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A Good Start and Finish

Our routine was altered a bit yesterday. Kate called for me about 9:00. She was smiling when I reached her bedside. She wanted to go to the bathroom. She was confused but did not seem to be bothered. She just wanted my help and accepted it through the whole bathroom routine including showering and getting dressed. It was early enough to get her to Panera for a muffin and get back home just after 11:00. That worked out well because I had asked a church friend to take her to lunch. I had a lunch meeting and needed to leave by 11:30. Kate was tired and wanted to rest a while. I explained to our friend that she had gotten up early and might want to rest a little longer before they went to lunch.

When I got home, Kate was still resting. The friend said that she had tried to get her interested in going to lunch, but she didn’t want to. The friend said to Kate, “I think you wanted to wait for Richard.” Kate nodded. I was surprised because this is someone that Kate likes very much. In fact, everybody I know likes her. My only explanation is that while resting, she completely blanked on who the friend was after being excited about having lunch with her. I know that happens with me. It still surprises me when we have been talking about our  marriage and children and then says, “Who are you?”

It was after 2:00, and I took her to Chick-fil-A for a chicken sandwich. It turned out that she had a hair appointment shortly thereafter. As the stylist walked her to the front to meet me, Kate asked where I was. I stood up to greet her. She was greatly relieved to see me. I have become a security blanket for her.

She rested at home for an hour before we went to dinner at Casa Bella for jazz night. We sat at a table for twelve. She must have felt a little left out. She tried hard to participate. Then she retreated for the remainder of the dinner. The music was good, but neither of us was taken with the singers themselves.

When we got home, it was time for bed. Soft music was playing, and we were both relaxed and happy.

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More of the Same

I had just passed the halfway point in my walk at 7:35 yesterday morning when I saw that Kate was about to get up. I went to the bedroom and discovered that this was another morning of the same kind of confusion and anxiety that I have seen more of in the past ten days. It seems like it’s becoming a pattern. She looked very confused. I am sure she didn’t know me, but I didn’t say anything that might have prompted her to tell me.

I told her I was there to help her. She said, “I don’t know what to do.” I said, “Usually you want to go to the bathroom.” She asked why, and I tried, unsuccessfully, to explain. Then I asked her to come with me. She agreed to go with me to the bathroom although she had a look of apprehension on her face. As on other mornings, she periodically said, “Help me. Please, help me.” I assured her that I would. She was very dependent on me to help her with everything. From the bathroom, I took her back to bed. She said, “I wish you could stay with me.” I told her I would be happy to stay. I went to the kitchen to get my things and returned to the chair right beside her side of the bed. She was asleep very quickly, and I returned to my walk.

The rest of the day went well. She was happy to see the sitter and happy to see me when I got home. She did say she wanted to go home. I told her I would take her. We went to dinner. She never said another word about going home.

She watched the news with me but looked rather bored. I asked if she would like to get ready for bed. She did. I put on a YouTube video of a concert of music from My Fair Lady. She enjoyed it. As usual, she was still awake an hour after the concert but was very much at ease. We ended the day on a happy note.

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She Needs and Appreciates Me

I had just finished my walk and was getting ready to complete a blog post yesterday morning when I heard Kate’s voice over the video cam. I went to her. She said, “I am glad to see you.” I said, “I’m glad to see you.” Then I asked if there was anything I could do for her. She said, “Yes,” but she didn’t say what. She was pretty groggy. I asked if she would like to go to the bathroom. She said, “Not right now.” I said, “It sounds like you would like to rest some more.” She nodded. I started to say that I would be in the kitchen when she said, “Don’t leave me. I like you to be here.” I said, “How about my going to the kitchen and getting my things and coming back and sitting in the chair right here.” She that would be fine. When I returned, she thanked me for being with her and said, “You don’t have to say anything at all. You can if you want to.” She added, “You take good care of me. I don’t know how you do it?” It’s this kind of appreciation that gives me encouragement to do everything I can for her.

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Music and More

Not long after Kate and I returned home from dinner Sunday night, Kate started working on her iPad. She quickly found it too difficult and directed her attention to her hair, her toes, face, and legs. I’m not sure exactly how to describe what she does, but it reminds me of a cat that preens itself. She began by pulling her hair. I turned on the TV to one of the NFL games with the sound muted.

I didn’t watch much of the game. She wanted me to watch what she was doing. That is becoming increasingly common. A couple times in the past, she has said she wants me to make sure that she is “doing it right.” I don’t know what that is, but she thinks I do. That’s what matters. After half-heartedly watching as I also tried to catch some of the Steelers/Ravens game, she wanted me to be an active participant. I had the distinct impression she wanted my help this time to keep my attention on her. Several times, she sternly said, “Are you watching me?” One time she caught me when she said, “Tell me what I just said.” I hadn’t really had a chance to get wrapped up in the game, but I admit to giving both the game and Kate my divided attention.

I tried to be obedient when she asked me to do the things she had been doing, but she sensed my lack of enthusiasm. She wasn’t happy. I was ready to take a shower, but she wanted my help. I needed something to redirect her attention and shift her mood. Not surprisingly, I thought about music. I suggested that I look for something on YouTube.

One of the first things I saw was a video entitled “Saint Paul’s at Christmas.” I assumed it was one of their Christmas concerts. I reminded Kate of our celebrating Easter Sunday at Saint Paul’s on a trip to England quite a few years ago. I told her how much we had enjoyed the music that day and suggested this might be fun to watch.

It took only a few minutes to discover that it was actually a documentary that focused on the preparations required to manage all of the different Advent and Christmas events. That led me to tell Kate that it wasn’t a musical performance (though there was some music in the program) and asked if she would like me to find something else. By the time I asked, she was already engaged and didn’t want to change. I watched with her a short time. Before leaving to take my shower, her eyes moved periodically between the TV and me. She made sure that I was watching. When she saw me on my iPad, she told me to watch the TV. It was an interesting documentary that included the beauty of the Cathedral itself and the preparations of the choir, but I finally got up to take my shower. By this time, she had gotten in bed to continue watching. She was sitting up. That was a good sign that she was interested in the program. I know it was far too complicated for her to have understood, but she enjoyed it. Her mood had changed significantly.

It was just ending when I finished showering. The video that followed it was an Andre Rieu Christmas concert, most of which was filmed at his home in Maastricht. It is a magnificent home that was beautifully decorated. The concert was outside with abundant and colorful decorations and lighting. I thought the concert itself was the best I have seen in a while. Kate and I watched the whole program sitting up in our bed. Both of us loved it.

The video ended at 9:40. It was time for me to say good night and past time for Kate; however, the next video was the New York Philharmonic playing Dvorak’s Symphony “From the New World.” It has been a favorite of mine since playing it with my high school orchestra. Kate and I have attended many symphony concerts in the past, but she is not generally as taken with orchestral concerts. I started to turn it off. Then I suggested we just watch a portion of it. To my surprise, Kate was immediately taken with it. We watched to the very end forty minutes later. I suspect the video enhanced her appreciation of the music. Of course, the music was also familiar to her. That surely helped, but knowing why she was so enraptured doesn’t matter. She had just spent almost a full three hours enjoying a documentary, a Christmas concert, and a popular symphony. She was happy. Once again, music played a key role recovering from what started out to be an unpleasant evening.

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An Unusual Breakfast for Kate and for Me

Saturday morning Kate did something she has never done before. It was a few minutes after 7:00. I was about to fix my breakfast when I heard her say, “Hey.” I went to her and asked what I could do for her. She asked if we had anything to eat. I told her I could get her a breakfast bar. She didn’t know what that was. I took her to the bathroom. Then she wanted something to wear. Knowing it was early and that she would probably want to return to bed, I got a robe and helped her put it on.

Then I made a decision to do something very different for us – even before Alzheimer’s. I set a place for both of us at our kitchen table. I gave up the idea of cooking eggs. I opened a package of granola and poured a little into a bowl for each of us. I gave her a breakfast bar, a banana, and a glass of water. I know that we have eaten breakfast together when traveling, but I can’t recall our ever doing so at home. We didn’t have any milk, so we ate dry granola. She was quite relaxed and ate everything I gave her. As far as the food was concerned, nothing was special.  It was, nevertheless, a pleasant and very special moment for us.

Apart from our eating together, I had one other surprise. I had already poured a glass of V8 juice before she called me to the bedroom. She hasn’t cared for V8. For a long time, she drank apple juice in the morning with a cup of yogurt. I looked in our somewhat bare pantry and found a bottle of apple juice that had expired in November of 2018. Then I told her I had only given her water because I new she wasn’t a fan of V8. She didn’t remember what that was and said she would try it. I gave her a small glass, and she drank the whole thing.

There are other things like that. For example, she has always wanted butter and not oil with her bread. At two of the restaurants we frequent, the servers Know to bring us both. She recently asked me what “that” was. I told her it was olive oil and herbs, and I used it for my bread. She tried it and liked it. Similarly, she has never liked onions except in French onion soup. Now she eats onions if they are cooked with her food. She doesn’t recognize that she is eating onions although she still rejects raw onions. A similar surprise is that she sometimes eats her sweet potato fries without ketchup.

Except for a few moments of confusion, the past few days have been very pleasant ones for us. For several mornings, she has been in a cheerful mood. That has made it easier to get her up and help her with bathing and brushing teeth. I don’t mean to suggest that there has been any overall improvement in her memory, but she has not been concerned or depressed about it. She depends more heavily on me, and, for the most part, has been following my lead. It’s a bit like having a mini-vacation within the context of caregiving.

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Feeling Grateful at Christmas

It’s 8:30 this morning. I’ve been up and had breakfast and a morning walk. Kate is still asleep. If she doesn’t wake up before 11:00, I will wake her. I don’t know what to expect, but I do know that we had a great Christmas Eve, the day and the evening. I am grateful.

Following the previous morning, I was relieved that she greeted me with a smile when I woke her yesterday. That set the tone for the whole day. Getting dressed and ready for lunch went smoothly. We were a little later than usual for our lunch. The restaurant was packed and noisy, but we got the last available table. The hostess had made miniature pecan pies and gave us a small bag to take home.

We were back at the house around 2:30. Kate rested while I took care of a few household chores. Then I read her a few chapters of Charlotte’s Web. This is our second time to read it, and we have only a couple of remaining chapters.

We had dinner at Bonefish Grill and were surprised when the hostess took us to a table with a Poinsettia and a present our server had brought for Kate.

From there we went to a Christmas Eve service at our church. I think it’s been about twenty years since we attended this service because we have been with our children for Christmas. It was good to see people we hadn’t seen in a while. We took a seat beside the man who served as director of music for over thirty years. I re-introduced him to Kate and seated her beside him. She couldn’t remember him. As we waited for the service to begin, she said, “I know I’m supposed to know you, but what is your name?” A few minutes later, she she said, “What’s the name of this church?” She didn’t understand his answer, and I told her. The music was beautiful, and Kate was moved by it. There was a part near the end when the congregation joined the choir in singing several carols. She sang along enthusiastically.

Once we were home, I turned on one of the many Christmas concerts that have been on televised. That turned out to be a fitting end to what was a very good day.

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Yesterday’s Early Start

I woke up at 5:20 yesterday morning and found that Kate was awake. I asked if she would like to go to the bathroom. She did. She wasn’t as confused as she was the day before, but she was a bit uneasy and wanted to hold my hand. I got her back in bed right after 5:30. I thought I would go ahead and get up, but she wanted me to stay with her. I was surprised because she didn’t seem that alarmed. Once I was in bed, she wanted to hold my hand. (That is something she often resisted in the past. Now it seems to be a source of security.) At 6:00, I started to get up, but she wanted me to stay. At 6:20, I told her I was thinking about getting up and getting dressed and would come back and sit in the chair beside the bed. She said that would be all right.

Just as I was finishing breakfast about 7:15, I saw on the video cam that she was about to get up. When I got to her, she said she wanted to go to the bathroom again. Then she spent a little time washing her hands, arms, and face. She got her nightgown wet while washing up, and I got her a dry one and walked her back to bed. After she was in bed, she looked up at me and asked where I was going to be. I asked if she would like me to stay in the room with her. She said she would feel better if I did. We didn’t talk, but she didn’t go back to sleep for a long time. It might have been as late as 8:30. Once she said, “Who are you?” I said, “Richard, and I am your husband.” She didn’t believe we were married. I started to say something more when she said, “Let’s not talk about it.”

Just before 10:30 Kate opened her eyes and smiled. That was a good sign. I thought that would indicate I would have no problem getting her up. That wasn’t the case. She didn’t want to get up. I started a conversation about its being a special day for us. It was the fifty-eighth anniversary of our first date. Of course, she couldn’t remember that, but it did get her attention. Then I mentioned a variety of experiences we had had since then. She was especially interested that we have children and wanted to know a little about them. As she seemed more relaxed, I told her I would like to take her to lunch. She accepted my offer.

Getting up and dressed went smoothly. On the way to the kitchen, I showed her pictures of her grandmother and mother. As always, she was especially touched to see her mother’s photo at the age of nineteen or twenty. She stopped in the family room to admire the poinsettias and look out to the back yard that doesn’t look so beautiful right now. To her, it looks the same even with all the leaves gone. Before entering the kitchen, she stopped to look at a poinsettia that the Robinson’s brought the day of their visit. She stops there each day and comments on how beautiful it is.

The balance of the day went quite well. We ended the day with dinner and a program of favorite Christmas music at Casa Bella. We were grouped at a larger table of eleven, but Kate handled it well. We were seated near the end of the table next to someone we see each time and across from a 91-year-old woman and her caregiver. At one point, Kate was actively engaged in a conversation with the three of them. She was talking about some of the things she used to cook. I don’t know that what she said was true, but she was happy. The program itself was a winner as well.

It is now 8:45 the next morning. She has talked a little in her sleep. Otherwise, I haven’t heard a thing from her and can’t help wondering what she will be like when she gets up. I’m thinking good thoughts but not making any predictions.

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The Therapeutic Value of Music and Reading

Kate and I have always enjoyed music and, especially, live performances. They have been fully integrated into our lives since her diagnosis. To start with I didn’t think of this as therapy. We were simply enjoying ourselves. A year or two later Kate experienced several panic attacks as a result of my rushing her to get to events on time. One time she hadn’t calmed down when we got in the car to leave. I turned on the second movement of Brahms’ violin concerto. We didn’t talk while it played (about ten minutes) When it was over, she was calm. Since that time, I have used music a good bit to put her at ease even if she isn’t having a panic attack. It makes her happy.

This past Sunday we attended a Christmas show that achieved the same effect. I think she must have been tired because she had gotten up early and did not rest after lunch as she usually does. I know she was a little grumpy when we walked into the theater from the parking lot. We didn’t walk far, but it was too far for her and also chilly. We sat in our seats for ten to fifteen minutes before the show began. She doesn’t like waiting and complained most of the time. I assured her she would like the show, but she was not convinced.

Her mood shifted immediately when the show started. The cast was large and included a number of young children and teens along with the adults. The music, of course, was the key factor. She audibly expressed her enthusiasm after each song. That set the stage for a very nice dinner experience.

It may well be that reading will be another tool in my arsenal to lift her spirits. I looked at my reading to her as a way to occupy her time when her use of the iPad dropped to a few hours a week after years of six to eight hours a day. That night I was looking for something more than amusement. She was grumpy again after dinner. As she began to get ready for bed, she pointed to the ceiling fan and asked me to “turn that thing off.” I told her it wasn’t on. She said, “Well turn it on.” I did, but she didn’t like it and told me to turn it off again. I started to help her with her nightgown, and she said, “I can do it myself.” As she does so often, she apologized for the things she had said, but she continued to be grumpy.

After she got in bed, I asked if she would like me to read The Velveteen Rabbit. She said she would. She didn’t say a word while I read. That was unusual. I wasn’t sure that she was listening and wondered if she might have fallen asleep. When I finished, I said, “Did you enjoy that?” She told me she did, but it was the tone of her voice that was the clearest indication she was all right. She also said that she remembered some parts from the “other time” I had read it to her. I felt good about that because she didn’t recall the book at all previously. I suggested that it made a good bedtime story and that we might do that again sometime. She liked the idea. I was glad. I found it to be a nice way to end our day together. Reading, like music, is a “Win/Win” for both of us.

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A Special Christmas Moment

I was mid-way in my walk Saturday morning when I saw that Kate was stirring in her bed. I went into check on her. She was lying there quietly pulling her hair. I went to her bedside and said, “Good morning. What are you up to?” She smiled and said she was “learning.” I asked about what. As she began to tell me, I sat down on the bed beside her. She began what turned out to be a one-hour conversation (and concert).

She started with a question, “Have you ever wondered how all these people around here (raising her arm and pointing around the room/neighborhood) got here?” I told her that would be interesting to know and that everybody has a story just the way we do. Then I started to tell her how we met in college. I didn’t get far before she took me in a different direction.

She talked about how difficult life would have been long ago and how hard people must have had to work. I picked up on that and mentioned how things must have been when the first settlers arrived – clearing land, building houses, hunting for game, and farming the land. She asked a number of questions related to the history of the US and the people who came here.

We had talked about fifteen minutes when I redirected the conversation back to our story. I told her about our first date and that we had attended a performance of Handel’s Messiah. She said, “What’s that?” I explained that it was a choral work composed by George Frederick Handel. She asked about the word “messiah.” I gave her a less-than-a-CliffsNotes concept of the word and explained that Handel’s work begins with the story of the Hebrew prophesy of a messiah and then the birth, death, and resurrection of Jesus.

Then I took my phone out of my pocket and played the London Philharmonic and Chorus performing Messiah. She recognized the music right away and could anticipate some of the words and phrases but had trouble with most of them. I went to my phone and googled the lyrics to the different songs and sang along with the chorus or just spoke the words that she couldn’t understand. She loved the music and wanted to understand it better. Off and on I explained the message and sang or read the lyrics. Realizing how long this might take, I eventually skipped to the “Hallelujah Chorus.” When it ended, I skipped again to the last two, “Worthy is the Lamb” and “Amen Chorus.” As the chorus ended, Kate said, “They should have included women.” She didn’t intend to be funny, but I thought it was. With little rational ability, she relies on her intuitive skills which are often wrong.

A good portion of that hour we held hands. Periodically, she squeezed my hand tightly during parts of the music she especially liked. It was a very moving experience for both of us. I was captivated by her enthusiasm as well as my memories of Christmases past. Kate no longer has those memories, but she was moved by the music as well as asking questions and getting answers even though she would never remember them. It was an especially interesting conversation since it involved her desire for information and appreciation of the music were so intertwined.

As in the past, we are celebrating the season with music. We have already been to opera night and jazz night at Casa Bella. Both of these featured Christmas music. This coming Thursday they will host a special evening of Christmas music. Yesterday afternoon we attended another Christmas music special at one of our local theaters. Of course, we have played music of the season at home. Although this will be our first Christmas without family, we are making the most of the season and Saturday’s conversation will be a highlight.

There is no way for me to know what Christmas will be like next year, but I am sure it will be very different. Whatever happens, I am grateful for so many great memories and the ability to create new ones this year.

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It Takes an Arsenal

We have all heard that it takes a village to raise a child. I’ve also heard a variation of that for caregivers of people with dementia: “It takes a Team.” This idea grows out of the recognition that caregivers need to rely on others for help. One part of the team would be those who are professionals like one’s primary care doctor, other specialists, as well as paid caregivers like care managers and personnel at the variety of care facilities that are cropping up in many communities. Another part would include family and close friends.

I agree that we caregivers need a team. I have that in our medical and dental professionals as well as a host of others who would never imagine they are on the team. I am thinking especially of those who work at the restaurants that serve us. I have made sure that they know of Kate’s diagnosis, and they have been very supportive. In addition, we often run into friends wherever we go. They never realize the importance of these brief encounters in lifting our spirits. I should also mention the people who are strangers like those who have helped when Kate goes to the restrooms in public places. I had one of such experience this past Sunday at a movie theater. I don’t know anything about the young woman, but she made me feel more comfortable. When Kate walked out of the restroom, she was holding the woman’s hand just as I might have done.

Beyond these things, I have also found that it pays to have an arsenal (a bag of tricks) that I can depend on when I face the various challenges that arise in caring for Kate. I have relied heavily on music and social engagement. That has worked well. We have binged on music and eating out. Over the past year and a half, I have increasingly used Kate’s family photo books, especially her “Big Sister” album that her brother Ken made for her. Life changes, however, and it’s good to have other alternatives. At the moment, my reading to Kate is becoming another significant way to provide her with pleasure.

Kate’s self-initiated activities have declined drastically. For a long time she spent most of her time on her computer and working in the yard. When the computer dropped out of the picture, it was replaced with an iPad on which she worked jigsaw puzzles. Then the yard work disappeared. That left her with only one such activity. We are almost at the end of using the iPad, but two weeks ago I started reading to her. Despite the fact that it takes more of my time, it has been rewarding for both of us. I have thoroughly enjoyed reading to her and seeing her response. It is a welcome addition to my arsenal and could become more important in the future.

Thus far we have read The Giving Tree, The Velveteen Rabbit, Charlotte’s Web, a quarter of Anne Frank: The Diary of a Young Woman, and two chapter’s of Erma Bombeck’s Family: The Ties That Bind . . . and Gag. The nice thing is that we can re-read books though I plan to keep my eyes open for new ones.

Reading is relaxing for Kate. It also has an impact on her mood. Though she doesn’t understand everything, she picks up enough to make it a pleasant experience. Last night she started to work on her iPad but soon became frustrated and wanted to go to bed. I believe she was discouraged and looked at going to bed as an escape. Once she got in bed, I asked if she would like for me to read something. She did, and I picked up The Velveteen Rabbit. We had read it several other times during the week, but he enjoys it just as much each time. I enjoy seeing her response as I read. She makes frequent comments that let me know she is listening and, at least, understands what I read in the preceding sentence if not more than that.

Last night’s experience was particularly meaningful to me. It was very much like reading a bedtime story to a child. When I finished, I told Kate I had enjoyed it and thought I would look for some other books like it. She liked the idea. Her frustration was gone. My arsenal is growing.