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Reflections on Living with Alzheimer’s: Part 2

In my previous post, I talked about our pre-diagnosis experiences and my belief that they have helped us deal with our post-diagnosis experiences with Alzheimer’s. Many other things we have done since the diagnosis have also been valuable.

One is the way we responded at the beginning and continued throughout our journey. We both accepted the diagnosis. We were helpless to change that. Instead, we directed our attention to “What next?” Planning was a critical first step. We talked a lot during the first few weeks. We didn’t arrive at a detailed plan, but we set a goal that has guided us from the beginning to the present time: to enjoy life and each other as long as we were able. We began binging on the activities we had most enjoyed throughout our courtship and marriage.

That included going to more movies and theatrical productions. We took advantage of our local theaters as well as those in three other cities that were within a 2-hour drive from our home. We attended many musical events locally and out of town. We also traveled domestically and internationally.

We made a change in our dining habits. At first, I tried my hand at fixing simple meals and bringing in meals from some of our favorite restaurants. I quickly discovered that I didn’t like fixing meals or cleaning up afterward, so we started eating out for lunch and dinner. That continued until the beginning of the pandemic in March 2020.  We had eaten out more than 6000 times since her diagnosis. In addition to eating out for our daily meals, we went to a local Panera Bread each morning where Kate got a muffin. After lunch, we went home for a break where she rested. Later in the afternoon, we went to the café at Barnes & Noble where we spent an hour or so before going to dinner.

We did all this for convenience and pleasure, but the most important benefit was totally unanticipated. We were never socially isolated. We often ran into friends and acquaintances. We also became better acquainted with the servers and managers of the various establishments as well as other regular customers. Doing all of these things meant we led very active lives. We were living well, and we were achieving our goal of enjoying life and each other.

It wasn’t until 2018 (7 years after Kate’s diagnosis) that I understood why we had gotten along so well. That’s when I read Dementia Handbook by Judy Cornish. She introduced me to the significance of rational and intuitive thought and its relevance for people living with dementia.

Rational thought deals with the kinds of things we learn from our parents, teachers, and many others we encounter. These include the rules of behavior as well as factual knowledge like language, history, math, spelling, names of people, places, things, etc. Intuitive thought involves experiential learning that occurs directly through our senses – touch, taste, smell, sight, and hearing. We put so much emphasis on rational thought that it’s easy to overlook the significance of what we learn experientially. That is probably why so many people believe that all is lost with dementia. That’s a big mistake. As Cornish points out, intuitive thought provides us the ability to enjoy the world around us like music, art, and the company of other people.

When I learned this, I immediately recognized that Kate and I had done just what Cornish suggests. When we focused our attention on enjoying life that led us directly to the things that Kate could appreciate even as her rational thought declined. Music, theater, dining out, travel, as well as time with family and friends were all things she could enjoy.

That is not to say that we could continue all of these things while “Living with Alzheimer’s.” For example, she reached the point at which she could not follow the plot of movies. Interestingly, the last two movies that she really enjoyed were Won’t You Be My Neighbor which was about Mr. Rogers,and RBG, a documentary about Ruth Bader Ginsburg. Both films were filled with humor and touching emotional moments that she could appreciate.

All of these things have enabled us to live joyfully with Alzheimer’s. Best of all, we continue to do so at this late stage of the disease. I firmly believe the improvement Kate has experienced over the past year relates to the attention she receives from the residents and staff of our retirement community. Of course, our primary caregiver and I make sure she gets the same attention at home. This attention is something else that she can enjoy via her intuitive thought/ability.

You might ask, “How long will this last?” I ask myself the same question. The answer is I have no idea. One thing I do know. We will continue to enjoy life and each other as long as we are able.

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Selfcare (With a Lot of Help From Others)

Despite the challenges and low moments while “Living with Alzheimer’s,” I’m upbeat most of the time. That is only because I have lots of help. Most of that involves my contact with other people. I have remained as socially active as I could since Kate’s diagnosis eleven and a half years ago. Since our move to a retirement community a little over a year ago that has increased. The activities of the past ten days are a good example.

I’ve always been a creature of habit and have a routine for each day of the week. Most of those involve engagement with other people. That begins on Monday with my weekly Rotary lunch. I’ve been a member since 1983, and it’s good to connect with people I have known for quite a few years. I also eat out (outside the grounds of our retirement community) for lunch on three other days of the week. Every Tuesday and Sunday, I eat lunch at two different restaurants at which Kate and I ate regularly for eight or nine years before the pandemic in March 2020. Since she has been unable to get out, I go alone; however, I know the managers and staff, and I am usually served by the person who has served us/me for years. Since our move, I have found a new spot for my Saturday lunch. As a regular, I’ve gotten acquainted with the owner, my server, and a few others who work in the kitchen.

The other three days of the week I have lunch in the café downstairs in our building. It’s a very friendly community. We’ve lived here just over a year, and I’ve eaten alone fewer than five times. On the way in, I usually see someone who is already seated and join them for lunch. If I start out alone, someone joins me.

Some days I find myself in more conversation than expected. One of those occurred last Thursday. In advance, I had invited a couple to join me. We were seated only a few minutes when someone else asked to join us. When we finished, I went down to the main dining room to return a cloth napkin that Kate had brought back to the apartment the night before. As I entered, I saw another couple who had just been seated for their lunch. They asked me to join them. When I told them I had just eaten, they said, “Why don’t you have a cup of coffee with us?” I accepted their invitation. We spent the next hour in conversation.

Every afternoon at 3:30, the caregiver and I take Kate to another café on the grounds for ice cream. The seating is beside the main hallway that links all the buildings, eating venues, meeting rooms, a gift shop, and a hair salon. We spend an hour there and have conversations with residents and staff as they go from one place to another. I think this is good for Kate and know it’s good for me.

At 4:30, we go directly from having ice cream to dinner. That’s yet another time for social contact. That begins with the staff since there aren’t that many other residents who eat as early as we do. Everyone on the staff knows all of the residents. They treat us very well. During any given meal, we may have as many as 5-10 different staff drop by our table to say hello and often chat for a few minutes. As other residents arrive, some of them stop by our table. As we leave, we stop at several tables to do the same for others who arrived after we did.

That’s the daily routine, but there are also many other impromptu encounters. This past Sunday, the server had just brought my coffee when a couple I know was seated at a nearby table. They asked me to join them as they have done on a couple of other occasions. It had been a while since I had seen them, so I accepted. All three of us are big talkers, and we spent the next hour and a half talking and eating.

There are always other unanticipated events that keep me going. Two of those occurred during the past two weeks. One of those involved a new caregiver. She replaced one who was quite good with the basic CNA (Certified Nurse Assistant) skills but not so good with “Tender Loving Care.” Our new caregiver is adequate with the basic skills and very good with TLC. The second day she was with us I walked into the living room where Kate was looking at the caregiver and smiling. They were holding hands. That never happened with the previous caregiver. I was elated.

As you would expect, how Kate is feeling has the greatest impact on how I feel. Her Alzheimer’s, Covid, and stroke have left her less upbeat than she was before. She rarely says a word until mid-afternoon; however, some days she is more cheerful than others. She’s had a number of days like that during the past two weeks.

I shouldn’t close without mentioning the support I get from those who read this blog as well as my followers on Twitter. You have often given me words of encouragement at moments when I needed them most.

It is true that I am not as active in the local community as I used to be, and I don’t participate in many of the events on the grounds of our retirement community. Nevertheless, the things I outlined above boost my spirits considerably. I’m living well and grateful for that. I know of many caregivers who are not so fortunate.

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Happy Moments and Challenges

I often fear that when I post stories of the more challenging (troublesome? Disturbing?) experiences Kate and I have, you may feel our lives have become gloomy. Similarly, when I post our good ones, I fear that I am failing to convey the trials we face. The truth is that both the good and bad are happening, sometimes in very close proximity. I want you to know about both. Beyond that, I want you to know that our Happy Moments continue to outweigh the more difficult ones.

This morning (See below.) we have had contrasting experiences, and it’s only 9:55. It began when I woke up a couple of minutes past 6:00. As I started to get out of bed, Kate said something to me. She seemed wide awake . . .

The paragraphs above were written about 9:45 Wednesday morning. It is now 2:58 Wednesday afternoon. Since then I have been occupied with Kate, some household chores, and checking email. In a way, the break was fortuitous in helping to make my point about the mixture of experiences we have during the day.

Let me pick up where I left off. She seemed wide awake when I started to get out of bed. More importantly, she seemed perfectly at ease although she did ask me what she should do. I said that it was a couple of minutes past 6:00, and she should probably go back to sleep for a while. That satisfied her, and I went to the bathroom.

Moments later I heard her say, “Hey.” I opened the bathroom door and saw her standing there. She needed to use the bathroom. As is often the case, she was very dependent on me. Since she was up so early and cooperative, I suggested it would be a good time for a shower. She didn’t object.

When we got out, I started to dress her. She wanted to rest before we could finish. That seemed like a good thing as I hadn’t done anything to get myself ready for the day. I left her in the bed while I went to the bathroom, dressed, and fixed breakfast.

I had just put my breakfast on the table when I heard her call. I took my plate of scrambled eggs with me to see what she wanted. She was ready to get up. She was in a good humor, and I had no trouble getting her ready. While helping her, I ate my eggs and gave her a bite. She loved it.  I was glad because that gives me another breakfast alternative for her.

She was in an unusually cheerful mood when we left the bedroom for breakfast. She was excited about the flowers and trees in the back yard. At breakfast, she was very talkative. Everything pleased her. The sun was shining brightly, and she loved looking out the kitchen window at all the “green” in our neighbor’s yard. She raved over the apple juice, blueberries and strawberries, and her eggs. We were off to a great start. I had already thought about writing a more upbeat post, and she was providing all the material I needed.

After breakfast, we went to the family room where I picked up The Velveteen Rabbit, and we sat down to read it. She has never enjoyed it more, but she did look tired when we finished. I asked if she would like to rest. She said she would. That’s when I got my laptop and sat in a chair across from her to write this post.

She didn’t rest long. She began speaking to someone who had apparently appeared in a dream. When she started to get up, I walked over to her. She greeted me warmly as though I were a guest and not her husband. I asked what she wanted to do, and she said she was going “over there” and pointed to the back yard. It is most unusual for her to go out to the patio and back yard. I was pleased.

We spent about fifteen minutes walking around to see all the plants that she admires from inside the house. She was excited to see everything up close. It was another high point of the day.

It was time for lunch when we came back inside. I called in a takeout order from a place nearby. Everything went well until near the time we finished eating. She seemed a little disgruntled and wanted to go home. I was hesitant to do that since the sitter arrived only a few minutes before. I told her we were at home but quickly recognized that wasn’t going to work. I told the sitter I was going to take her home. She remained at the house while we took a 20-minute drive.

Until then, our drives “home” had worked well. That wasn’t so  that day. Before leaving the house and in the car, Kate asked several times if I knew where she lived. Each time, I assured her I did. She seemed quite suspicious. Then as we came within a block of the street where I was to turn for our house, she said, “This doesn’t look right.” She repeated this after I made the turn. When she saw the house, she didn’t believe it was her house. She was hesitant to go in and insisted on my going in first. It seemed to me that she recognized the house as familiar but knew it was not “her” house. Since this was the first time she did not accept “our” house as “her” home, I wonder what will happen next time I try the same thing. (I got to find out yesterday afternoon. It went well.)

When she saw Mary, she didn’t recognize her at all; however, she gave her a warm welcome. I started to go to the kitchen, but she wanted me to stay with her. I sat beside her on the sofa and picked up The Velveteen Rabbit again. She shrugged but listened. She didn’t respond at all the way she usually does and had earlier that morning; nevertheless, I could tell she was following the story. She got tired before I finished and put her head down on the pillow. I finished the book while she rested. I went to the grocery store and back. I was at home the rest of the time the sitter was here.

After Mary left, I decided we needed a boost for the day. I took Kate to Casa Bella for dinner. We had a nice meal and returned home for the night. All was well. It wasn’t our best day, but it had some very good moments. I felt good.

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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.

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Lots of Unpredictable Things, But There are Daily Patterns

I have come to appreciate the experiences of other caregivers who report the unpredictability of people with dementia. After seven or eight years of a rather steady daily routine, I don’t claim to be able to predict what Kate will be like from one moment to the next. There is one pattern, however, that seems to have emerged. Mornings are the most challenging times. The biggest problem is Kate’s waking and being confused or frightened. Thankfully, this doesn’t occur often, but it is strikingly different and more unpleasant than the way she has been in the past.

My way of making sense out of these experiences is to think how I would feel if I woke up and didn’t know where I was, who I was, or what I should do. Fright seems a natural reaction. It also makes sense to me that after being asleep all night, Kate hasn’t had any external stimulation that would give her a sense of comfort. Once she gets up and is exposed to the house, to me, and our routine, she feels more at ease. This usually occurs before we leave for lunch.

Some days I have to work harder, but very gently, to get her up and oriented. For example, yesterday morning I awoke about 5:00 and quickly decided to sleep another hour before getting up. At 5:45, Kate said, “Who is here?” I said, “I am.” She said, “Who are you?” I said, “Richard.” She didn’t say anything. I asked what I could do for her. She said, “I’m scared.” I asked if she could tell me what had scared her. She said, “I don’t know.” If it were not for our previous experiences and what I have learned about dementia, I might have probed to see if I could identify the problem. As it was, I know that when she says, “I don’t know,” I’m not likely to learn anything by asking questions.

I told her I wanted to help her. She asked my name again. Knowing that this might be a day when she sleeps later than usual, I asked if she wanted to go to the bathroom. She said she did and asked where it was. I told her I would show her. She was unsteady and confused.

When I got her back to bed, I asked if she wanted me to stay with her. She did. I got my laptop and took a chair beside the bed. I also played some relaxing music while she went back to sleep. Then I went back to the kitchen. It was over an hour before I went to the bedroom. I told her I wanted to invite her to lunch and asked if she would like to go with me. She did and got up and dressed rather easily. I think the key was not pushing her. It might not have been as easy for me if she hadn’t gotten up so early in the first place. We had plenty of time. We were the first people to arrive at the restaurant. That was a first.

She is generally all right in the afternoon, but in the past few months, she has experienced more delusions and/or hallucinations. This typically happens after she has been resting a while. I think that while resting she is drifting in and out of sleep and appears to have had a dream. She often talks to someone who is “not there” or to say something to me that suggests I have experienced whatever she has just experienced. The good thing is that she isn’t disturbed at all. Sometimes she is especially happy. That often happens when she believes she has an hallucination involving someone she apparently hasn’t seen in a long time. I say that because of the look on her face and the sound of the voice.

We had an experience yesterday afternoon that is a good example. She had been resting for more than two hours, and I walked into the kitchen for a few minutes. When I walked back into the family room, she got a big smile on her face and pointed to me. I said, “Well, I guess you recognize me?” She said, “Who are you?” I said, “Me.” She asked my name, and I told her and asked if it rang a bell. She wasn’t sure. I said, “I bet I know your name?” She said, “What?” When I told her, she said, “How did you know?”

I walked over to her and told her I knew a lot about her and her family. I don’t recall exactly what she said after that, but she conveyed that she didn’t know the words or how to say what she wanted to express but wanted to learn. She hoped I would be able to stay around so that she could learn from me. I told her I would be happy to teach her. I also said that she had a number of photo books with lots of information about her father’s and mother’s families as well as one her brother had given to her.

By then, it was time for dinner. I told her we could look at some of the books after we got home. As it turned out, she was tired and wanted to get ready for bed. She had forgotten about the books, but we will soon look at them as we do so often.

My explanation for this experience is similar to what I said about her morning fright. She isn’t frightened, but she has gone through a period of time (as long as two hours) when we have had minimal interaction. It’s not quite like the lengthy overnight absence of external stimulation, but it results in a sense of confusion. It’s as though the circuits of the brain have been asleep and need time to wake up.

Our evenings between returning home from dinner and going to sleep are clearly the most predictably happy and relaxed times of the day for both of us. By the time I get in bed, she has been there at least an hour. Except on the few occasions when she is sound asleep, she is always glad to see me. We often comment on having a nice day and express our love for each other. Then we peacefully drift off to sleep.

I believe the predictability relates to the fact that we have no commitments after dinner. It is simply a time to relax. I do try to keep to a routine bedtime for both of us, but that seems to occur without having to work. For at least an hour, I play YouTube music videos on the TV. Then I put on even more relaxing music on our audio system. It’s a peaceful time of the day.

Looking to the future, I suspect there will be a time when we start having lunch at home and, perhaps, separately. Doing so would prevent rushing her. Right now, I believe it is more important for us to maintain our active lives outside the home. In the meantime, I will continue to make the mornings as free of stress for Kate as I can. That means waking her gently and offering her comfort when she needs it.

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This Morning

Last night I picked up an email from my friend Tom Robinson. He asked how I managed to remember the different experiences Kate and I have and especially the times they occur. In my reply, I confessed that I forget a lot. So much is happening now that it is impossible for me to remember everything. I really wish I could do a better job capturing our conversations. They would be much more effective in telling our story than my personal descriptions, but it is becoming increasingly difficult for me to remember such details. There are some occasions when I am able to write shortly after a particular incident. Such is the case right now.

It is now 8:19 Friday morning. I was up at 6:25 and had finished breakfast. It looked like this would be a morning when I would be able to walk and listen to my book. As I was preparing to do that at 7:50, I set the video cam on the island in the kitchen. When I did, I saw that Kate was about to sit up. When I reached her, she was sitting on the edge of the bed. She looked up at me and smiled. I told her it was good to see her and, especially, to see “that smile.”

As we walked to the bathroom, she said, “I sure am glad to see you.” Her tone of voice conveyed a sense of relief. It was clear that she was quite confused although she seemed to recognize me. As we returned to the bed, she repeated how glad she was to see me. She said, “What do I do now?” I told her it was still early, that I thought she should try to rest a little longer. As I pulled the covers over her, she said, “Where are we?” I told her we were in our house in Knoxville, Tennessee. We went through these same questions two or three times. Then I asked if she would like me to bring my things into the room and sit with her. She said, “Oh, yes.” That’s where I am and plan to stay until it she is asleep. Then I will slip back to the kitchen. In the meantime, I put on a Jason Tonioli album entitled Finding Peace. Most of the pieces are just piano and violin, and, as the title suggests, they are very peaceful. It is playing softly in the background. If it doesn’t help Kate get back to sleep, it may do it for me right here in my chair.

There is nothing special or particularly unusual about this experience. In that respect, it is a good one in that it captures a rather ordinary part of our lives. It’s not always like this. Sometimes she is much more disturbed by her confusion. Other times less so. It is unusual, however, for her to want me to stay with her. That is a sign of greater insecurity than most days.

There is something else about this morning that is typical. It is the way we relate to each other. She depends heavily on me and looks to me for guidance. This is true most of the time, and that makes caring for her much easier for me. It’s not always like that. There are times like two days ago when she wanted to be independent and resisted my help. That was a rough moment and only subsided when I let her take charge. That helped to re-balance the relationship. When she is on her own to dress, it isn’t long before she asks for my help. That works because I am following her rather than directing. In moments like this morning, she is ready to turn everything over to me. Making a decision about what to do can be a challenge when your mind is completely blank.

The last song on Tonioli’s album, Brahm’s Lullaby, is playing. Kate is now sound asleep. I think I’ll take my morning walk around the house (inside, of course) and listen to my book.

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Getting Along

Over the past week, I’ve had several experiences that remind me of how difficult it can be to care for someone with Alzheimer’s or some other form of dementia. I have tried not to dismiss the challenges that I have faced, but my experience has been different. Kate and I continue to enjoy ourselves even in this last stage of her Alzheimer’s. I sometimes feel awkward about saying this because I know so many others are pulling their hair out.

I’ve reflected a lot on what makes our situation so different. I receive a lot of credit from other people, and I do believe I have done a good job caring for Kate. On the other hand, I don’t believe there is any one thing that explains why we have gotten along so well. Most of it is simply luck.

In a conversation with another caregiver yesterday, we compared notes on how we were adapting. She experiences far more frustrations than I do. When I learned more about her situation, I could see that I would probably be as frustrated as she if I were living her life. It was clear to me that it is easier to care for Kate than it is for other people with Alzheimer’s. She retains a kind disposition and has a sense of humor that helps us. A couple of days ago, I rushed her as I helped her dress. She told me to wait a minute in a very stern voice. I said, “I’m sorry. I’m bad about that. I’d better be careful or you might fire me.” She said, “If I could, I would.” I paused a second before responding. She laughed and said, “I gotcha on that one.” We both laughed and continued getting her dressed. This kind of thing occurs quite frequently every day.

It’s not just humor that gets us through things. We are both “pleasers.” Neither one of us wants to hurt the other. Of course, sometimes we do. She is very good at letting me know when I do something that bothers her, but she usually does it in a kind way. After she tells me not to do something, she often says, “But you are getting better” or “I know you mean well.” These may seem like little things, but they work for us.

On another subject, we had a good experience at Casa Bella on Thursday night. This was the third night since the death of the man with whom we have shared a table for the past six or seven years. Each of these times several members of his family have sat at the table in support of his widow who seems to be adjusting well. We were seated at a long table with ten other people. I was concerned this might not work well for Kate, but the conversation broke into smaller groups. We had a good time, and she especially enjoyed the music.

I think we might go to a movie, Linda Ronstadt, this afternoon. That would be the first one in months and only the second one in over a year. It is a documentary and supposed to be a “feel-good” movie. The last two movies she liked, RBG and Won’t You Be My Neighbor?, were the same type. I hope this one works.

Have a great day. I plan to do the same.

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Art Appreciation and Kate

Many times I have given examples of Kate’s interest in “things of beauty.” Most often, this has involved all the “green” (principally trees, but also shrubs) she sees wherever we are, at home or on the road. It also includes the paper doilies she occasionally brings home from one of the restaurants we frequent. She keeps them in several places in the house. About half a dozen are on her bedside table where she enjoys them when she wakes up in the morning.

I have been able to appreciate what she sees in each of these things, but once in a while she surprises me. She did that just before the sitter came yesterday. I was seated across the room from her when I heard her say, “This is beautiful.” I thought she might be talking about the orchid plant on the table next to her. When I looked, I discovered that she was entranced by the remote control for the TV.

For years, I have had a periodic discussion about art with my two email friends from college, Tom Robinson and Bruce Morton. Tom is a retired philosophy professor, and Bruce started on his PhD in philosophy before developing other interests, one of which is photography. Our discussions revolve around the same question. “What is art?” I have always held the position that art, like beauty, is in the eye of the beholder. I know mine is a pretty loose definition, but it seems to work for me given the variety of creations that are officially called art and displayed in the world’s finest museums.

The beauty Kate saw in the cable TV remote was something of a stretch even for me, but I hold to my position. In fact, I think it’s an excellent example. Most, if not all art, seems to possess qualities that involve color, shape, texture, and subject matter. When I took a more careful look at the remote, I began to consider these qualities. I could see how she looked at it as a thing of beauty. It has forty-four individual buttons of different shapes, sizes, and colors and organized around different functions. The mount on which these buttons are located is a reasonably attractive shape and presents a contrasting color for the buttons themselves.

Yes, I think the remote is, or could be called, a work of art. I am sure that it’s designers would agree. They no doubt spent a long time working to make it both functional and attractive . It’s really an iconic symbol of our time. If someone like an Andy Warhol were to have painted a “portrait” of one in much the same way he painted the Campbell soup can, surely many would see if as art. I know I’ve seen stranger things at museums like MOMA in New York.

Of course, I am just playing fun and games with this topic, but there is a serious side to it. That involves the ability of people with dementia to see and appreciate things that most of us overlook. Kate’s life is filled with those. Wherever we go, she sees things that catch her attention. It is usually for something more understandable than a remote control, but also something that I was about to walk by without appreciating. Increasingly, I have come to believe that in the absence of her rational abilities, her ability to sense the world around her has increased to compensate for that loss. There may be a lesson in this for all of us without dementia. It’s a wonderful world, especially when we stop and consider the little things we take for granted. They may be of greater value than we thought.

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Another Good Day

Kate woke up at 8:00 in a good humor and appeared to recognize me. At least she greeted me with a smile. As we entered the bathroom, she said, “Excuse me, I don’t remember your name.” She asked just the way she would have done with a casual acquaintance. I said, “My name is Richard, and I am your husband.” When I said, “husband,” she looked surprised and doubtful. When this happens, I shift gears. I said, “Let’s say we’re good friends. How’s that?” She said, “Yes, you’re a good friend.”

While on the toilet, she asked my name at least two or three other times and again as she started to brush her teeth.

Her usual pattern would have been to return to bed, but she was ready to get dressed. I was happy about that. I had arranged for the sitter to come at 11:30 instead of 1:00 because I had a United Way meeting at noon. Her being up early provided enough time to get her a muffin at Panera, pass a little time there, and easily get back home before the sitter’s arrival. As it turned out, we got home forty-five minutes before the sitter.

While at Panera, she said, “Do you have a girl friend?” I hesitated a moment and then said, “I would say that you are my girl friend.” With tears in her eyes, she said, “That’s the nicest thing anyone has ever said to me.” She went on to say, “When we get older, I think you will be somebody like (struggling for the right word) a bank president or something.” I thanked her and said, “We are fortunate to have found each other.” That prompted her to begin a conversation (almost a soliloquy) about other people who haven’t been as fortunate as we have been. I was mostly a facilitator. This conversation lasted about fifteen minutes before she was ready to go home.

I didn’t say anything about the sitter’s coming until the doorbell rang. I explained to Kate that I was going to a meeting and that she and Mary were going to have lunch together. She gave me a dirty look and asked why I couldn’t go with them, but she didn’t look insecure. “Irritated” would be a better description.

This was the longest I have left her, almost five rather than four hours. That made me wonder what she might be like when I got home. As it turned out, she and Mary were seated on the sofa looking at her mother’s family photo book. She didn’t even look up when I walked in the room. I was glad to see that. It encourages me to see her sharing moments like this with Mary. I feel that is an important bond. Mary has been with us for over two years while the Monday sitter has changed several times. I would hate to lose her.

After Mary left, Kate and I picked up the same photo book. We didn’t get far. She was tired and wanted to rest before going to dinner. At dinner, she expressed her desire to get to bed early multiple times. Instead, she became occupied with her iPad until 8:00 when I suggested she might go to bed. She was ready. When I joined her about 9:45, she was still awake. I’m not sure when she went to sleep. I know that I dosed off and woke a little later, and she was still awake.

I don’t know whether Kate remembered my name or our relationship the balance of the day. I know that she acted as though she did and didn’t ask my name again. It was a relaxing day, another day in which we enjoyed being together. I am happy to say that.

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Relaxed and Happy, But Confused

After Kate’s insecurity yesterday morning, I wondered what the rest of the day would be like. I’m happy to say that it was a very relaxing and peaceful day. I didn’t get her up until almost 11:15. Like the day before, she got up and dressed rather quickly. She was in a good mood and didn’t show any signs of confusion except for not knowing where the bathroom is located.

As we walked along the sidewalk outside the restaurant where we ate lunch, we passed a group of women who were having lunch after their weekly game of tennis. We see the almost every week and don’t know their names, but we always speak briefly when we are either going in or leaving. Kate was especially friendly. I don’t recall what Kate said, but it was something that I suspect made them wonder a little about her. I thought about giving them one of my Alzheimer’s cards but didn’t. I may do that another time.

When our server brought our drinks, Kate gave her a nice greeting and asked her name. She has done this the past couple of times she has served us. She not only asked but tried to repeat it but mispronounced it. The she asked the server to spell it. I informed the server about Kate’s diagnosis long ago or she might have wondered about her. As it was, I think she felt the way I did and appreciated the fact that Kate was interested in trying to learn her name.

We spent a quiet afternoon in our family room at home. Kate wanted to rest as soon as we walked in. Unlike most days, she went to sleep. I’m not sure how long, but she must have slept at least an hour. I sat across from her looking through a couple of catalogs and checking email. Periodically, I was out of the room briefly while I tended to washing clothes and watering plants.

Kate woke up and started looking at the back yard. From her position on the sofa she can see the tall trees behind our house. As usual, she remarked on how beautiful they are. In most ways, she was very relaxed and seemed perfectly normal. Then she pointed to the back yard and said, “I used to walk all around this place when I was a child.”

As I have noted many times before, she also busied herself by pulling strands of her hair starting at the scalp and moving to the ends when the hair falls from her fingers. She has acquired what I see as a more problematic habit recently. She deliberately puts saliva on her fingers and wipes it on her forehead and, sometimes, her arms. She takes both of these habits very seriously and often wants my attention to watch what she is doing. She believes both of these habits do something good. I’ve never understood what.

Later as I was coming inside after watering plants, she looked at me and said, “You and I went to school together.” I said, “Yes, we did. Do you know the name of the school?” She said, “Let me think.” When she couldn’t guess, I said, “TCU.” She said, “That’s right.” As far as I could tell this was the first time during the day that it was obvious she didn’t remember who I was. Of course, she slips in and out between knowing and not knowing very quickly. She can mention her mother’s name in one moment and ask her name in the next.

She had brief scare late in the afternoon when she came out of our bathroom. I had left momentarily to take a few things to the washer. I heard her say, “Hey” a couple of times before I got to her. She was greatly relieved to see me. Since she has become so dependent on me to tell her what to do or where to go, she is often afraid when she doesn’t know where I am.

It was also a day when, most of the time, she didn’t recognize that she was in our house. That happens regularly in the morning and did yesterday. Throughout the day and into the evening, she said things that indicated she thought she was some place other than home. Interestingly, sometimes she wanted to “get out of here.” Other times she commented on what a nice place it was. As we left for lunch, she said, “I feel really sad leaving here.” I told her we would be coming back after lunch. She felt better. Later as we left for dinner, we had a rerun of the same experience.

All in all, it was a nice day despite her confusion. My own assessment of how things are going continues to depend on how she responds to that confusion. I am able to accept the decline in her memory and the confusion she experiences so long as she is happy. Much of the reading I have done on the topic of caregiving emphasizes the importance of accepting the person for whom you care as she is and focusing on making life as fulfilling as it can be. That makes life better for everyone. I believe it.