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More Frustration, Boredom, and Discouragement

Kate was up early again this morning and ready for Panera. She is not in a good mood. She is depressed. As usual, she won’t talk about it at all. She just shrugs her shoulders when I ask what is wrong, how I can help, etc. We spent an hour and a half at Panera before she wanted to come home. She is in bed resting. I am going to get her up in a few minutes to take her to lunch.

I have also bought tickets to a movie at 3:00 this afternoon. This is a movie she told me Friday she didn’t want to see. I am going to try it anyway as a diversion, a way to get her someplace other than home or Panera or one of our restaurants.

Coupled with her boredom this week has been more irritability than usual. In fact, I have observed what I take to be less humor in responding to me and a more genuine expression of irritation with me.

I can’t recall a week during which she has been this way before. I must admit to being discouraged this moment. I am hoping she bounces back soon but also worried that I am seeing signs of a further transition.

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Frustration and Boredom

My follow up to yesterday is only to say that it things didn’t get better for the second day in a row. As always, I try to figure out why when things are not going well. Sometimes I have a clearer idea than others. Often I’m just not sure. Yesterday, for example, she seemed to start out with a less cheerful demeanor. That was even before any particular event occurred that might have brought her down.

That was different once we got to Panera where she was working on her jigsaw puzzles. Repeatedly she kept hitting something that took her out of her puzzle. That particular screen has a “Back” arrow in the top left-hand corner, but she doesn’t see it. I just hit it, and she is back to the puzzle. Other times, it is a little more difficult, and I just hit the “Home” button on the iPad. That takes me to the screen with all the app icons. I select the one she had been working on (if I can remember it), select it, and give it back to her. As noted in the past, she never asks for my help. She just closes the iPad, puts it on the table, and looks frustrated.

To make matters worse, we had a rainy day. That meant that she couldn’t work in the yard. Since her two main activities were not available, she spent more time in bed. I tried to interest her in a movie, but she didn’t want to go at least to the one that I thought might be the best possibility for her.

We went to our regular place for pizza. When we returned, I put on a Katherine Hepburn movie. She seemed eager to watch. A few minutes into it, she said she was sleepy and got into bed fully clothed. She didn’t get up until this morning. She seems normal this morning. That means she isn’t in a bad mood although we got off to a rough start when she had dressed in some clothes that I didn’t think she would have wanted to wear since we are driving to Nashville to have lunch with our friends Tom and Angie Robinson. This was one of those times I put clothes on the bed for her. I took her to the room and left her to put them on.

When she came out she was wearing the same thing she had been wearing. That happened two times before we got it right. You might think the easy answer is for me to stay with her while she dresses; however, she doesn’t like for me to do that. She feels she doesn’t need my help.

We are now at Panera before driving to Nashville. On the way here, I decided to tell her that today is my birthday. (Jesse had sent me a text and plans to call while we are on the way to Nashville. I didn’t want Kate to learn about my birthday that way because I feared that she might feel bad for not remembering.) I said, “Today is my birthday. I am 77. Did you ever think you would be married to someone that old?” She said, “I was just thinking that.” That is all she said. No surprise. No emotion. It doesn’t make me sad for me, but for her.

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Not a good day

We have just returned from dinner at Chalupas, our favorite Mexican restaurant. We go there about once a week, usually on Monday night. Sometimes I think of it as a good place for Kate when she is down. Tonight was one of those occasions. I wish I could say that the experience uplifted her spirits. It’s not just the food. In fact, it’s not even primarily the food. We like the owner and his family, all of whom work there at least from time to time. School is out, and all three children were working tonight.

I wish I could explain why Kate has been down today. I do know that she seemed all right this morning when we were at Panera. The first sign came just before noon when I told her that it was time for me to leave for Rotary. She didn’t say a word, but she looked dejected. This follows a few recent signs that she is bothered when I need to go somewhere. She feels trapped at home.

The need to get out comes up periodically in the afternoon. She comes into the kitchen which I use as an office and asks, “What can I do now?” As I noted in a post yesterday or day before, I generally give her options. The one with which she connects is always going to Panera. That occurred without words this afternoon when I returned from Rotary. She met me in the kitchen and simply said, “I’ll meet you outside.” That is her instruction that she is ready to go to Panera. I told her I would be right with her. I packed up my computer, our iPads, our cups, and met her outside. We were at Panera about an hour when she was ready to leave. During the time we were there, she was experiencing frustration with her iPad. The problem continues to be that she hits a wrong button while she is working a puzzle. That takes her to a screen that she doesn’t want. She doesn’t know what to do. She never asks for my help. She just groans and/or closes her iPad and puts it on the table. Often she lets me (somewhat reluctantly it appears) to get her puzzle back. She then works a while longer until it occurs again. After several tries, she is ready to leave. That is exactly what happened this afternoon.

On the way home I told her that I would drop her off and then go to the AT&T store to see about a new cover for her iPad. She has an old one that won’t prop up so that she can more easily work puzzles. When I told her this, she told me she thought we were going to eat. At that time it was only 3:50. She looked dejected and made audible groans which is common. I tried to talk with her and look for a way to help. She didn’t want to talk at all. This is actually an extension of an old habit she had prior to Alzheimer’s.

When I got back home, she seemed even more discouraged. I asked if she would like me to play a recorded show of Golden Girls. She wasn’t excited about that but agreed. At 5:30, we went to eat.

Right now we are in our bedroom where I have the PBS Newshour on. Kate is in bed working on her iPad. She seems content at this moment. No groans. No dejected looks. I hope this continues. Ordinarily, we do this routine, and she seems to enjoy it. I hope that is the case tonight.

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Taking stock of where we are

As I mentioned before, my moods change with Kate’s moods and behavior. At the moment, I am in a somewhat sad mood. This relates directly to what I perceive as a shift that Kate is making to the kind of behavior that we commonly associate with someone who has Alzheimer’s. She seems more distant than usual. This is difficult to tell because she has exhibited signs of distance from things going on around her for a long time. It just seems like they are even “deeper” or more distant than in the past. I find this understandable since she has so little short-term memory, her long-term memory is also poor, and she is unable to comprehend so much of what goes on around her (TV, movies, plays, conversation).

My feelings right now are at least partially associated with a couple of things that happened during the week. The first involved my brother Larry. He came to Knoxville last Sunday afternoon. We had dinner together. The next morning we met him at Panera. The three of us talked for a while. Then we came back to the house where Kate remained outside to pull leaves while Larry and I talked. I left to attend Rotary. Larry was preparing to leave for his farm but went outside to chat with Kate before leaving. When I got home after Rotary, I asked her when Larry left. She didn’t know. I probed a bit, but she was unable to tell me anything. She did not appear to remember that he had been here.

The next day we visited our friends the Davises in Nashville before visiting with Ellen. I had told Kate several times over the previous two or three days that we would be going to see the Davises. I reminded her the morning we left. We talked about it in the car as we left. When we arrived at their house, she didn’t know where we were and asked, “What now?” I told her we would go inside and visit with the Davises. She said, “Tell me their names again.” I did. We went inside and talked for about an hour. Then we went to lunch for another hour. When we got in the car to leave, she told me how much she enjoyed the visit. Then she asked me to tell her their names again. A little later she asked, “What is your brother’s name again?”

Today we went to a Live in HD at The Met production of Der Rosenkavalier. This was Rene Fleming’s last Met performance. It was outstanding, but Kate wanted to leave at the end of the first act which we did. I had noticed she seemed bored. She yawned audibly two or three times during the first act. Although she was not very loud, the people in front and in back of us could certainly hear her.

We have now seen quite a few operas. It was the Live in HD productions that really generated her interest in opera. Today it made no difference. I knew that she was tired going in, but I suspect it was more than being tired. It was a complex comic opera. I know she must have been confused and tuned out. I fear this is just the beginning of things to come.

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Boredom but Reluctance to do Some Things

Yesterday a representative of the Chautauqua Foundation, visited us in our home. We had recently made a financial contribution to the Foundation. He was calling on several families in the Carolinas who has made gifts for the renovation of the amphitheater. I had mentioned his coming to Kate several times, once a couple of weeks ago when he first contacted me by email and again the day of his visit. She told me I should meet with him by myself. I told her that he was coming to thank us and that it would be nice for her to be included in the visit. She reluctantly agreed. This is a good illustration of her not wanting to engage in a type of social interaction from which she could and does benefit.

When he arrived, she was quite cordial and engaged in conversation. There were times that I held back saying something because she wanted to talk. The important point is that she was enjoying herself. She got to talk about Chautauqua with someone who represents that institution. This was right up her alley. If I hadn’t pushed her into being a part of the visit, she would have missed a rewarding experience. Of course, I am sure that today she does not remember anything about it. From my standpoint I just like to see her days filled with as many moments of pleasure as possible. Sometimes I give in to her wishes. I just did that about an hour ago.

She had been resting since we returned from Panera earlier this morning. She told me she wanted to go outside. I told her that was fine. She asked if she could have a Dr. Pepper. I told her that she could do and have whatever she wanted. Then I told her I was thinking of our doing something different this afternoon. I told her we would go to lunch and then I thought we would go to the zoo to see the major updates that had made. She just shook her head “no.” I encouraged her and said that I would really like to go and would like her to go with me. She shook her head again. She seemed sufficiently resistant that I said, “That’s all right. I won’t make you go.” I gave her a hug, and she went outside where she has been for just over an hour.

For quite a long time I have tried to keep her involved in social activity. The one that works best is eating out. In that case, she is attracted by the need to eat. A different kind of example involves my volunteering to the Visitation Committee at church. I did this about two years ago. It turns out, however, that she doesn’t care for this particular social activity. Now I am going by myself
I have also explored the possibility of our volunteering to do something involving Children’s Hospital. I was thinking that she enjoys children so much that visiting with the children might be something she would accept. I have taken any action beyond initial exploration. I have been afraid that she would not want to carry through and that would be a problem for the hospital and the children. They need someone they can count on.

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Moments of Boredom

I came home directly from the Y in order to take Kate to Panera. She was up and dressed in black slacks and her Harrod’s sweatshirt that she bought when she and Ellen were in London in 2002. She had the sweatshirt on backwards. I asked her about going to Panera, and she said, “”In a little while.” I got on the computer and checked email and took care of registering for a platelet donation this afternoon. At 10:15, I went back to see if she were ready. She indicated she didn’t care. It was obvious that she was down. I asked her about it. She said she was bored. I said, “”Then let me take you to Panera, or we could watch a BBC program on TV.” She said she didn’t want to watch a TV program. She agreed to Panera. I came back in the kitchen. Shortly she came into the kitchen wearing the same clothes. She said, “I hope I don’t run into anybody I know at Panera.” I told her I thought we would go directly to lunch from Panera.

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Possible Sundowning and Other Things

I have heard other people talk about Alzheimer’s patients and sundowning. I have wondered if that is something that Kate is likely to experience. Up until now I had not noticed any signs of what I believe to be sundowning. There have been several times recently when I have wondered. These instances occurred when we had planned to go someplace for the evening. When I mentioned that it was time for us to get ready, she has reacted very negatively. The times I remember involved going to a concert. One was the symphony. The other, I think, was a local choral group. This past Saturday it happened again. We have missed the last two symphony concerts. I was quite interested in the one this past Saturday because of the soloist (a former child prodigy who is now 33) who was playing the Mendelssohn violin concerto. The orchestra was playing the Tchaikovsky 5th Symphony. I thought this would be a concert that Kate might enjoy; so I made reservations to a luncheon with the soloist this past Friday. We went, and she enjoyed being there to meet her. We talked about Saturday’s concert. She was interested. I mentioned it to her several times on Saturday. Then about an hour before we were to leave I told her it was getting time for us to get ready. This made her very unhappy. In fact, she had gotten out of the bed and then got back in and pulled the covers over her. I tried not to force her to go but said, “”But you had told me you wanted to go. You enjoyed meeting the soloist at lunch yesterday.” I went on to tell her that she didn’t have to go, that I didn’t want her to be upset, that I would go on. After a few minutes, she decided to go with me. She ended up enjoying the concert and got to speak with a number of people we know. It was after this that I began to draw an association with sundowning. In the future I will be more careful to pay attention to her behavior around the end of the day.

The second thing that happened was yesterday. I had come home from church right after Sunday school as I have been doing for several months now. When we got home after lunch, Kate worked on her iPad. Then she lay down to rest. When she got up, I could tell that she was down. I decided to see if she would like to eat dinner a little early. She said she would. She was silent in the car going to the restaurant, and she wanted me to be quiet. As we were about to get out of the car, she said she was “down.” Then she went on to say, “I just can’t believe they would say that.” (I should also mention that in the past 24-48 hours she has mentioned something that indicated she thought I was checking with some friends in Nashville about something. I presumed this involved this same issue.) I asked her if she were talking about the same couple she has mentioned before. She nodded. She seemed seriously disturbed. When we had ordered, I reminded her of something I had said a week to ten days ago. I said that I really didn’t want her to have to struggle so because I believed she had had a dream about the whole thing and that I was unaware of our friends ever saying anything about her mother, certainly not to me. She appeared to accept it but with a little doubt.

This morning while we were at Panera she seemed in a good mood. At one point she volunteered that she had decided I was right, that she had just dreamed the whole thing (again without saying what the “whole thing” was) and that now she couldn’t even remember what they said. She told me she could remember my telling her it was a dream but not what they said. What I am hoping is that she will not call up her memory again so that we have to go through the same process again. She told me she felt better about our friends.

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Being Tired

Two days ago my post suggested a change for the worse in Kate’s condition. I hesitated to say that because the difference had been so minor, but in the last 24 hours I have noticed a difference in her that may confirm my original suspicions. Yesterday morning I came from the office to take her to lunch before going to Rotary. When I returned around 2:00, she was in bed. That is not something unusual except that she remained there until about 4:30. When she got up, I suggested that we go to Chalupas for dinner and reminded her that we were supposed to go to the December meeting of the music club. She looked disappointed. I told her she didn’t need to go. She accepted. She went into the family room and sat with her computer. It was not open. She just sat there. She looked very sad. I went in and sat with her on the love seat. I asked if I could do anything to help. She said, “You’re doing it.” We sat there in silence except for a few comments that I made. During this time all I could imagine was that she was discouraged about her Alzheimer’s and being bored. At one point, I reiterated that I wanted to help her but that she didn’t seem to want to talk about it. She said, “About what?” I told her that she seemed depressed. She said, “I don’t feel depressed at all. I am just tired.” I told her I felt better knowing that. We then left for Chalupas. She seemed to get along as she usually does. She was not talkative, and she seemed tired. She is often this way when she is hungry. All this seems like something that is different. She is more tired than usual.

When we got home, I showered and dressed for the music club. She got into bed. When I left, she was in bed and said that she was going to sleep. When I got home at 10:30, she was sound asleep.

This morning she was up at 6:00 and went back to bed. That much is normal. She just got up again and seems tired. Libby is coming today, and I have a lunch meeting at 11:30. I asked if she would like to go to Panera. She said she would. That was 30 minutes ago, and she just got up. I had told her there was no hurry. We’ll see how it goes today. We have a symphony concert tonight. She didn’t go last time. I wouldn’t be surprised if she didn’t go tonight.

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Anger or Jesting?

Yesterday afternoon before we were to leave for a movie, I walked into our bedroom where Kate was editing photos on her laptop. I said, “We’ll need to leave in about 5 minutes.” She yelled at me that she was ready. When that time had lapsed, I went to get her. She still seemed quite irritated. That continued in the car as we drove to the theater. I don’t recall exactly what she said, but she expressed her displeasure at the way I rush her when we are going places. As we started walking toward the theater from the parking garage, she said, “You tease me enough. I should be able to tease you.” She held my hand. Then as we sat in the theater, she also held my hand. It is as though she really was angry but tried to cover by suggesting she was teasing. Then she began to express her apology not in words but by being loving.

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Ups and Downs

Kate was down all through lunch. When we came home she immediately lay down in bed. I spent some time on email.

Prior to lunch I had looked for a movie and saw that The Flick was showing Seven Brides for Seven Brothers at 3:00. Kate said she would like to go. It seemed like it would be a good one for her. She loved it. When we were in the car on the way home, she said the movie had really lifted her spirits. It is a rather hokey 1950s movie. I enjoyed it as well from an historical standpoint. I was just pleased that it brought her out of her depression.

We had a couple of memory issues. We saw in the credits that Howard Keel and Jane Powell had starred in the movie. We commented that they were the only people we knew. In fact, Kate had said that the female lead looked like Jane Powell. As we were driving home, she was reading a brochure with information about the movie. She read that Jane Powell was in the movie. When I mentioned its being in the credits, she asked me what part she played. She had completely forgotten in that short time. Another incident occurred that has been common for most or all of the past 3-4 years. We past a pizzeria that I had not known before. When I pointed it out, she said, “Oh, I remember our passing that on the way to the movie.” We had not come that way going to the movie. She commonly says I have told her things that I haven’t told her.