, but I remain optimistic.

There are many illustrations of the way we have handled the trials accompanied by this disease. Let me mention several that have occurred in the past week.

One night early last week, I had just gotten out of the shower and was about to take a seat in a chair on my side of the bed. This is a relaxing time of the day for me. Kate was sitting up in bed while watching a YouTube video of Rachmaninov’s Piano Concerto No. 2. I assumed she was more engaged than usual because she was sitting up. Normally, she is lying down with her eyes closed and listening. Before I could sit down, she motioned to me to join her in bed. It was about 45 minutes before I would normally go to bed, but I got in bed.

It turned out that she was experiencing two conflicting emotions. She was enjoying the music, but it was also a moment when she was disturbed by not knowing “anything.” She wanted my hand and held it firmly as she leaned against me. I felt it was another time when talk was less important than simply being with her. Within 10-15 minutes, her anxiety was gone. We watched the entire concerto, and she wasn’t sleepy. We followed that by watching a performance of Tchaikovsky’s Piano Concerto No. 1. We were much later getting to sleep than usual but it was another case in which music and the comfort of our relationship solved a problem.

One morning two days later, she woke me around 5:00. She had apparently had a dream in which she had some obligation that morning. She wanted to know what time she had to be there. I told her I didn’t know of anything that she needed to do that morning and that she could relax. For a very brief moment, that satisfied her, but then she asked again, and again, and again. Finally, I suggested that I put on some soft music. I have a variety of music for times like this and turned on the audio. Then I put my arm around her and held her for over thirty minutes. During that time, she relaxed and forgot all about her obligation. She wasn’t asleep but at ease, and I got up for the day.

As she grows increasingly dependent, her desire to be with me seems to increase as well. The past few days she has talked about liking to be with me. On at least one of those occasions, it followed an afternoon with the sitter even though I was in the house most of the time. Before the sitter arrived today, I mentioned that I was going to the grocery store. She told me she didn’t want me to leave. I told her I wouldn’t be gone long and wasn’t going to leave right away but would be in the kitchen taking care of a few things. She accepted that, but the look on her face suggested she didn’t want to.

Yesterday morning was one of those times when she didn’t recognize me as her husband or know my name, but she asked to hold my hand. She said she didn’t really need it, but it made her feel better. She wanted to go home, so we went for a ride in the car. It wasn’t long before she said, “I don’t know how he does it.” She said a few related things, and I asked who she meant. She looked at me and said, “You.” This was far from the first time she has referred to me or herself in the third person. When we returned home, she wanted to tell me something but couldn’t express it. I’ll never know exactly what it was, but I got the impression she wanted to tell me what it feels like not to know anything. I don’t know that I would be able to express it either. I do know that she hasn’t forgotten me as a person whose company she enjoys and on whom she is very dependent.

As an aside, I think she has remembered my name and that I am her husband more often as her dependence has increased. When I got home to relieve the sitter two days ago, the sitter told me Kate had asked about “Richard” off and on the whole time I had been gone. Interestingly, while we were eating lunch today, she asked, “Where is my husband?” several times. We had been talking, but there were moments of silence. She apparently looked at me but did not recognize who I was and felt uneasy. Yes, changes are occurring, but some very important things remain the same. Our relationship, music, her photo books (especially the “Big Sister” album), and The Velveteen Rabbit are among them.

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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.

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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.

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A Shift from Confusion to Enjoyment

It is 2:00 Sunday afternoon as I begin this post. Kate and I returned from lunch an hour ago. As is her custom, she took her place on the sofa in our family room and has been resting ever since while I busied myself with several tasks on my laptop in a chair across from her.

She was asleep for almost an hour before waking and looking through a photo book our son Kevin had made of a trip we made to New York City in 2015. We had taken him and his youngest son along with our daughter Jesse and her twin sons. It was the last big trip we took. Kate doesn’t often browse through the book, and I was surprised to see her so engaged with it. She talked to herself all the way through it. I wasn’t clear whether she was awake or asleep, but she enjoyed herself. I didn’t pick up everything she said. It didn’t appear that she recognized it as a book with photos of people she knows (knew?). Her comments were just about what she saw. When she finished, she closed her eyes a few minutes then opened them and said, “I like this place. I really really like it. Ahhh.” I caught her eye and said, “You look happy.” She said, “I am. Are you?” I said, “I’m very happy,” and I was.

The day didn’t begin this way. When I first heard her this morning, it was 9:45. She looked like she was contemplating whether or not she should get up. I said, “Good morning. It’s good to see you.” She didn’t give me the smile I was hoping for. Instead, it was a look that suggested she had no idea who I was and wasn’t sure she wanted to know.

It didn’t take long to discover that she seemed wide awake but unsure of what she should do. I told her it looked like she was about to get up and said I would be glad to help her. She wasn’t sure. I told her I could get her clothes for the day and make breakfast for her. She hesitated. Then she asked me if I would take her home. I told her I would. That was all she needed.

I got her up and to the bathroom without any difficulty. She was perfectly comfortable with me throughout the bathroom routine and getting dressed although she never gave any sign of affection or strong feeling about me.

The first sign of happiness came when we walked into the family room. She first stopped to look at the African violets. Then she saw the poinsettias that are still healthy, if not completely red, after six months. Next she took interest in her ceramic cat and then a photo of our son when he was about 8 or 10. She was beginning to cheer up.

By the time we got to the kitchen for breakfast it was almost 10:30. I decided to take advantage of her being up early and get an early lunch at Andriana’s; therefore, I only gave her juice and a small bowl of blueberries and raspberries. We have three anniversary cards on our kitchen table. At almost every meal she likes to look at them and have me read them to her. It is interesting that even when she doesn’t realize that I am her husband, reading the cards does not strike her as a surprise. That was the way it went this morning.

While she was eating, she seemed to become increasingly at ease. She hasn’t mentioned my taking her home again. That continued on the drive to the restaurant. We enjoyed our time together at lunch. At one point, our server introduced us to her 11-year-old daughter who happened to be there. As they walked away from the table, Kate said, “Mr. and Mrs.? Does that mean . . .” She didn’t finish the question. I said, “Yes, we are husband and wife.” She was quite surprised. I was even more surprised that she remembered the server’s referring to us as “Mr. and Mrs.”  I told her we had just celebrated our 57th anniversary a week ago. Then I said, “I hope that doesn’t bother you.” She said it didn’t, and it looked as though she were telling the truth. This led to a wonderful conversation about the good times we have had.

This kind of transition often occurs in the morning. It begins with her having a blank slate with respect to her recollections of anything. That leads to a feeling of concern that is sometimes very mild. Other times it is more intense. In every case, she ultimately comes out of it as she is exposed to more experience with her surroundings. She begins to feel at home.

As I close this post, she is once again looking at the NYC photo book. She just said to herself, “Isn’t this wonderful? <pause> Let’s see who all is in here. <pause> Okie Dokie. <pause> You’ll love it. <pause> Let’s see. Just a minute. Let me see. Hey.” She is obviously happy, and I am happy to see her enjoy it by herself. That is a rare event.

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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 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.

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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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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.