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.

Food Art

6:45 This Morning. The frying pan was ready, and I was about to put in the eggs. I heard Kate say “Hey.” I went to the bedroom, but she didn’t recall saying anything. I told her I was about to have breakfast and to call me if she needed anything. Just as I reached the kitchen, she called again. I went back to her. She didn’t remember calling me. This happened several times. She would say “Hey” or “Hello,” and I would go to her.

The last time, I asked her if she would like breakfast. She said she would. Before getting up,  she didn’t know who I was and was somewhat suspicious of me. When she asked who I was, I told her. That didn’t appear to relieve her, but she didn’t protest when I helped her out of bed and took her to the bathroom. She held my hand all the way, and we went through our normal bathroom routine. Then I helped her dress.

We went to the kitchen where I gave her some juice and a bowl of blueberries while I cooked the scrambled eggs I had intended for myself. Then I cooked another batch for me. She eats very slowly, so I finished long before she did. As it turned out, she never finished. Her aesthetic interest in the meal took precedent over her hunger.

I first noticed that she had poured the blueberries from the bowl to the plate with her eggs. I didn’t think much about that. She often transfers food from one plate or bowl to another. I think I recently commented on her pouring her juice into a bowl with blueberries and strawberries.

She didn’t stop there, however. For the next 30-40 minutes, she arranged and rearranged her food, the locations of the plate, bowl, napkins, as well as her fork and spoon. She very meticulously picked up one or two blueberries at a time and put them in various places on and off her placemat and the table around it. She wasn’t satisfied with moving just the blueberries. She also picked up bits of the scrambled eggs and carefully placed them on the table and on a napkin.

Midway through her creation, I asked if she would like me to take a picture. She did. I thought that would be the end, but she continued to reposition the items. I took two other photos although they did not turn out to be the last arrangement.

When she was finished, I started to pick up the plate with the eggs and blueberries still on it. She stopped me and said, “They will come in with some money and take it.” I didn’t ask her to explain.

We got up from the table and walked into the family room where I picked up The Velveteen Rabbit. I had only read the title before she wanted to rest. I went back to the kitchen and cleaned up the art. Now I am sitting across from her while she sleeps. She really does need the rest.

Off and she has spoken a few sentences as though she might be dreaming and talking with someone. Once or twice, she looked up at the ceiling and appeared to be talking with someone. And, just a moment ago, she asked who I was. Except for a few moments before she got up, she hasn’t seemed disturbed by her confusion. In fact, she has been a little playful with me. After asking who I was, she asked if I was a girl. I told her I was a boy. She asked my name. When I told her, she said, “You’re a girl. Your name is Carol.” Then she chuckled.

Emotional Times

I always assumed that the last stage of Kate’s Alzheimer’s would involve sadness for me. That is happening now although it is only periodic. It is minimized by the many happy moments we continue to experience. In addition, there are times for which neither happy nor sad seems to be the right word. Those are tender moments when each of us feels a deep sense of love for the other as well as (at least on my part) the recognition that time is running out.

Sad moments for me occur when Kate is disturbed by her lack of memory and any sense of where she is or what she is supposed to do. Most of these experiences are in the morning and have become almost routine. I know how to comfort her, and most of them are not as serious as others. For that reason, I don’t usually feel sad.

Several days ago, she had an experience that was very upsetting to her and to me. It was definitely a sad moment and not one that happened in the morning. She had finished resting in the family room. I looked over at her and saw that her eyes were open. The expression on her face was one of concern. I asked if I could help her. She said yes, and I walked over to her. She wanted to go to the bathroom.

On the way, she continued to act as though something was troubling her. What I initially saw as concern wasn’t about getting to the bathroom. While seated on the toilet, she tilted her head down and held it with her hands. I don’t remember exactly what she said, but she was in tears and distraught. She said, “I feel like I am not alive. I don’t know anything.”

This was as sad a moment as I have felt. I focused on comforting her. I said, “I know you’re not yourself right now, but I want you to know I am with you and will always be with you.” When we finished in the bathroom, I took her to the family room where we took a seat on the sofa. I told her I had something I wanted to show her and picked up a three-ring binder of information about her and her family. I reminded her that she frequently asks me to “write that down for the book” she plans to write about her family and told her that the binder contained some of the information she had wanted.

She responded quickly. Offering comfort and diverting her attention are a powerful combination. I don’t know that it will always work, but, so far, it has.

Saturday morning, we shared a tender moment. I put on a Judy Collins album before trying to get her up. It was still playing when we got to the kitchen to take her morning pills before leaving for lunch. As usual, my focus was seeing that she took her medicine and wasn’t thinking about the music. Collins was singing “Amazing Grace.” The music caught Kate’s attention. She stopped taking her pills and commented on how beautiful it was. With tears in her eyes, she grasped my hand and held it tightly. I put my arms around her. She began to cry, and so did I. We stood there, arms wrapped around each other and enjoyed the moment.

As I reflect, I don’t believe either of us was simply responding to the music. Like many people, we love the song, but we have never reacted to it this way. I believe it was a catalyst that heightened our existing emotions. Music can do that. That may be especially true for us because we have devoted so much of our attention to it since Kate’s diagnosis.

This an emotional time for us. She is struggling with the symptoms of her Alzheimer’s. It is frightening not to know anything. It’s also an emotional time for me. I’m happy when she is happy, but the corollary is that I suffer when she suffers. In addition, I experience something she can’t. Although I can’t predict the future, but I am very mindful that our time together is rapidly diminishing. Music can move us anytime, but it is especially powerful when our emotions are on “high alert” as they are now. I am sure it will continue to bring us comfort in the days ahead.

Feeling Insecure, Dependent, and Appreciative

The past few days Kate has been unusually insecure, at times almost helpless. It has been evident in both her behavior and expressions of appreciation to me. Most of these signs are not new but the degree of her emotions has seemed more intense than in the past.

Thursday morning, I had an appointment for my labs in advance of a doctor’s appointment  later this week. She was with me the entire time except when I stepped into the restroom to give them a urine sample. When I returned, she was very relieved to see me. As soon as we got in the car, she said, “I feel better when I am with you.”

That afternoon, she had an appointment with her stylist for color and a shampoo. I used to sit in the waiting area up front. In the past year or so, I have taken a seat across from her about 10-12 feet away because she sometimes feels uneasy when she doesn’t see me. That worked fine. This time she wanted me to stay closer to her. Once I stood by her, she wanted to hold my hand and did so until time to move back to another chair for the stylist to finish. After making the move, she wanted to hold my hand again.

I was at home most of the time on Friday while the sitter was here. After almost three hours, she called to me and walked into the kitchen. She had a pitiful look on her face and asked, “When will you be able to be with me?” I told her I had a few other things I wanted to take care of, and it wouldn’t be long. She wanted something to eat. I fixed her a slice of cheese toast and a Diet Dr. Pepper. (Those her know her well may recall that she has never liked the diet version, but that’s another change in the later stages of Alzheimer’s. I buy only diet now.) I finished up what I was doing and let the sitter go early again. This is becoming a frequent thing, and it has never kept me from doing anything I had to do. It makes Kate feel better, and that makes me feel better as well.

During the weekend, she was excessive in expressing her feelings about me. She thanked me for helping her so much and emphasized that she couldn’t live without me. Being appreciative is not something new, but the way she has expressed it recently suggests to me that she has a greater sense of the seriousness of her problems than before. I can’t help thinking that having less stimulation during the pandemic has played a role by giving her more time to focus on what she can’t do rather than simply enjoying what she can.

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.

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.

An Update on “Knowing” Me

Tuesday got off to a better start than Monday, but there was a blip that afternoon. Kate had been resting on the sofa, but I could see that she was awake. An old Ronnie Milsap album was playing, and he was singing “What a Difference You Made in My Life.” I walked over to Kate and said, “That’s what I could be saying to you.” She said, “What?” I explained and she gave me a dirty look. I realized that she hadn’t recognized me, but I was startled and said, “Help me understand. Why you did that?” She said, “I don’t know,” a stock answer for almost everything. Then I said, “I think I understand. You don’t know who I am.” She said she did, and I said, “Who?” She said, “The girl across the street.”

I didn’t tell her otherwise and took my seat again. In less than three or four minutes, she made an abrupt change in mood. She looked at me cheerfully and sat up. She started to stand but then picked up two of her photo books and wanted to take them home. She asked me to put them somewhere. I took them. She found several other books she wanted to take with her.

Then she wanted to go to the bathroom. She gave me a smile and cheerfully spoke to me as though the previous incident had never happened. I am sure she had no recollection. I showed her to the bathroom. When she was finished, I thought we would get ready for dinner. Instead, she got in bed and pulled the sheet over her. I was concerned that she might not get up, but she surprised me. Only a few minutes passed before she got up on her own, and we had dinner. She seemed just fine. That didn’t mean that she recognized me as her husband, but she was as friendly with me as she normally is. The following day we had a similar experience that was just as short-lived.

At least twice yesterday, she spoke harshly to me and then apologized. One of those times we were in the car, and she said she didn’t know why she had responded that way. I don’t recall her exact words, but she had a concerned look on her face and said what I interpreted as a recognition that something is the matter with her that causes her to behave this way. That fits with so many other signs of her self-awareness.

I’m not quite sure what to make of this. It could be like other things that occur once or twice and not again, or it could be the beginning of a progression of her Alzheimer’s that only gets worse. My guess would be it’s something that will get worse though I think her dependence on me and the positive feelings derive from that relationship will last a long time. At least that’s what I’d like to believe.

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.