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Our Visit with Ellen

Yesterday’s visit with Ellen was different than usual. As I think about it, the last few visits have been a bit different. I looked back and know that I made a similar comment in September. Both Ellen and Kate are changing. I have come to accept that I can’t predict Kate’s behavior as well as I used to. It is only natural that our visits will also be unpredictable.

Ellen lives in a facility dedicated to memory care and is divided into three “neighborhoods,” each with about twelve residents. They are free to move about from one neighborhood to another during the day but not outside the facility itself which is locked. We usually find her sitting in her wheelchair near the lounge with a television or in the dining area. Last time and again yesterday, she wasn’t in either place or her room. We asked one of the staff if they had seen her. She left to find her. In a few minutes, she returned with Ellen. Although she has been in memory care for two years, she has always recognized us. This time she was unusually excited to see us.

We pulled her up to a table and took our seats. We had only talked a few minutes when she tried to tell us something that we couldn’t understand. I finally understood that she wanted to go back where she had been. It seemed very urgent. We offered to take her, but she wanted us to wait and said, “Back in twenty minutes.” After she was gone, I looked over at the staff member who had brought her to us and explained that she wanted to do something in the other neighborhood. She offered to go get her, but we told her we knew our way around and would find her.

A few minutes later, we found Ellen in her wheelchair beside another staff member who was on the phone. Ellen seemed eager to talk with her. The three of us chatted while the staff member continued her conversation. We were able to gather that Ellen thinks the world of this person but never learned why she wanted to see her so much right then. When she got off the phone, she told us she needed to tend to something else. The three of us headed back to Ellen’s neighborhood.

On the way, Ellen appeared to be looking for someone. I think it may have been the staff member she wanted to see before. As we passed by the clinic, Ellen stopped and opened the door and looked in. Two or three staff members were there, and the one Ellen was looking for came out. She nicely explained that she had to take care of something and walked away. At the same time, I saw that someone else was delivering ice cream to each neighborhood for their afternoon treat.

We went back to Ellen’s neighborhood and sat together at a table where all three of enjoyed our treat. We talked a little while before Kate looked at Ellen and said, “We’re going to have to leave now. Then a visitor we had seen on one other occasion stopped by and introduced himself. There was a woman with him whom I assumed was the person he was visiting. That began a lively conversation, at least between Kate and the man and the woman and me.

When we finished, Kate looked at me and said, “I want to go home.” I knew it was time. We had been there an hour and twenty minutes. That was probably our shortest. We are usually there close to two hours. We recently went over that time when the music lady was there. We were all enjoying the group singing and dancing.

The drive home was not pleasant. It rained all the way, and the traffic was heavy. As sunset approached, it seemed unusually dark. The traffic was moving at seventy or more when a message popped up on the dash, “Passenger Seat Belt Unbuckled.” I looked over to see that Kate disconnected it and was letting it ease back into its stored position. I told her she needed to put it on. She didn’t know what to do. I explained that I couldn’t drive and help her. She asked me where it goes. I put my hand on the connector and touched her leg to show her. She still didn’t know what to do. I pulled onto the shoulder and got her fastened, and we were off again. We were back in town by 5:30 and stopped at Panera for quick bite. I was glad to be off the road and home.

I don’t intend to stop our visits to see Ellen, but the challenges are increasing. Except for the initial greeting, I’m not sure Ellen enjoyed it that much although she didn’t want us to leave. I’m going to keep an open mind about the future.

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From Nashville

Yesterday afternoon Kate and I drove to Nashville for a visit with our friend, Ellen Seacrest, who is in memory care following a stroke four years ago this past August. Except when she has been in the hospital or rehab, we have visited her approximately every 4-6 months. As her condition and Kate’s have declined over that time, I have been mindful that we may reach a point when it no longer seems best for us to continue.

Thus far, I haven’t felt that the visits would end soon, but the visits over the past year have brought about a few changes. Ellen’s ability to speak has declined very significantly. We can only understand about 10% of what she says though she seems to understand us. Music has been an important part of Ellen’s life. In the early part of her career, she was a music teacher. She also served as a church choir director for forty years, started a children’s choir in Knoxville and led it for 15-20 years as well as being actively involved with the musical community. That led me to think about entertaining her by playing YouTube videos of a wide variety of musical performances. That worked well for a while, but we are doing that less now. Ellen seems to tire when passively watching the videos for any length of time.

One might think that a primary reason for reducing or ending our visits would be a direct result of Ellen’s and Kate’s abilities to benefit from these visits. That is clearly a possibility. When we began, they remembered each other without a problem. Ellen still seems to remember us without any difficulty, but Kate’s memory of Ellen has faded significantly. I have had to explain who she is for over a year, maybe two. Once they are together, however, Kate responds with some recognition even if she might not recall Ellen’s name or the experiences they shared for so many years. In this respect, it is like her memory of me. Her not recognizing me by name or relationship is quite common, but, with very few exceptions, she has a sense of closeness and a good feeling about me.

It’s not Kate’s memory or Ellen’s inability to speak that I see as the principle factors that might end or reduce our visits. Before they become issues, I believe we are going to be affected most by the difficulty of traveling. When we started, it wasn’t challenging. It was a relatively simple day trip. We left Knoxville in the morning and returned later that afternoon or evening. When Kate started sleeping later, we left later and got home later at night.

I adapted to that by leaving after lunch and arriving in Nashville late in the afternoon, having a nice dinner, and staying overnight in a hotel. That allowed Kate to sleep late on Sunday as well. Then we could have lunch and go directly to see Ellen. Our visits have been ending about 3:30 or 4:00. That allowed us to get back to Knoxville at a decent hour. We have followed this routine the past six to eight months, and it has worked well.

Our experience this time causes me to think again about future visits. The past few weeks I have felt the effects of the increased responsibilities I have for Kate. That coupled with some of the routine demands of the holiday season have kept me busy. I found that packing for the trip was more challenging. I had more things to think about and was simply more rushed than usual.

On top of that getting Kate in and out of the car and into a restaurant is not as easy as before. That was complicated this time by the weather. She is very sensitive to many things, and that includes the weather. We devote a good bit of time getting her coat and gloves on and off. We have lost lots of gloves in the past, and I have been working hard to keep them in her coat pockets when she isn’t wearing them. Even putting on gloves  is not as simple now. I have found the best way is for me to pick one of the gloves and hold it out in the exact position it should be in to put on the appropriate hand. I am zipping and unzipping her coat now as well.

Her sensitivity is not limited to the weather. When we arrived, I had arranged for a “mobile key.” When the system works, it is a nice feature. We don’t have to check in at the front desk. We go directly to our room. This was our third or fourth time to use it. We have had a problem each time. On our previous visit, we got to our room and found that the door wouldn’t open. I called the front desk, and they sent someone with a regular key that worked fine.

After our previous experiences, I still wanted to try again. I didn’t receive the key at all, so I stopped by the front desk and got a regular key. I didn’t think at all about Kate’s reaction to this. These problems have never affected her before. Not so this time. As we walked to the elevator, she complained about the hotel. That changed her mood and influenced her whole impression of the room. She wanted to know what we could do. I told her I had brought a couple of books that we might read (Charlotte’s Web and The Velveteen Rabbit), or her “Big Sister” photo book, or she could work puzzles on her iPad. She wasn’t interested. She just wanted to “get out of here.”

I suggested that we go downstairs, get something to drink, and go through her photo book. That’s what we did. We went to the restaurant and sat at a table where I could pull up a chair beside her. That worked fine except for one problem. There were a couple of young men at the shuffleboard table. She was frightened by the noise of the pucks. We moved to a table that was as far away as we could get. That helped some, and we spent about forty-five minutes looking at the album. She enjoyed it; however, it wasn’t the same reaction she usually has. Several things accounted for that – her mood, her difficulty seeing, and the noise from the shuffleboard table.

I suggested we go back to the room and get ready for dinner. We had a nice dinner. She got along well. When we walked in the hotel, she immediately commented on how nice it was. This is one of the good things one might associate with not having a memory. She was tired and worked a few minutes on her iPad before retiring for the night.

At 2:30 this morning, she woke and needed to go to the bathroom. When we returned to bed, she asked about “him” and “the baby.” I didn’t understand at first, but she said a few things that gave me a clue. These included “Did the baby come yet?” I told her it had. She asked if it was a “she” or a “he.” I told her it was a she. She was excited and added it wouldn’t have made a difference if I had said, “he.” She asked where he was. I assumed she meant the father and told her he was at the hospital. She asked when we could see the baby. I told her “tomorrow.” She wanted to know why we couldn’t see her today. I said, “It will be today, but since it was still the middle of the night, I said tomorrow.” We repeated this conversation multiple times for the next forty-five minutes or an hour. Periodically, I told her I thought the best thing we could do was go to sleep. She finally did. Until 5:00, that is. She wanted to go to the bathroom again. The baby did not come up this time. Instead she was focused on where we were and why. That lasted only a short time before we were both asleep again.

I got up just before 7:00. After I dressed, she woke up. This time I suggested she go to the bathroom. She went but was very confused. She told me she was “so glad you are here with me.” When I got her back to bed, she went to sleep rather quickly and is still sleeping at 10:00. If she doesn’t wake up sooner, I will get her up around 10:45 for lunch before going to see Ellen.

To be sure, Kate is just as confused at home. That alone would not cause me to end our visits, but there are added complications when we are out of town. I’ll be watching more closely to the way things go the next couple of trips and hope we can continue longer. I say that not only for my desire for us to stay in touch with Ellen but also because it has implications for our visits to other friends who live here as well.

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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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Life is Still Good, But Changing

Yesterday morning, I replied to a Twitter friend who posted the following message.

Today is my fourth year anniversary since my diagnosis of Posterior Cortical Atrophy which is a variant of Alzheimer’s Disease. It affects my vision more than memory. In 4 years I’ve done really well, achieved a lot and still going strong. Power to me.

I congratulated her, and she sent the following reply.

Thank you, Richard. People think it’s strange for me to celebrate each anniversary, but it’s my way of coping and surviving.

I admire the way she is coping with her disease. It doesn’t mean she is free of all the frustrations that accompany dementia, but she is working to make the best of it. I have found that approach personally beneficial and have tried to capture the joy that Kate and I experience. There are times when I feel I may not fully convey the reality of the rough patches we also experience, and I want to make clear that we are now facing the most significant challenges that have occurred since her diagnosis. I have mentioned each of them at sometime in the past, but all of them are becoming more common.

NOTE: I completed this part of the post just before 11:00 yesterday morning when I went to the bedroom to waken Kate for lunch. My intention was to finish it with examples of some of the rough spots. Our experience yesterday led me to use it as an example. I wrote about that in the following section when we returned home from lunch about 2:30.

2019-12-18 (3:00 p.m. EST)

Another Recovery Following a Rough Start

It’s been about a year and a half since Kate first showed signs of anxiety or panic related to not knowing where she is, who she is, or what to do. Thus far I have been able to relieve her, but each time this happens I wonder how long I will be successful. From the beginning, simply trying to comfort her, rather than giving her information, has seemed to be the key factor in each recovery.

This morning (now yesterday) was no exception. About 10:45, I put on some gentle Christmas music to wake her. Fifteen minutes later, I went in to see if she might be ready to get up. She was awake, but it didn’t take long to discover she was confused and very uneasy. She wasn’t cheerful, and she didn’t greet me at all. I told her I would like to take her to lunch. She shook her head to say no. When I asked if I could help her, she gave me the same response.

I told her she looked frightened and asked if she were. She nodded affirmatively. I told her I would like to help her. I could tell that she didn’t recognize me and decided not to push her but just talk to her very gently. It wasn’t long before I said, “I don’t think you remember me.” She confirmed that. Then I gave her my name and told her I had I had known her a long time and could help her with any questions. I also asked if she felt she could trust me. She said yes. I said, “Other times when you have felt this way, you have felt better after you got up and dressed.” She wasn’t ready. I asked if she would like me to read something. She did, and I got Charlotte’s Web and read a couple of chapters. When I finished, I got up from my chair. Her eyes were open, and she looked at me. I spoke to her. She didn’t respond at all. She looked very strange, like she was asleep with her eyes open. Then her eyes closed, and she was asleep. This was the first time I had ever seen her like this. I let her sleep a little longer and then went back to wake her. When I returned, I asked if she thought she could get up for lunch. She asked about her clothes. I told her I had them ready for her.

She was still uneasy as she got out of bed. She didn’t want my help although she did want to hold my hand as we walked to the bathroom. She took a long time brushing her teeth. She got irritated with me when I tried to help her. I pulled back and let her take her time. She didn’t want help dressing and was irritated when I tried to help. I apologized for pushing her. I feel sure she didn’t recognize me and felt uneasy about dressing in front of me. Ultimately, she needed my help and accepted it; however, I didn’t take over. I let her do as much as she could.

When she was dressed and walked into the family room, her mood quickly changed. She stopped to look at the poinsettias and the back yard and commented on how beautiful things were. We walked to the kitchen where she took her morning meds. She was just fine and has remained that way since. We had a nice lunch, and she has rested a good bit since we returned home. I am hopeful that the evening will go well, but I know that we may not be so fortunate in days ahead. In the meantime, I am happy that we experienced a good recovery today.

NOTE: I finished the section above about 3:45. I started the following part last night at 9:20 and finished this morning.

At 4:30, I saw that Kate had opened her eyes. She seemed to have rested comfortably for almost two hours. I know she didn’t sleep that long because I saw her open her eyes and look around several times and spoke with her a couple of times. This time I asked her if she would like me to read something to her. She wasn’t enthusiastic and said, “What would you read?” I mentioned The Velveteen Rabbit, but she wasn’t interested. I mentioned Charlotte’s Web, and she accepted that. I read about twenty minutes. She didn’t respond at all. I went over to her chair and kneeled down beside her and asked if she would like me to take her to dinner. I encountered the same experience we had had that morning. Her eyes were open, but she didn’t respond at all. Again, it looked like she was sleeping with her eyes open. Shortly thereafter, her eyes closed. I waited a few minutes. Then I asked if she would like to go to dinner. She asked me to go without her. I continued to talk softly to her and told her that I didn’t want to eat without her. She agreed to go.

I was sure by the way she related to me that she didn’t know who I was. Before we left, she confirmed my suspicions when she asked who I was. On the way to dinner she asked my name. When I told her, she said, “Nice to meet you, Richard. Do you know my name?” After I told her, she tried to repeat it and failed. She asked me again. She tried again. We went through this several times, and she ended up saying her name about three times in a row and expressing confidence that she now might remember. We had a pleasant time, but she knew neither my name nor our relationship and was a little more formal or distant that usual.

On the way home, she asked where we were going. I told her we were going home. She wanted to know what that meant. When I told her we lived in the same house, she said, “But where will you be?” I told her we would be in the same bedroom. She was very uncomfortable with that. I promised her that I would not create a problem and that we had lived together a long time. She still seemed a bit puzzled.

When we got home, she didn’t recognize the house. Once inside, however, she must have felt a little more comfortable because she started to behave the way she always does. I am not sure that she knew me as her husband, but she was perfectly comfortable as I got her ready for bed. It could have been that she was totally dependent on me as to what she should do and simply had to trust me.

I stayed up another hour after she went to bed. When I got in bed, she was glad. She was perfectly comfortable with me. She was like she is any other night. Did she know me? I don’t know if she remembered my name or our relationship. We had just finished a full day during which she didn’t. That is a new record.

The good news is that the day ended on a happy note and that she was as comfortable with me as she has ever been. Despite challenges like these, we focus heavily on the good times we have, and I intend for us to continue doing so as long as we can. At the same time, I can’t deny the reality of Alzheimer’s. It takes its greatest toll on Kate, but that, in turn, has an impact on me. I remain optimistic about how I will adapt as the disease progresses, but the most difficult part remains watching her lose so much of her ability to survive on her own. It is especially hard in those moments when she suffers as she did off and on yesterday.

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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 Different Response to My Name

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.”

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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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This Morning

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

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

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

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

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

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

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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.

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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.