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.

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.

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.

Still Having Fun

A little while ago, I posted a picture on Facebook. It was of Kate and me taken at lunch on Sunday with a rather large piece of chocolate cake in front of us. A friend asked if it was a special occasion. I replied that we make every day a special occasion. I really meant it as a playful response, but we really do make everyday situations special. In the middle of all Kate’s changes, we continue to have fun.

At the moment, I am thinking of experiences we had at lunch time today.
As we walked along the restaurant’s outside patio, I heard a song that was popular in the 60s and asked Kate if she would like to dance. She said, “No, but you can.” I took her up on it and started dancing while she watched. The song ended, and she applauded. We both laughed and opened the door. That’s when we saw several servers who had been watching us through the window. I felt a little silly, but they seemed to get a kick out of this old couple having a good time.

We had another moment of laughter when Kate asked the name of the restaurant. I said, “Tony’s Kitchen.” She tried to repeat it and said, “Tony’s Chicken.” That led to a few minutes during which I attempted to teach her that it was “Kitchen” not “Chicken.” I was never successful, but we both enjoyed a good laugh.

It’s spring, and Kate loves the azaleas. It is impossible for her to remember what they are called. She refers to them as “those pink flowers.” She has always enjoyed “the green” of trees, shrubs, and vines. The new growth of leaves on the trees has added to her pleasure. The beauty of spring makes even a routine drive to and from a restaurant special.

Moments like these are good for both of us. They help us maintain a positive outlook while “Living with Alzheimer’s.”

Back to Panera

Increasingly, I find that I am no good at predicting what each morning will be like. Thankfully, we haven’t had any bad mornings. I’m mostly thinking about what time we will start the day. Overall, Kate gets up later than she did a year ago; however, she periodically surprises me like she did this morning. She was up at 7:30 to go to the bathroom. That’s not unusual although she usually does that a little earlier. This morning’s surprise was that she got up again at 8:30 and was ready to start the day.

Like the two previous mornings, she seemed alert, not groggy the way she often is. I asked if she wanted to shower. She did. I was glad as she hadn’t showered in two days. I thought I would have to coax her, but we avoided that. I left her after she was in the shower and went back to the kitchen. My next surprise was that she didn’t take as long to shower as usual. She often showers for fifteen minutes or so.

I went back to show her the clothes I had put out for her. It seems that no matter where I put them she doesn’t see them and has to asked me for them. That was the case this morning. I was fully prepared for her to get back in bed, but she didn’t. She was ready to dress.

As I helped her dress, she said, “What’s your name?” That was the first sign of any memory loss or confusion. Otherwise, she seemed perfectly normal except for needing my help finding the bathroom and getting her clothes. It made me think again about how easy it is for someone with dementia to get by in brief social encounters without anyone’s suspecting the diagnosis. As usual, she asked my name in much the same way that she might have asked, “What’s on TV?” She is perfectly natural and doesn’t appear to be bothered in any way by not remembering.

After I told her my name, she tried to repeat it but couldn’t. She tried to say “Creighton.” I repeated it for her, and she tried again. She got it on the third or fourth try and repeated it several times in succession. Then I said, “Do you know who I am?” She hesitated and tried to think but didn’t say anything. I told her, and she smiled. I said, “Don’t you believe me?” She said, “I believe you.” She seemed comfortable with that, but didn’t express any special enthusiasm.

We got ready more quickly than usual and arrived at Panera by 9:30. We haven’t done that many times in the past 8-10 months. She is working happily on her puzzles as I write this post. That reminds me of another surprise. This involves her puzzles. Last night she asked me for help. When I looked at the puzzle, I noticed that she had completed all the edge pieces and was starting to place the others. That struck me because I have suggested for weeks that she start by finding the edge pieces and putting them in place. They are easier to identify. Once placed it is easier to place the others. That is especially true when you are working with 16-piece puzzles.

A little later, I was also surprised when she needed help finding the last remaining piece. This time it was because she couldn’t find the piece itself. She was able to see the “hole” in the center of the puzzle where the piece should go. I frequently show her the piece and the empty space, but she has never been able to see it. That has been a big “puzzle” for me. I can only chalk it up to her Alzheimer’s.  Both of these surprises tell that she is able to learn some things that I thought she couldn’t. Her rational ability has not totally vanished.

Unfortunately, it’s a quiet morning at Panera. We haven’t see anyone we know except the staff, but Kate enjoyed her muffin and is now enjoying her puzzles. It’s also a nice break from our regular routine. It looks like another good day.

Back to Our Routine

We said goodbye to Kevin and his family night before last, and they left yesterday morning. We were back to a regular routine. That doesn’t mean that everything went the way I would have liked. Once again, Kate had a slow start. It was another morning when she didn’t recognize me as her husband. It seems this is becoming a pattern. When this happens, I don’t try to convince her, I redirect the conversation to something else. This morning I did something I don’t usually do. I said, “Could I ask you a question?” She said, “Yes.” I said, “If you don’t think I am your husband, who do you think I am?” She said, “I don’t know.” I said, “Do you think of me as someone you can trust?” She looked at me, hesitated a moment, and then said, “Yes.” I told her I was glad to hear that and wanted her to count on me for anything she needs.

On the way to lunch, I mentioned that we had met at TCU and that was where we had our first date. That led to a few other recollections of our past together. By the time we got to the restaurant for lunch, she seemed to be herself. I don’t mean that she knew my name or hers, but she seemed comfortable with me and our surroundings including our server.

As soon as we returned home, she wanted to rest. It wasn’t long before our sitter arrived. I gave her an update on the past few days. Then she went back to the bedroom to say hello to Kate. I followed in a few minutes and told her I was going to the Y and would see her later. She was very comfortable with Mary and fine with my leaving. I left with a good feeling.

When I got home, they were watching the last part of Les Miserables. They were both enjoying it. Mary left, and Kate and I watched the last thirty minutes together. She was as engaged as she has ever been. I was happy to see that since the last time I had put it on, she wasn’t as excited. That was the only time she has failed to respond with enthusiasm.

After dinner, I watched the news and then switched to several music videos that I knew Kate would like. She worked on her iPad and didn’t want to stop when I said it was time for us to get ready for bed. She said she wanted to finish the puzzle she was working on before putting on her night gown. I know from experience she can’t remember to stop when she finishes a puzzle. It was thirty minutes later before I told her it was time to get to bed. She didn’t want to stop. I told her I wanted to get to bed myself, but I didn’t want to do that if she wasn’t in bed. She reluctantly agreed to stop.

Once she was ready, she asked if she could work on her puzzles in bed. I told her that would be fine. That turned out to be a mistake. As I tried to get to sleep, she kept talking to me. She would tell me how well she was doing and wanted to show me the completed puzzles. As usual, she also wanted my help completing several of them. Despite the cataract surgery, her Alzheimer’s still affects her vision. Off and on she thinks she has finished a puzzle when one or two pieces are not exactly in place. When that happens, the app won’t indicate that the puzzle is solved. That means she can’t start another one. This continued for about thirty minutes before she called it a night. This was a time that I suspected the amount of sleep she had the night before and her afternoon nap made it hard to go to sleep. I have expected this to happen before, but it hasn’t. I hope this doesn’t signal a new routine.

Our Sunday

Yesterday morning Kate got up to use the bathroom about 7:00 and went back to bed. I was in the bathroom when she got up. She was quite cheerful and seemed more awake than usual, especially at that hour. When she hadn’t stirred by 11:30, I checked on her. She was lying in bed awake. We spoke to each other, but she didn’t seem as clear-headed as she was earlier. I asked if she were confused. She said she was. I said, “I think I could help you? Would you like me to start with who I am?” She said yes, and I said, I am Richard Creighton.” She said softly, “I know that.” I said, “Do you know I am your husband?” Again she answered, “Yes.” “Do you know you are Kate Creighton?” She also knew that. I decided to go in a different direction. I said, “I have an idea. I think if you get up and we go to lunch, you’ll find things will clear up. We’ll have a nice meal and a good dessert.” Then I suggested the first thing would be to take a shower and that would help to wake her up. That’s what she did. Although she wanted some guidance from me, she still expressed a little independence. She didn’t want me to help her out of bed or to the bathroom. She just wanted me to tell her where the bathroom was.

Following her shower, she got back in bed but she didn’t seem confused at all. By the time she had rested a little longer and gotten dressed, it was after 1:00. We got to Andriana’s shortly after 1:30. She was particularly concerned with Frank Sinatra’s name yesterday. We had been there only a few minutes when she pointed to his picture and asked him name. That was the first of many. One time when she asked his name, I said, “Frank Sinatra.” She replied, “Frank Sinatra. You’ll probably have to tell me again. What’s his name?” She wasn’t kidding.

We were back home a little after 3:30 and spent the balance of the afternoon relaxing by a fire in the family room. Not too long before dinner we had a nice phone call from our son, Kevin. Then we went to dinner and returned home where I watched the Patriots and Chiefs game. She worked on her iPad until just before 10:00. It was a nice day.

Getting Back to Normal

As I expected, we had a rather quiet day yesterday. Kate slept until almost 11:00. She was in a good humor and smiled at me when I walked to her bedside. At first, I felt that she must have known me. I asked if she were hungry. She was and wanted her clothes. I pointed them out on the chair right next to the bed. She asked me to help her up. She sat up on the side of the bed. I got her clothes. As she started to dress, she looked up at me and said, “Who are you?” I told her my name. Somewhat hesitantly she said, “Are you my husband?” I told her I was.

When she was ready to go, we went to lunch. The only question I recall her asking was the name of the restaurant. I can’t be sure that she remembered my name and/or that I am her husband. She didn’t ask.

After lunch, we came back to the house where we relaxed almost an hour before going to get our hair cut. Apart from one small incident, she didn’t seem confused. That occurred after the stylist cut her hair, and I took my turn. I had given the iPad to her in the waiting area while I went to the back of the shop. In a few minutes, she came looking for me. She indicated that she didn’t know where she was to go. The stylist told her she could stay in a chair near me or that she could go back to the waiting area. I couldn’t hear exactly what was said, but Kate ended up staying in the waiting area where I had originally left her. I think that she had forgotten where I was and just needed to know.

The rest of the day was rather laid back. We came home and relaxed for a while before going to dinner. When we returned home, I watched the evening news while Kate worked on her iPad. Kate went to bed early but did not go to sleep. I was up later watching the first half of the Baylor/Vanderbilt game. When I got in bed, she was still awake. Much of the time she had been in bed running her fingers through her hair. She said that she was “making progress.” Otherwise, she seemed perfectly normal and didn’t get up at all during the night.

Miscellaneous Happenings Yesterday

Yesterday Kate got up after 12:00. I wasn’t troubled by this since we were going to Flat Rock, North Carolina for a Christmas show that started at 8:00. That is the latest event we have attended in almost two years. I knew she would need as much rest as possible. She had no trouble getting up. She seemed to recognize me and was in a good humor but not ready to engage in conversation. After her shower, she thought I was trying to rush her as she was getting dressed. I was actually trying to avoid rushing her, but I moved too quickly explaining the order of the apparel I had put out for her. She snapped at me. Then she apologized. I said, “That sounds more like the gal I know.” She said, “I was taught to be polite.”

In the car on the way to lunch she worked harder than I ever recall to learn my name. She repeatedly ask me my name almost the entire time we were in the car. She never seemed frustrated, just intent on getting it right. She finally said, “That’s enough. I’m not going to remember it right now, but I will later.” We went through the same thing with her name without the same degree of repetition. Once inside the restaurant she said, “I think we are a perfect match.” I told her I agreed. She didn’t ask my name again.

On the way to Flat Rock, I had the radio on to the news. She was attentive to what was said but couldn’t understand it. She kept wanting me to explain what they were saying. A number of times she said, “You’ll have to explain this to me later.” She does this a lot when she is getting overwhelmed by information. In the early years after her diagnosis she used to say, “TMI.” Now she has forgotten that acronym.

Once we arrived in Flat Rock, we spent about an hour in our hotel room and then went to dinner with our friends. She handled herself well although it was hard for her to hear and/or understand the conversation. She had to ask us to repeat what we were saying several times. She gets confused about items on the table. For example, at two of the restaurants we frequent the butter is in black wrappers. She always thinks they are chocolates. I have to watch or she starts to eat them. She’s only been successful one time and didn’t waste time spitting it out. The other times I have caught her before she puts one in her mouth. I usually remember to unwrap a couple of them put any remaining ones near me to minimize the chance of her making a mistake.

We didn’t have that problem last night, but there was something else. Three of us had either soup or salad before the meal. At the same time, the server brought a basket of small rolls and placed them near the center of the table in front of Kate. Thinking they were hers, she put the basket at her place and ate all of them along with the butter.

Keeping up with things like coats, sweaters, and gloves can be a challenge. I try to watch for these things, but I am far from perfect. Last night she wore gloves to the restaurant. As we started to leave, she could only find one. A quick search produced the missing glove under the table.

When we walked into the lobby of the theater, our friends wanted to buy CDs while we went to our seats. When they met us, Kate greeted them cordially as though we had not been together just a few minutes before.

When we were ready to leave the show, she had lost another glove. We checked with the box office and found that it had been turned in. I should also mention that she has difficulty putting on her gloves. She gets them on the wrong hands so that they are upside down.

As we walked to the car, she asked me where we were going. I told her we were going to the hotel. She was very confused. She thought we were going home. I explained that we were staying at a hotel and would go home tomorrow. She said, “How was I to know?” This is a common experience and is my fault. I know that she can’t remember anything for longer than a few seconds, but she behaves so normally most of the time I tend to forget. In this case, we had spent an hour in our hotel room before dinner. I didn’t think about the fact that she would have forgotten that we were staying in a hotel. There are also times when I assume she won’t understand when she does. It is difficult to recognize those times when she will know something and those times she won’t. I suspect I am not the only caregiver who makes mistakes like this.

Nothing Special, But a Nice Day

It’s a cool, rainy morning in Knoxville. Both the neighborhood and the house are very quiet except for some soft piano music playing in the background. I had planned for us to visit our friend Ellen in Nashville today. The weather report changed my mind. It is supposed to rain a good bit and might snow as well. Either way, I’d rather not be on the highway.

I trust that Kate and I will have another good day. We usually do. That was true yesterday. Kate was up surprisingly early (before 9:00). She had gotten up to go to the bathroom and went back to bed. I checked on her at 10:00. She wasn’t asleep but very relaxed and didn’t want to get up.

When I went back about about 10:20, she asked me what she should do. I suggested getting up and taking a shower. She said she didn’t want to take a shower. After she had been to the bathroom, she changed her mind. This was another day she wanted my help to the bathroom, toilet, and shower.

One thing was different yesterday. She knew me as her husband. She may have asked my name one or two times, but she knew we are married and mentioned things during the day that made that clear.

We were able to leave for lunch by 11:30. That made it easy to return home for the sitter at 1:00. Before she arrived, I pulled up a series of YouTube videos with Christmas music. The first one I previewed was Handel’s Messiah. I told her that was a special piece of music for us because we attended a performance of Messiah on our first date in 1961. I have mentioned this a number of times during this Christmas season, so I was surprised to see that she responded emotionally. Her eyes immediately filled with tears.

I left Kate and the sitter with the videos running. When I returned four hours later, they were still watching. Kate said, “You should have been here for the beautiful music.” Mary said that Kate had rested part of the time and may have actually fallen asleep for a little while. She couldn’t be sure.

We relaxed at home for another thirty minutes before going out for our Friday night pizza. We came back home where I watched the evening news while Kate worked on her iPad. Following the news, we watched a portion of Messiah broadcast by the BBC. It was a good way to end the day.