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Meeting our Expectations

In my previous post, I mentioned that the Greeleys were visiting us for the afternoon and that I expected to have another great day. It was a very good visit. We showed them a little bit of our world. Kate was late in getting ready, so we had them meet us at Panera. We chatted briefly before driving to Bluefish Grill for lunch. We introduced them to our friends out there, the hostess, our server, and the manager.

We caught up on their lives as well. Scott had recently returned from a three-week trip to Native American land in Arizona and New Mexico. This was another one of his many trips with students. He is preparing a video of the entire trip for them. He showed us three-quarters of it yesterday. Very impressive and very interesting. While Kate and Jan had a conversation, Scott gave me a fascinating Cliff Notes summary of the trip and culture of the various Indian tribes.

At 5:00, I received a phone call from a former housemate at TCU. I told him he called at a good time and would never guess who was with us. When I told him, Kate responded with great surprise and said, “Scott Greeley? I didn’t recognize you.” I was equally surprised at her reaction. Although I know she can’t remember their names, it never crossed my mind that she would have spent more than five hours with them and not know who they were.” I have to believe it was a momentary lapse. I do know that she usually knows my name, but sometimes she forgets. When I tell her, she often says, “I knew that; it just slipped my mind.” Whatever the reason, it got my attention.

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Expecting a Good Day

Good morning. It’s a beautiful morning here. I hope it’s the same wherever you are. I slept a little later this morning (6:00) but still got in a morning walk. While walking I finished listening to Bradbury’s Dandelion Wine. It’s been around a good while, but I had never read it. My friends Tom Robinson and Bruce Morton had recommended it to me. Great recommendation. One of the best books I’ve read in a while. The balance of the walk I started Hemingway’s The Sun Also Rises. I thought this was one I had read as an early adult, but I don’t remember a thing. I Know that I read a couple of his books long ago and liked them.

We had a good experience with the sitter yesterday. On Monday, Kate seemed less enthusiastic about her time with Anita. Most of the time I don’t tell Kate I am going to be going out until just before the sitter arrives. Yesterday I told her at lunch. It didn’t appear to bother her at all. About fifteen minutes before Mary arrived, I told her again that I would be going to the Y and that Mary would be with her. Once again, she seemed fine with that. She expressed no reservations at all. When Mary arrived, Kate greeted her as warmly as ever.

When I got home, they were both sitting in the family room. They had been to Panera though Mary said they didn’t stay long. She said that Kate wanted to come back home to see if I had come home. Although that may have been a sign of wanting to see me, it did not appear that Kate had been disturbed at all that I had been gone. After Mary left, Kate commented on how nice she is and what a good driver she is. Now I am eager to see what happens with Anita on Monday.

Over the past ten days we have had an unusual amount of time with old friends. Kate and I have enjoyed that. Today is bound to be another good one. The Greeleys from Nashville are coming in for the afternoon. They’ll be here for lunch.

The couples we’ve seen recently led me to think about our very closest friends. There are five couples. We have known them for more than fifty years. (Scott Greeley, who will be here today, and Kate have known each other since infancy. I know there must be others, but that’s the longest-lasting friendship among any of the people I know.) Each couple has been married over fifty years. All of the men have been college profs though two of us found a home in the business world. We come from very similar religious backgrounds and we share similar religious and political views. All of these ties make for very special times when we are together. Today will be another good day.

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At Lunch

Shortly after we sat down to lunch, Kate looked across the table at me and said, “I’m sure glad I married you.” She paused for a moment. Then she said, “What’s your name?” I told her, and she asked, “What’s my name?”

As we prepared to leave, our server wished me a Happy Father’s Day. I said, “I get a double this year?” She and Kate looked puzzled. The server said, “What do you mean?” I explained that this year it was not only Father’s Day but is also my birthday. Kate’s expressed surprise. She covered her mouth with her hand. Then she looked at the server and said, “You gotta get me outa this.”

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Mike and Me

I think most caregivers have an interest in how their experiences compare to others. That is certainly true for me. Since Kate’s diagnosis, I have read quite a few books written by other caregivers or people with dementia. The stories and the ways in which they are told are very diverse. I always take special note of both the similarities and differences between their experiences and my own. In general, our story has involved fewer struggles and complications than the ones I have read about.

Last night, I started a new book, Mike and Me, by Rosalys Peel. I was immediately struck by several ways that her experience with Mike was like Kate’s and mine. It’s far too early for me to comment in detail, but one thing stands out. It sounds like their relationship and approach to living with Alzheimer’s is very much like our own. From the outset and the end, they were committed to taking advantage of their time together. They knew there were many aspects of the disease that were beyond their control. Their focus was on those things they could control.

Their story provides an optimistic perspective on a disease that brings with it a host of challenges and adjustments for both the PWD and the caregiver. There have been times when I felt I didn’t want to talk or write about our experiences because we have gotten along so well. Many caregivers gain support and encouragement from the struggles of others. I learn from those. They help me appreciate our own situation, but I draw my greatest support from those who have successfully maneuvered their way through this disease. Interestingly, Twitter has introduced me to many of those stories. Mike and Me is one of those.

PWD are not all alike. Neither are their caregivers. Despite the immediate connection I feel with their situation, I suspect (too early in the book to be sure) there is a difference between Kate’s approach to her diagnosis and Mike’s. Kate has always wanted to be private about it. It’s been 7 ½ years, and she has only told two other people about her diagnosis, her brother Ken, who also has Alzheimer’s, and her best friend Ellen.

Except for the first few months after the diagnosis, she has not talked with me to any extent about it. At first, we had conversations that involved how we felt and how we wanted to respond to it. For several years, she made passing reference to it. I don’t think I have heard her say anything about it for more than a year or two. I seriously wonder if she recalls that she has AD. My natural inclination is to talk about how she is feeling. I can only infer from her behavior. I’m able to tell when she is up and when she is down. I’m glad to say that she has many more “ups.” That is especially true during the past couple of years. In the early stages, she experienced frustration which prompted her low moments. It appears that she no longer associates her behavior with AD. Thus, there is no frustration that I can detect.

Kate’s choice has been to simply live her life as normally as she is able. That may have turned out to be a good thing. She hasn’t let AD dominate her life. That is definitely the case at this stage of her disease. We still enjoy life and each other. She’s happy. That makes me happy.

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Yesterday

We had another good day yesterday. It was a good example of how little time we spend at home on a typical day. Kate slept a little later, but we made it to Panera for almost an hour before going to lunch. After that, we came back home. That left us about two hours before our hair appointments at 3:00. Knowing that Kate doesn’t like to stay at home for long, I gave her an option to go to Barnes & Noble. She opted to stay at home.

About an hour and fifteen minutes later, she got up and went to the bathroom. When she returned, she was ready to go. It was 2:30, so I asked if she would like to go for our haircuts then or wait another fifteen minutes at home. She wanted to go the hair salon. That’s what we did. As it turned out that worked well. The person who cuts our hair did not have a 2:30 appointment and took her right in. It was a day for color, so I had time to run back home for a while before returning an hour later for my haircut.

By then it was 4:00. That left us time before we were to leave for jazz night at Casa Bella. I asked if she would like to go home or to Panera. She wanted to go to Panera. I have often commented about the importance of Panera and other restaurants to both of us. It puts us in centers of activity. We often see people we know and engage in brief conversations. In addition, we meet new people who also come regularly.

Although Kate obviously enjoys being at Panera, I have never heard her make a comment about it until yesterday. She loves children and had been watching a young child in his mother’s arms as she got herself a drink. Then she said, “Panera’s a nice place to be.” She went on to say something about the surroundings and the people that we see. When she says things like this, I am reminded of how much she takes in. It’s a happy moment for me. It also makes me think. I’m afraid I sometimes underestimate her. I know it is common for other people to underestimate what people with dementia can understand. We are easily drawn in that direction, even caregivers who should know better.

We left Panera in time to change clothes before going to Casa Bella. When Kate was ready, she was carrying a turtleneck sweater and pair of pants that go with an old warm-up suit I used to wear to the Y in the morning. I didn’t say a word. She brought them to the car but didn’t take them into the restaurant. I would have said something if she had started to do that.

It was another beautiful evening of music and socializing. We sat with one couple we sit with every time we go for one of their musical evenings. That’s three times a month. The other couple has joined us several times in the past few months. They are all interesting people, and we get along well. Kate doesn’t talk much but enjoys being with the group, and she loves the music. It was a terrific way to end the day.

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Becoming Needy

As a caregiver who is regularly trying to assess where Kate is on her journey and the significance of the changes I observe, I also recognize the impossibility of define clean breaks representing the transition from one stage to another. There is just too much overlapping. I think what happens is that I have to notice a variety of specific things before I have a sense that she has made any significant changes. That is what has happened over the past few months including the past few days.

When I think about the specific things she has done, they aren’t sufficient by themselves to make me think we are at a new stage of our journey. I have commented on Kate’s increasing dependence on me, but it seems like it’s more than just dependence. She seems to be entering a stage in which she is needier than she has been in the past. I say that based on the increasing number of questions she asks. They aren’t simply about people’s names. For example, yesterday she got a glass out of the kitchen cabinet and wanted ice. She couldn’t remember where to go for ice. At the time, we were standing at the island directly across from the refrigerator where she has been getting her ice for 21 years including a few hours before. As with the loss of names, this doesn’t mean that she has forgotten and will never remember how to get ice again. It begins with one instance and gradually becomes worse. She also shows signs of forgetting which light switch to use to control a specific light or fan. Within the past couple of days she asked me where to turn off the light in a hallway to the bedrooms, a switch she has used multiple times each day for 21 years.

Another indication of her neediness, occurred yesterday when she told me she was glad to see me after I returned home from the Red Cross. It was just saying it. It was the sound of her voice that conveyed how much she meant what she said. It is also in the frequency with which she tells me how glad she is that we met at TCU.

One more of many examples is something that happened last night. As I got ready to take my shower, she called to me. When I reached her, she said, “What should I do?” I told her it would be a good time to get her night clothes and relax a little before going to bed. She looked a little puzzled. I asked if she would like me to get her night clothes. She said she would. Then she followed me to her room where I saw a gown on the bed where our housekeeper had folded it and left it for her. I asked if she would like that one. She said yes, and we went back to our bedroom. A short time later, using her hand signals, she asked if she could use her iPad, something that she needn’t ask at all.

About thirty minutes ago, I took her to the hairdresser. When we left, she was carrying a pair of pants and a wash cloth with her. When we arrived, she asked (again with hand signals) if she should take them in. I told her she could leave them in the car.

All of these things tell me she is not only more dependent, but feeling confused and needy as well. As these changes take place, I feel an increasing desire to help her. That seems like a pretty natural feeling to have after fifty-five years of marriage.

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Another Good Visit with Friends

Tuesday, Kate and I drove to Nashville for a visit with our long-time friends Ann and Jeff Davis. We have had an unusual amount of social contact in the past week. Both of us have enjoyed being with close friends. I wasn’t surprised that this visit was also a good one. Kate was very actively engaged in conversation. That was mostly when she and Ann were talking to each other. It is much harder for her to participate in a conversation with all of us. I suspect part of that is not being able to easily follow what is being said. I also think it’s because we quickly move from one person to another. I know this requires a lot on her part. Despite that, she held her own and enjoyed herself.

Although Kate can carry on a conversation, her memory loss means that she no longer retains many bits of useful information. For example, she loved and admired her mother and talks a lot about her. With her memory loss, she has forgotten most of the specific things about her mother, but retains her feelings and impression of her. Thus, she communicates what a special person her mother was, but the examples she uses are often inaccurate. Of course, these are things that the typical listener would not catch, but I do. This makes me think of fiction writers who have created characters and situations in which they are placed. The facts may be fiction, but they often tell a truth about life. Kate is doing something similar with people and places. It doesn’t tarnish my own satisfaction that she is able to function in a very normal way.

As we drove away, I commented on what a good visit we had. Kate agreed. Then she said, “What is her name again?” I told her, and she said, “And his name?” I told her, and she asked, “Where are we?”

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At Home to Replace the Sitter

Today was my day to donate platelets at the Red Cross. When I got home, the first thing the sitter said was, “She is so smart.” I said, “I know she is.” Then Mary explained why she said that. She told me that she was watching a TV show with a judge in a courtyard scene when Kate said, “That’s not right. It’s . . .” My Kate, always the English teacher, had corrected the grammar used by someone on the show. Mary added, “And she wasn’t even watching the show. She just heard it.” I told her our grandchildren could tell their own stories of being corrected by Nan. Then she said, “Last week, she corrected me.” I didn’t tell her I have been corrected quite a few times over the years. I love knowing that she is still able to detect errors in grammar.

After Mary left, I walked over to Kate. She said, “I’m so glad to see you.” I said, “I’m glad to see you.” Then she added, “I really mean it. I feel so much better when you are here.” When I had walked in the room, it sounded like the two of them were getting along fine. I said, “But you like Mary, don’t you?” She told me she did, but “it isn’t the same.” I gave her a hug, and she said, “I really mean it.” One of the many things for which I am grateful is that Kate is so loving and appreciative. That strengthens my desire to be the best caregiver I can be. She makes it easy.

After that, she said she wanted to brush her teeth before leaving. As usual, she didn’t even ask about going out, she just assumes when I return we will leave together. So far that is what we have done every time I have come home after the sitter has been with her, never because I initiated it.

In a few minutes, I heard her call me from the back of the house. When I reached her, she said, “Where are we staying tonight?” I told her we were going to stay “right here in our own home.” She said she thought so. I walked back toward the kitchen and heard her call again. This time she pointed to a tube of toothpaste and her toothbrush and asked (using hand signals) if she should bring them with her. I told her I thought we could leave those at home. She said, “I thought so.”

When we got in the car, she asked, “Where are we right now?” I told her we were at our house in Knoxville.” Once again, she said, “I thought so.” She may have, but I know that today she has asked that quite a few times. Obviously, she is not sure. As I have said before, she doesn’t show any signs of frustration when she asks. She seems to be adapting well. Something else to be grateful for.

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Yesterday’s Experience with the Sitter

I’ve noted before that Kate has received the sitters quite well. There have only been a couple of times when she seemed hesitant for me to leave. One of those occurred yesterday. She was getting along fine yesterday morning. When the Anita arrived, she didn’t greet her as warmly as usual, but nothing seemed strange. When I said I was getting ready to leave, Kate said, “I want to go with you.” I told her I was going to Rotary and the Y and that she and Anita could go to Panera or stay at home and do whatever they would like. She told Anita she would like to go to Panera.

When I got home, Anita said Kate was resting. She said that Kate didn’t talk much and that she had not tried to push her. I told her that was fine. She doesn’t talk a lot with me. Then Anita told me that Kate didn’t seem herself and suggested that maybe she wasn’t feeling well.

After she left, I went back to the bedroom where Kate was resting. She got right up and was ready to go out. She was perfectly fine, but I can’t help thinking that she was just reacting to not being with me.

Whatever was going on, I feel the need to see what I can do to avoid this again. There are a few things I can think of suggesting to Anita that might help. For example, we have several photo albums in the family room. She could ask Kate to show them to her. I suspect Kate would love that. She could ask Kate about her family or growing up in Texas. Her memory for details is poor, but she has strong, positive feelings about her family, especially her mother. I’ll get her to try that next time.

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Signs of Confusion

Kate’s imagination was active over the weekend. Before we got out of the car for lunch yesterday, she had a look on her face that signaled deep concern. She said, “I just don’t know what to think.” As often happens, she couldn’t explain what had happened. She said something about our daughter, Jesse. I asked if she thought something had happened with Jesse and her husband, Greg. She nodded. I said, “Did you think they were separated?” Again, she nodded. I told her everything was all right, that they had not separated. She said, “I must have imagined it.” Periodically, she has had experiences like this, and she seems to grasp that the origin is in her mind.

As we were leaving the house for dinner last night, she specifically went to our bedroom and turned on the lamp on the table next to here side of the bed. She asked if she should turn on the one on my side. I told her I thought we could leave it off. As we walked through the family room, she asked, “What time are they coming?” I told her we weren’t expecting anyone, that we would have the house to ourselves. She didn’t say anything else, and I didn’t ask.

While at Panera this morning, I received a phone call from Scott Greeley. We arranged for the Greeleys to visit us this Saturday. When we hung up, I told Kate it was Scott and that they would be in Knoxville on Saturday for lunch. She said, “Good. I really like them.” Then she added, “What’s her name?” I told her. Only moments later, she said, “Jan.” I said, “Right.” Then she said, “I know that you know her name; I just wanted to let you know I got it myself without asking you.” She had apparently forgotten that just moments before she had asked me for Jan’s name.

When I got home from Rotary, the Y, and the grocery this afternoon, Kate was ready to get out of the house. As she has done a number of other times recently, she was carrying a night gown, a robe, a pair of pants, and a top. She noticed that I was taking 6 new pairs of socks out of their packages and asked that I give them to her. She did not have her iPad and a cup. I got a cup and then used the Find my iPhone app to locate her iPad. When I returned to the kitchen with the iPad, she was still holding the clothes along with the socks I had just bought. I asked if she were planning to take the clothes with her. She indicated she was. I told her I didn’t think she would need them. She said that would be fine. I suggested we leave them on the love seat in the family room until we returned. She put them on the love seat. As we started for the car, she picked up the robe and brought it with her. It’s sitting in the car right now.