Yesterday morning Kate was up unusually early. She showered and dressed with plenty of time to get to Panera by 9:15. As we got out of the car, she called me by name. Then she said, “I shouldn’t have done that.” I asked her why, and she said, “You are my elder.” I told her that would be all right and that we were good friends. She said, “I still shouldn’t have said it.” I told her it was all right for me. She paused a second and then said, “I still think I shouldn’t say it, but if it’s all right with you.”
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.
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.
What Can the Horse Whisperer and Mr. Rogers Tell Us About Caregiving?
In 2011, Robert Redford produced and directed the film The Horse Whisperer. It was based on a real story about Burt Brannaman whose unconventional approach to breaking horses captured the attention of many people like me who know little or nothing about them. My crude interpretation of his method is that he establishes a relationship of trust with horses. He does this gradually in small steps by connecting with them in a non-threatening way. The result is that he achieves success without forcing them into submission but gaining their trust. He thinks this is a gentler and better way to achieve the same end.
In the past year, Mr. Rogers has also been the subject of two films. Each in different ways captures Rogers’ approach to relating to children (as well as adults if we take It’s a Beautiful Day in the Neighborhood literally). It strikes me that his approach with children was very similar to that of Brannaman’s with horses. In both cases, the men are keenly sensitive to the little things that can frighten or comfort horses or children. That includes what one says, how it is said, tone of voice, facial expressions and body language.
As I think about it, both Brannaman and Mr. Rogers have something to tell us about caregiving. As people with dementia decline, the world around them must seem strange. I know that Kate is quite insecure and looks to me for security. Even situations that have been routine for years can be a bit frightening. Yesterday, I took Kate to a hair appointment. Recently she has had trouble getting into the chair for her shampoo and expressed her feelings in a loud audible way. I helped her into the chair the last two appointments. That has worked well. This time she wanted me to stay with her and to hold my hand. During the past year, I dropped her bi-weekly massages and her pedicures because she was frightened by them.
I say this to suggest that Kate’s failure to understand the situations she faces is similar to the way horses and children react when they are confronted by something new. I have learned the hard way that I need to interact with Kate the way Brannaman relates to horses and Roger interacted with children. That doesn’t mean I don’t make mistakes. I did yesterday and was fortunate to make a comeback when I returned to a more sensitive approach.
Yesterday she wanted to be more independent, and I have grown accustomed to doing more things for her. That didn’t mix well. She seemed especially slow in getting ready for the day. She spent almost twenty-five minutes brushing her teeth and washing her arms and face. The washing of her arms and face is normal, but she took longer to do it this time. Several times when she was brushing her teeth and showering, she told me to stop helping her and said, “I am not stupid.” I apologized and backed off. It wasn’t just that I changed what I said. I also changed the tone of my voice and facial expressions. She is very good at reading those. I remained with her but didn’t offer any suggestions. I did help dry her. She appreciated that.
As she often does, she wanted to rest a little. I left her in bed for about thirty minutes before returning to see if she wanted to get up. I was careful not to suggest that she should get up or that I was pushing her. Fortunately, she said she was ready for her clothes. I only helped her when she wanted help.
After she was dressed, she wanted to lie down again. I told her that would be fine. I put on the album from the musical Annie and went to the kitchen. I returned fifteen minutes later to see if she was ready for lunch. She was in a good humor and ready to get up. From that point on everything went smoothly. One would never have guessed that she had been upset with me at all. It took almost two hours from the time I went in to get her up until we left, but it paid off. Rushing her only makes things worse. I know that well but didn’t approach her that way from the beginning.
It was clear from the time she got up that she was moving slowly. I believe if I had begun with a gentler approach, we wouldn’t have had a problem at all. I was impatient at her slowness and the fact that she spent so much time washing her face and arms when she was about to get in the shower. That didn’t make sense to me, but that was not what mattered. It probably made sense to her because she couldn’t remember that she was going to take a shower. At any rate, I have learned that it pays to be in sync with her mood and desires and move from there. I think Brannaman and Mr. Rogers would agree.
A Visit with Friends
In my previous post, I commented on what I might call my “Care Team” (professionals, friends, family) and my “Arsenal” (my personal resources I can use as needed). I didn’t specifically mention our visits with out-of-town friends. We have a number of them in the Nashville area whom we have known since our undergraduate and graduate school days. It’s not a great distance from Knoxville, and we have gotten together periodically for years. We have continued to do so since Kate’s diagnosis.
Angie and Tom Robinson are among that group and were in town this past Saturday. We joined them for lunch and afterwards at our home. Prior to each visit, I always wonder how Kate will respond. In the past, everything has gone well. Over time they have been able to pick up on some of Kate’s changes, but not nearly to the degree they did this time. Of course, they were not with us long enough to get the full picture, but they saw far more than in the past. I think they would say that for the first time they could really see her as a person with Alzheimer’s.
The annual Christmas parade had just ended, and a weekly market on Main Street was still underway. That meant we couldn’t park as close to the restaurant as I had wanted. As we walked from the car to restaurant, Kate was bothered by the cold and wind. When something bothers her, she wants it eliminated immediately. The walk didn’t allow for that. She complained about the weather in a way that expressed more irritation than she would have done before Alzheimer’s.
They got to see some of her confusion with respect to ordering and remembering what I had ordered for her. The good news is that she was perfectly at ease with both Angie and Tom. In an email, Angie told me that Kate had asked her to “help me not to do anything stupid.” That is something she often says to me. Angie also said that Kate put her hand on hers several times. In addition, they got to see her confusion regarding her drinks. Kate asked her several times if she could drink her tea and water.
When we finished our meal, I went back to the car and found a parking place in front of the restaurant. While I was gone, Angie said they had a good conversation with Kate “and her responses were pretty good.” It was another good illustration of her ability to respond to people she has known in the past although their names and the things we have done together are long forgotten. As long as she is able to do that, I am optimistic our visits will continue for a good while.
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.
Success With A Movie
Until the past three years, movies played an important part in our lives. That increased after Kate’s diagnosis. Movies weren’t just an amusement. I looked at them as a significant part of our therapy. For at least the past five or six years, she hasn’t been able to follow a plot. As a result, she didn’t understand what she was watching. She could, however, enjoy movies that connected with her intuitive abilities. She responded well to characters she liked or to situations she could appreciate.
As her disease progressed, she experienced greater difficulty getting any pleasure from movies. Despite this change, she enjoyed a number of movies during the past year and a half, RBG, Darkest Hour, Won’t You Be My Neighbor?, and Linda Ronstadt: The Sound of My Voice. The Ronstadt documentary was the last of our successes. I hadn’t tried any new movies since Ronstadt’s until yesterday.
The new Tom Hanks film, A Beautiful Day in the Neighborhood, has received a good bit of publicity. When I first heard about it, I thought it might be worth trying. The fact that she had enjoyed the documentary made me think this one might work. On the other hand, I had also learned that this was quite different from the documentary. That made me wonder if she would like it. Ultimately, I thought it was worth the risk.
As it turned out, I had nothing to fear. Although it has an underlying plot, I believe the success of the film rests largely on communicating its message in a way that Kate could appreciate. In fact, I suspect that most people who like the movie like it for the same reasons that Kate and I did.
The characters’ spoken words played a part in communicating the film’s message, but the tone of their voices, facial expressions, and body language are at least equally important. Hanks mastered the slow way that Rogers expressed his thoughts to children. In this movie, he speaks the same way to adults. In addition, the film was at a pace that Kate could grasp. I believe all of these things were important in making this movie a success for Kate and to me as well.
In other words, this was a successful film experience for Kate because it communicated to her through her intuitive abilities. I’ll continue to keep my eyes open for others that may do the same. That can be difficult. All movies attempt to capitalize on people’s emotions. I also need to keep in mind the kind of emotions a film elicits. There are many that Kate would not like, but It’s a Beautiful Day in the Neighborhood was a clear success.
Early Morning Confusion
I woke up at 5:20. Kate was also awake. I asked if she were all right. She said, “I don’t know.” She was having one of her mild anxiety attacks. I say “mild,” because she wasn’t very emotional. She was concerned about where she was. She didn’t recognize anything and wanted to go home. We talked for about ten minutes. When she didn’t respond to my telling she was at home, I told her it was still early in the morning, and I would take her home later. She couldn’t remember that. I repeated it several times.
Then I thought I might divert her attention by taking her to the bathroom. She didn’t recognize me as her husband but was very willing to let me help her. When we got back to bed, it was 6:00. She didn’t want me to leave her. I got in bed with her. I decided to play a little soft music that I know she likes. The music did what I had hoped. She started to relax and held my hand. We didn’t talk at all. At some point, she went to sleep. An hour later, I got up and went back to the kitchen.
At 8:45, I saw that she was getting up and went to her. She still didn’t know where she was, but she was smiling when I entered the bedroom. She was ready to get up. I took her to the bathroom where she used the toilet and brushed her teeth. When she had finished, I told her it was time for her shower. She got in without complaining. I turned on the shower wand and handed it to her. Then I put soap in the other hand and guided her in using it and then rinsing off. It went well.
When she finished, I helped her dry herself and used the hair blower to dry her hair. She was quite relaxed. Then she wanted to get back in bed. That’s where she is now. Unless she wants to get up earlier, I’m going to let her stay there until time for us to get ready for lunch. It’s another morning when I don’t expect to walk. I think that is four or five times in the last seven.
Another Unusual Incident
Kate and I went to opera night at Casa Bella this past Thursday night. I approach each of these evenings with both anticipation and a small measure of concern. These nights (6:00 to 8:30) have played a significant role in our therapy for almost six years. There have only been a couple of nights when Kate didn’t enjoy herself as much as usual. Those have been within the past few months and have related to changes in our seating arrangement and sometimes being part of a larger group. Now I sit beside her. That allows me to help her more easily, especially in whispering to her when she has questions.
If I had thought much about it, I would not have been concerned at all. After all, it is the Christmas season. That meant we had a generous supply of music for the season including a “sing-a-long” with “The Twelve Days of Christmas.” The crowd was caught up in the spirit of the season, and so we were.
We engaged in a little more conversation after the program ended. The result was our getting home a little later than usual. I was eager to help Kate prepare for bed and to take my shower. That shouldn’t have been a problem, but I didn’t anticipate what was about to occur.
I got Kate to the bathroom to brush her teeth, and she got caught up in the process. She always works hard to clean between her teeth even though I haven’t been unable to find anything. (I sympathize with her since I have a space between two of my teeth that seem to have nothing between but bothers me nonetheless. My dental hygienist believes it is where a crown meets the real tooth.) She took more time than usual, at least twenty minutes. She wanted me to watch what she was doing in case she wasn’t doing it the right way. This involved my watching her go from tooth to tooth using her fingernail like dental floss.
When she finished, she washed her face and arms. That wasn’t unusual except that wanted me to watch carefully. She wanted me to know exactly what she was doing. She put great emphasis on the upper portion of her forehead where her hair begins. During this process, she continually pointed her fingers toward me so that I could see what she was getting out. She sometimes refers to “them” as “thingies.” I’ve never been able to see anything but acknowledge that I have seen them.
When she got to the bed, it was time to work on the toes. She runs her fingers up and down between each toe and can repeat this process several times. That night was one of those times. Then she wanted me to do it. I complied. When she got in bed, she began to pull her hair. Several times I started to step away from the bed. Each time, she called me back saying, “I want you to see this.” This incident was not unique except for the duration. I finally got to shower almost an hour and a half after getting home. She seems to be getting more obsessed about pulling her hair, picking her teeth with her fingernail, and cleaning between her toes. I wonder how far this can go.
Late Night and Early Morning Activity
Kate continues to exhibit a variety of unusual behaviors. One involves her sleep. Yesterday, for the third or fourth time in a row, she was awake rather early. That has altered my routine of taking a morning walk and listening to audiobooks. In fact, it started Wednesday night when she awoke at 11:40 and wanted to go to the bathroom. That is a rare event at this time of the night. After using the toilet, she wanted to brush her teeth. Then she decided to wash her face. Those two frequently go together. In the process, she used one hand towel and four washcloths that I took to the laundry room for washing yesterday. It was 12:30 before I got her back to bed.
She was awake again at 5:10 and wanted to know what she should do. I told her it was early and she should go try to sleep a little longer. She asked about “the others.” I told her there was no one else here but the two of us. She asked where we were. I told her we were in our house in Knoxville. We circled through this same conversation three or four times. Then I gave her a 5 mg melatonin. Not long after that, she was asleep.
I got up at 5:50. Just as I was finishing breakfast, she started to get up. I went to her. She was ready to get up for the day. After using to the toilet and brushing her teeth, she started giving herself a sponge bath. I suggested she take a shower. She really didn’t know what to do and made no attempt to resist.
I have been getting her to use the shower wand recently, but getting started is always confusing for her. I ended up getting in the shower with her, fully clothed. (When we redid the bathroom two years ago, we enlarged the shower to easily accommodate a wheel chair. That gives me enough room to help her without getting too wet.) After I thought she had things under control, I started to step out. She wanted me to stay in order to make sure she was doing things the right way. Then she agreed to let me stand outside the shower in case she needed my help.
After the shower, we went through our drying ritual. We worked together to get much of the water off before she steped out of the shower. Then we adjourned to bedroom where I placed another towel over the chair on my side of the bed. She sits on it while I dry her feet and the lower part of her legs. I finish with the hair dryer. She likes this process, and I often joke by saying something like, “We’re glad to have you at Richard’s Spa today.” She is usually very relaxed after I finish and wants to lie down a little while. This was one of those times.
I let her rest for at least an hour and a half. Then I got her up to go with me to a doctor’s appointment. She was sleeping soundly, but I was able to get her up without too much difficulty. She was in a good mood though not excited about going with me to see my doctor.
Knowing that we would eat lunch later than usual, I was concerned that she would get hungry. I put a breakfast bar in the pocket of my sweater before leaving the house, but she never said a word about being hungry. It was 1:45 before we arrived at the restaurant. The place was almost empty when we arrived. As a result, we had more time for socializing with the manager on duty as well as a couple of our regular servers. Kate and I both enjoyed the meal and our conversation.
Kate wanted to rest as soon as we got home and did so for about an hour. Then we spent another forty-five minutes with Charlotte’s Web. She was still a little tired. Several times I asked if she would like me to stop reading, but she wanted me to go on. Finally, I stopped when it was time to get ready for opera night at Casa Bella. Everything was going well.
