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The Rest of Our Day

When we got home from lunch, we spent a couple of hours in our family room where I played three Rachmaninov piano concertos. Kate sat down to work on her iPad but was tired and decided to rest on the sofa instead. A little after 4:00, I began to be concerned that she might not be sleepy at bedtime. I asked if she would like to go to Barnes & Noble. She gladly accepted my offer.

She asked more questions in the car. She asked my name as well as those of her parents. Then she asked if we have children. After being seated at B&N, she asked, “Where are we?” At one point, she commented on how nice it was to have a place like this (B&N). She has said this once before. I’m not sure what prompted her to say this. She hasn’t said it about Panera or any other restaurant we visit.

From B&N we went to dinner at our favorite Thai restaurant. We always get a coconut soup as a starter and then one entrée. We’ve been getting the same soup for a couple of years or more. Tonight she was completely blank on the soup. She didn’t remember it at all, but she liked it as always.

Upon returning home, we finished listening to a radio interview from a Lubbock station. Our son, Kevin, was interviewed about caregiving and his work as a geriatric care manager. We were both impressed with how well he did. It wasn’t long after that when he called, so we were able to give him our impressions. After Kevin’s call, Kate asked, “Exactly, where are we?” I told her we were in Knoxville, Tennessee. She said, “So we’re close to Fort Worth.” I told her we were a long way from there.

Kate was ready to retire to the bedroom, and it was time for my shower. Before leaving the family room, Kate pointed her finger toward the back of the house and wave her finger right and left and asked, “Which way?” I told her to the left. She started to turn right when I redirected her.

She worked on her iPad for a while but has now turned in for the night. I told her I would be right behind her. We’ve had another good day.

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Even in the most trying times, we still have special moments.

It is now 3:45. Earlier in the day, I wondered what the day might be like. I’m happy to report that it has gone very well. Because Kate was up early, we got to Panera for her muffin before having to leaving for my doctor’s office where I donated my bodily fluids in anticipation of my doctor’s appointment on Thursday. We were greeted warmly by our friends at Panera whom we had not seen in a couple of weeks or more. It started with the man who leads a Bible study group for a Baptist church. Then we had a brief chat with a friend who is a member of the group. After that it was a man I have mentioned several times before. He and his wife are part of a group of people from a nearby Catholic church who come regularly after morning mass. He had been asking everybody about us and if we were all right. Then as we walked out, the window washer greeted us and mentioned that people had been wondering where we had been. It was nice to have been missed.

On the way to the doctor’s office, Kate asked me my name multiple times as well as where we were. She didn’t, however, display any sadness over her difficulty remembering. (I am writing this at Barnes & Noble where she just asked my name.) That makes all the difference in the world in how I respond. I can more easily accept the loss of her memory than watching her experience the pain that periodically accompanies it.

From the doctor’s office, we went directly to lunch at Carla’s. Since that was my first opportunity to eat today, I did something I have wanted to do for quite a while. I ordered separate servings of their salted caramel gelato for each of us. (She just asked my name again.) We were both happy. Even more special than the dessert, however, was the time we had together. One time when she asked my name, I decided to remind her of some of the things we had done during our marriage. I started with some memories of Madison, Wisconsin, where I was a graduate student. I mentioned her job as a secretary in the English department, some of our closest friends, and the things we did. (She just asked my name again. This time she tried to repeat it but couldn’t. She asked again and couldn’t repeat it. The third time she got it and repeated it twice.) We spent the rest of our time talking about our experiences. Of course, I did most of the talking, but she had comments to make a long the way. Not being able to recall the details of the things I mentioned severely handicapped her ability to comment, but I was able to jog her memory at least in terms of a good feeling about our past together.

I wasn’t surprised that she was tired at lunch. After all, she had gotten up at least two hours earlier than usual. She said she wanted to take a nap when we got home. After brushing her teeth, she came into the family room and picked up her iPad. She lay down on the sofa. I already had some music playing. In the car, I had played a Willie Nelson album. She has always liked him, and she was particularly taken with his singing “Bridge Over Troubled Water.” I played it. Then I played another version by Don Shirley. She loved that one as well. That led me to try another song performed by different musicians. I selected “What A Wonderful World” by Louis Armstrong. I followed that with two other versions. Then I played the entire the entire album The Don Shirley Point of View.” This one is a personal favorite of mine. I enjoyed it even more knowing that she was enjoying it as much as I. When we came to the end of the album, I asked if she would like to go to Barnes & Noble where we are right now. We’ll be here another 45 minutes. Then we leave for our Tuesday night special at Bonefish Grill. It’s been a good day.

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Sunday Night

I am always glad to report good news. That is appropriate for last night. After dinner, I suggested that we watch some of Kate’s father’s family movies that I had recently transferred to DVDs. If she were in charge of the Academy awards, they would have won multiple Oscars. She loved seeing films even though they had deteriorated significantly before being transferred to VHS sometime in the 1980s. I always find them interesting myself. Although her grandparents on her father’s side were gone when I joined the family in 1963, I knew most of her aunts and uncles. It is always interesting to see them in their early days with their children whom I also knew. Now almost everyone in the films except for a Kate, her brother, one first cousin, and a few second cousins have passed on.

We watched for more than an hour before going to bed. The movies really brought Kate to life. She was quite talkative even after we were in bed. I was happy that they gave her a sense of connection to her family. As her memories fade, she feels so isolated. She is disconnected from everybody. The movies, like her “Big Sister” photo book restore that family connection even if it isn’t long lasting. I think I will see that we watch more of the films in the future.

In addition to talking about her family, she also talked about our marriage and our relationship. I won’t say anything more about that. I have said it before. Just know that it is something she comes back to regularly. I think some of that occurs because her world is shrinking, and I am becoming an even bigger part of it. I am grateful that she is so appreciative of the things I do for her. I was especially touched the other night when she was so confused. As I was trying to comfort her, she thanked me and said, “You are so kind.” Last night, she took a line from my page when she was talking about what a strong relationship we have. Then she said, “Even if I don’t know your name, I know you. A name is not that important.” Given that she has a hard time remembering things, I was struck by the way she fed back to me what I have told her about not remembering my name. I felt we had had a good day, and we had.

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A Welcomed Rebound

I always like to report good news. That’s especially true when we have experienced a few bumps the day before. In every instance of the bumps, we have moved on to the next day as though nothing had happened. That was true yesterday.

Kate slept late, so we went straight to lunch. She was in a good mood, and neither of us acted as though life hadn’t been perfect the night before. Because I went to a Rotary benefit last night, we didn’t have a sitter in the afternoon. That allowed Kate and me to spend the afternoon together. After lunch, we came back home where I turned on some music, and we relaxed in the family room. I picked out a number of things that I thought she would enjoy and was successful. I have been pleased that she not only seems to enjoy music even more than she has in the past, but she also seems to appreciate a somewhat wider range of music. She certainly expresses her pleasure both audibly and visibly. Among the music I played were two pieces from Handel’s Messiah, “Hallelujah” and “Worth is the Lamb, Amen.” I don’t ever recall her responding so passionately before. It is a special pleasure for me to see her so engaged in music that I love as well.

We spent about two hours and then went to Barnes & Noble for another hour and a half before returning home for me to get ready for my dinner. I suggested to Mary that she take Kate to get her usual Friday night pizza. I also set up the Les Miserables DVD in case they wanted to watch some of it. When I got home, I was pleased to see that they were both engrossed in it. This was the first time that Mary had seen it and liked it. For Kate, of course, it was like seeing it for the first time. When Mary left, Kate blew her a kiss and thanked her. She was in great spirits.

Since Kate was enjoying herself so much, we watched the remainder before going to bed. This is a three-hour production. Kate and I usually watch it in three nights. Last night, Kate had watched the entire DVD in a single sitting, and she was literally moved to tears of joy.

Music has always been special to me. Attending live musical performances has been a special part of our married life. It is only recently that she has developed such appreciation for recorded music. That makes me happy. I play it all the time. If I’m at home, the chances are pretty good that music is playing.

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Kate’s Intuitive Abilities Shine

Yesterday could have been just an ordinary day or, possibly, not as good as an ordinary day. As it turned out, it was a very good day. That wasn’t because Kate’s memory or confusion lessened at all. There were plenty of signs that her “rational” abilities continue on a downward slope.

She began the day slowly. I woke her up shortly after 11:30. She got ready for lunch rather quickly – just over an hour. On the way to lunch I played an album by The Kingston Trio, a popular musical group during our college days. I can’t remember the last time I had played it. I just thought it might appeal to Kate. She really enjoyed it.

When we got back home close to 3:00. Our housekeeper and her helper were in the midst of a major cleaning project. Fortunately, they had completed their work in the family room, so Kate and I hung out there. I played another Kingston Trio album. Kate picked up her “Big Sister” album that her brother Ken had given her in the spring. It’s a photo book that contains a large assortment of family pictures that begin at the time of her birth and goes through January of this year. She has enjoyed it immensely since receiving it.

She looked through it two times in succession. The first time I joined her as she turned from page to page adding her comments about the pictures. When I refer to her comments, I don’t mean the photos call back specific memories, at least not in terms of recalling specific facts. They are exclamatory. For example, “That’s a wonderful picture of Mother,” “Look at the way Daddy is looking at me,” “I love this picture,” or “Oh, there’s Nana.” There are a number of pictures that she singles out as favorites each time she goes through, most notably, the one of her and her brother on the cover.

She spent a good hour going through it the first time. Then she went through it a second time while I started to work on my earlier post. She couldn’t go through without expressing her reactions. This wasn’t like a silent reading of a book. She was enjoying what she saw and expressing it as she went along. That led her into talking about the two of us and how glad she was that I had become a part of the family. She mentioned what a good marriage we have had, the wonderful things we have done together, and how proud we are of our children. Then almost without skipping a beat, she asked, “What is your name?”

While she asks about names frequently, it seems like she is now focusing more specifically on my name and “Where are we?” This is a subtle difference, but I think she is losing her memory of things around her. Those are the things that are upper most in her mind. People and places that are far off simply drift out of her mind until something happens to bring them back like my mentioning our children or other friends. I’m always here, and we’re always in Knoxville. She can’t remember the names that seem most relevant at the moment and wants to know.

After finishing the book a second time, we went to dinner. When we returned home, I put on the Les Miserables DVD. We had seen most of it the two previous nights. This was icing on the cake for a day during which she had already enjoyed herself. I hope that as we go forward, she will continue to derive as much pleasure as she did yesterday. I’m going to be optimistic.

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Up Earlier Today

Just as I was about to think I would have to wake her again this morning, Kate walked into the family room dressed and ready for Panera. We arrived ten minutes ago, and she is well into her muffin. This should be about perfect timing for us to get to lunch around 11:45 and still leave us a little time before leaving for her doctor’s appointment at 2:00.

When she met me in the family room, she was carrying a pair of black pants, black socks, and an almost completely used roll of toilet paper. She brought all three with her to the car. She asked me to wait a minute before I back out of the garage. She was holding the toilet paper and said, “I want to put these on.” She had obviously thought the toilet paper was a pair of socks. With a puzzled look on her face, she put it down and picked up the black socks. She is wearing dark tan pants and shoes that are a light tan, almost yellow. I could tell she didn’t like the idea of wearing black socks and asked her if she would like me to get her another pair of socks. She said yes, and I went back in the house.

I came back with a pair of lightweight, beige socks that are a little heavier than hose. She approved. Teasing me, she said, “I didn’t think you could do it.” Teasing her, I said, “Aren’t you worried about hurting my ego?” She responded, “Your ego could use a little of that.” I get a kick out of her playfulness. She was never like this before Alzheimer’s. This kind of interaction has been beneficial to us in the past few years.

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Living With Alzheimer’s

I’ve had several experiences over the past month or two that have caused me to reflect a little more seriously about our experience with Alzheimer’s. Three books, I’m Still Here, The Dementia Handbook, and Mike and Me have been especially important to me. In their own unique ways, the authors of each of these books has called attention to the importance of our putting emphasis on the things that people with dementia can do rather than those they can’t do. That is, we all recognize that people with dementia lose their memory and ability to organize tasks. Frequently, we act as though all is lost when memory goes. Those of us who are caregivers know that just isn’t so. Kate is a prime example of that. She has very little memory for names (that includes hers and mine at times), places, dates, etc. This does not keep her from enjoying life. That’s because most pleasures in life don’t require a knowledge of “the facts.”

This is a good place for an example. Earlier this week, Kate and I had ice cream at Marble Slab. Each of us picked one of their recommended combinations. We were both happy with we got. I can’t tell you the name of the one I had, nor exactly what was in it, but I enjoyed it. The next time we are there I’ll order the same thing because I will remember it when I see the picture and name posted above the selection of ice creams. Kate won’t be able to remember that, but I can remember for her. I like this particular illustration because it recognizes the fact that remembering names and other facts can be very important, but it also illustrates the distinction between having a pleasurable experience from knowing “the facts.”

Until recently, I hadn’t fully understood this. All I knew was that after Kate’s diagnosis, we decided to make the most of our time together. I acted on this decision by arranging for us to attend many musical and theatrical performances as well as movies. You might even say we have “binged” on these things. In addition, I decided early on that I didn’t want to fix all the meals and clean up afterwards. That led to our eating out for all our meals. I made the choice thinking only of convenience and that it would give us more time together. What I didn’t anticipate was what a social opportunity that would provide. It’s been a life saver. When we added Panera in the morning, that gave us another social opportunity. Ultimately, we added Barnes & Noble as another place to camp out during the afternoon. These days we average about 2-3 hours at home during the day. The only extended time we have at home is after dinner, and it has become a very special time.

So where does that leave us. Well, despite the fact that Kate has continued to decline over the past 7 ½ years since her diagnosis, we are still leading full and active lives. How can that be? I certainly didn’t expect it to be this way. I’m sure that I don’t fully understand why; however, I do believe our strategy for living with Alzheimer’s has played a significant role in our success. I thank Judy Cornish (The Dementia Handbook) for helping me understand this.

For those who have not heard me explain her approach to dementia, let me do it now. She distinguishes between two kinds of thought processes, “rational” and “intuitive.” I’m not sure she would agree, but I tend to think of them as two types of abilities rather than ways of thinking. Rational abilities involve knowing the facts (the names of people, places, things, events) as well as the sequence of steps involved in doing many ordinary things like following a recipe. These are the abilities that PWD lose first. In fact, problems with rational abilities are what lead people to get a diagnosis in the first place. Intuitive abilities involve our senses. Unlike rational abilities, they are retained for a much longer time. Indeed, they often last well into the later stages of he disease. As it turns out, the very things that Kate and I have chosen to focus on are ones that depend on our senses (sight, sound, touch, taste, and smell). Kate’s intuitive abilities have remained intact. We are just fortunate that our passion was not playing bridge. That would have depended heavily on her rational abilities. Instead, the things we’ve enjoyed most are those that can be appreciated directly through the senses.

Our experience raises a question that I will address next time. How well would our strategy work for other couples living with Alzheimer’s?

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The Rest of the Story

After leaving Panera yesterday afternoon, we went directly to Casa Bella for their monthly night of jazz. It was a little different last night. The couple with whom we normally sit were unable to make it. We joined another couple who only come for the evening of jazz and not opera or Broadway. We have sat with them several times but are not as well-acquainted with them. They are a very interesting couple, and both are talkative. That works fine for me, but I’m afraid Kate was left out of most of the conversation. On the positive side, I know that she enjoyed the music.

The best part of the day turned out to be after we got home. Before we left the house yesterday afternoon, she asked me (in sign language, of course) if she should take two of her photobooks with us. I suggested that she leave them home, that she wouldn’t need them at either Panera or Casa Bella. When we got home, she picked them up from the coffee table in our family room and took them back to our bedroom. While I took a shower and got ready for bed, she started going through the photobook her brother Ken had made for her. She took a lot of time carefully looking at the pictures on each page. Frequently, she would call my attention to one she particularly liked. I was encouraged to hear her mention the names of her various family members in the photos. I like knowing that she hasn’t completely forgotten their names. This really is a gradual process, but I notice little differences like having increasing trouble remembering my name as well as her own.

I ended up getting in bed with her, and we both looked at some of the album together. In a little while, she was sleepy. We decided to put away the book and call it a day. I am glad to say it ended on this high note. I had expected jazz night would do that. As it turned out, it only set the stage while her family photos became the main event. I was relieved the day ended so happily, without any more signs of confusion.

I am also glad to report that Kate was up a little earlier this morning and in a cheerful mood. We’re back on track (and back at Panera).

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Just an Ordinary Day. That’s Good.

Kate got up a little later yesterday morning. We didn’t get to Panera until just after 11:00. By that time most of the morning crowd had gone. There was only one man in the area where we sit. He is someone we see periodically. We chatted with him briefly, and Kate had her muffin while I finished up my earlier post.

From there we made our regular visit to Carla’s for lunch. It was especially crowded and, thus, a little noisy. Several of the regular staff have not been there during the past few visits. That has made a little difference in how I have felt about the place. It’s been a reminder that it is not just the food that is important. We liked our server and would be happy to have him again if one of our regulars is not available. As always, our food was good. We also saw our pastor who was having lunch with another church member. We had a nice conversation with him. Before leaving, the man who owns the building across the parking lot from my office walked in. We talked briefly with him as well. So as it turned out, we had a good meal while enjoying brief conversations with people we know.

When we got home, we had almost an hour before both of us had appointments for haircuts. Since Kate’s hairdresser retired about five years ago, we go to the same person. That’s a nice convenience. During our time at home, I put on my album of Les Miserables. After seeing how much she enjoyed the DVD, I was curious to see how she would respond to the audio version. I can’t say that it had the same impact as the DVD. Visuals really do make a difference. However, she was quite taken by it. She had been working on her iPad, but put it down on several occasions just to listen to the music. I can’t fully express the pleasure I get in seeing her respond this way. I love sharing the music with her.

When we returned from getting our haircuts, we sat in the family room and listened to more music until time for dinner. I selected a number of things that I knew she would like. I have an album of the Susquehanna Chorale singing several songs she especially likes, Danny Boy, Shenandoah, Loch Lomond, and Swing Low Sweet Chariot. I looked over at her and saw that she was softly singing with the music. Once again, I could see the power of music. As a result of my reading Judy Cornish’s The Dementia Handbook, I have a better understanding why.

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Follow-Up on Dependence

Yesterday when I returned home to relieve the sitter, Kate was resting on the sofa in the family room. I walked Anita to her car to find out how things had gone. She said they had had a good day. She had met us at Panera but she said they didn’t stay long after I left. I was pleased to hear her say that they had spent a long time going through the photobook that Kate’s brother had made for her. She said that Kate enjoyed telling her about all the people in the pictures. This made me especially happy because I had been concerned that Kate was not enjoying her time with Anita as much as she does with Mary.

Anita told me that Kate had asked about me a couple of times, wondering when I would be home. That is the first time Anita has said anything like this. I took note because Mary has also mentioned Kate’s asking about me. Kate had wanted to be home when I got there. These are little things and may have no significance, but I think they are consistent with her increasing sense of dependence on me. It is more than just the things I do for her. From what she tells me, she just feels better when we are together.

After Anita left, Kate continued to rest a little longer. Then she was ready to go out. We went to Panera. We had been seated for about fifteen minutes, when she said, “I like Panera.” Then she commented on the general atmosphere and the people who were there. She continued working her jigsaw puzzles on her iPad. In a few minutes she stopped. She said, “I like being here with you.” I said, “I’m glad. I like being with you.” As she often does, she moved her lips to say, “I love you.” At the same time, she brings her index finger to her lips and then points to me. Then I said, “We’ve done many special things over the years. Many of them, like being together at Panera, have been ordinary things, but they’ve been special to us. And we’re going to have many more.”

I still see signs of Kate’s desire to be independent. At home after dinner, she brought out clothes for her to wear today. She had a pair of pants, a top, underwear, 3 pair of socks, and 2 pair of shoes. She does this once in a while. I take it as further recognition that it is confusing to get her things together at the last minute. This way it’s done for her when she wake up. Her dependence on me is even reflected in this simple act of preparation. She asked me to check her and make sure she had everything. I assured her that did. Moments like are very touching.