There is nothing especially new to report, but I have been thinking about the challenges I and other caregivers have that other people might not think of. One of those is getting settled into doing something and then having to make a change. That happens when Kate is tired of doing what she was doing before I am finished with what I was doing. When that happens, I start to get my things together to go out (usually to Panera). That often happens in the morning when I am up and ready before she is. I let her sleep as long as she wants. Sometimes she gets up and dressed without my realizing it. When this happens, she walks into the kitchen (which is my office) and is ready to walk out the door. She gets a little irritated when I have to get my computer packed up as well as getting a cup for her as well as her iPad. I think of this as humorous given that I have usually been waiting quite a while for her to get ready.
Once we get to Panera she only wants to stay for about an hour, sometimes less and occasionally longer. In either case, I get engaged in something on computer. Periodically, I am interrupted by the need to help her recover a puzzle on which she had been working. I am getting used to these interruptions and find that they don’t present a serious problem. It does, however, require shifting back and forth in order to satisfy her need for a change.
As Kate and I were returning from lunch, she asked if she could pull a few leaves when we got home. I told her that would be fine. A few minutes later, she asked, “Now what will you allow me to do?” I said, “You sound like I’m your boss.” Then I said, “You can do anything you want to do.” As we drove into the driveway, she asked, “Can I work in the front (yard)?” I told her again that would be fine. She continues to ask permission rather frequently. She also frequently acts surprised when I say yes as though I never let her. The irony is that I still have never told her she couldn’t.
Today was our last day at Chautauqua. It was probably our last time here together. That thought has saddened me deeply today. At various times during the day (sitting on the porch for breakfast and checking email, walking the brick walk to and from the Hall of Philosophy, having lunch at La Familia and dinner at the Afterwards Cafe) I have thought, “This is the last time we will experience this together.”
Even with the sadness, I believe that I made the right decision to come this year and to leave after only one week. Today was another good day for us, but Kate was worn out last night. She was in bed at or before 9:00 last night and didn’t get up until about 11:00 this morning. Not only that but between lunch and the 2:00 lecture, she went back to bed. I had to get her up to attend the lecture. She would have preferred staying in bed but got up anyway, something that she has been doing for the past 6-12 months. Prior to that, it was very difficult to get her up. She gets up much more quickly now.
Returning from the 2:00 lecture at the Hall of Philosophy, she walked even more slowly than usual. We stopped by the apartment for a short time and then went to see the play “Noises Off.” Again, she walked very slowly to and from the play. She seemed to enjoy the play despite the fact that it is a farce. She generally doesn’t like that type of humor. This is something we have seen three other times. She enjoyed it each of those times.
It is almost impossible for me to imagine coming back with her if she declines as much in the upcoming year as this past year. There would be problems on multiple fronts. Just the travel itself would be trying. I know that it would be difficult for her to enjoy herself once we are on the grounds. That would affect my enjoyment as well. I would need to have help to take care of her. That can be arranged here. My contact at the Chautauqua Foundation has indicated that she could help in that regard. At the moment, I feel that it would be best not to come at all. It may be that it would work out for me during the following year although everything depends on Kate. It is simply too early to be planning anything too specific.
Yesterday and today Kate and I made it to the 10:45 lecture as well as both the 2:00 and 3:30 one. That made for two full days. Kate has been more upbeat and expressed more pleasure at being here than the earlier days this week. I do, however, believe it is time for us to go home. I also find it hard to imagine that we will be back (together).
In three minutes the symphony will play its only concert this week. I am disappointed to miss it, but this time my place is here.
I’ve observed a couple of other signs of Kate’s current condition since my last post. One was yesterday when she got up from her chair on the porch to go inside. We had been talking with our neighbor next door. She walked right by the door to our apartment although she had been sitting immediately next to it. I caught her and showed her the door.
Tonight we had a similar experience. She told me she thought she would go inside and asked if I would show her the way. Once again, she was sitting immediately outside the door. This one makes me even sadder because she had to ask for help.
This afternoon as we stood up to wait between one speaker and the next in the Hall of Philosophy she wanted to move to the aisle, perhaps to have a little extra room. That was only two seats past me. I watched the whole time to make sure she was seated before the next speaker began and that she did not move away. The she started moving away from our row to the back. I could tell that she had forgotten where we were because of the way she was looking around. I reached her just as she was about to take a seat in the back of the hall. When I got to her, she said something like, “I knew you would find me.” That is all that either of us said. I took her hand, and we walked back to the front.
For a long time Kate has teased me about trying to control her. It has always been tinged with a note of seriousness. Yesterday she expressed clear irritation with me. It happened as we were returning to our apartment here at Chautauqua from the afternoon lecture. She began as though we had already been having a conversation. That has happened before. She believes we have talked about something but haven’t. Her first references to a move to Texas.
This time she started very diplomatically. She said she wanted to tell me something, but she didn’t want to make me mad. I told her I wouldn’t get mad. She then said that I don’t consider how she feels about things, that I simply go ahead and make decisions for her. She illustrated that by noting that when she says, “I am hungry” I will say, “How can you be hungry. You just ate a while ago?” What surprised me most is that is a good recollection of a number of experiences we have had. In fact, it happened yesterday before we attended the afternoon lecture. At that time, it had been slightly over an hour since we had eaten lunch.
From this she continued to tell me other ways in which I tried to control her. At least one of those was something I had never done. I can’t recall what that was, but her mention of it reinforced my thinking that she had imagined some events or things. At the same time, she was also responding to something that is genuine. I do find myself taking charge of more things. I try, however, to let her be as independent as I can. One of my challenges is that there are some things that she is happy for me to do. In addition, there are some occasions when she is happy for me to do something that on other occasions she would resent.
I will need to be even more sensitive about these things in the future, but I am sure I will stumble along the way. I am taking this experience as one more indicator of the transition we are going through.
I am also asking myself. How much is my desire to take trips like this one to Chautauqua rooted in my own personal desires versus what I believe she would like. I think it is a combination of both.
For the third night in a row, Kate has not known where we are. We were at dinner at the Brick Walk Cafe. Kate was facing where she could see Bestor Plaza and all the people outside. I said, “I guess tonight you know where we are.” She hesitantly said, “At home?” I told her we were at Chautauqua. She was pleased. She obviously hadn’t remembered our being here. Memory problems are so interesting. She clearly remembers Chautauqua. The mention of the name brings out good thoughts, but she is unable to recognize that we right here on the grounds.
This fits with my suspicion that while we were in Lubbock in June, she never remembered where we were. Knowing this makes me wonder whether or not we should make any further travel plans. If she were showing signs of distress, I would clearly not consider traveling. As it is, she does have moments of pleasure every place we go. Much of the time she doesn’t express a lot of enthusiasm, but it comes out periodically. She liked the morning speaker. She didn’t say anything about the afternoon speaker. That was one that I didn’t enjoy myself.
The only other trip that is in my planning right now is the trip to Fort Worth for homecoming. That is around October 19. There are two reasons that I would like to make the trip. The first is that I expect that this will be her last trip home. Second, it will be her only opportunity to see a grandchild at TCU. Our oldest will be a freshman in September. Kevin and his family as well as Kate’s brother and his wife are also planning to be there. It just seems like an important trip to make. At the moment, I have hotel reservations but haven’t done anything else to prepare for the trip. I’ll wait another month to make a go or no go decision. Even then I will be prepared to cancel if necessary.
I am seeing little signs of just how far along Kate is. This morning after her shower, she came into the living room of our apartment and said, “I’m ready.” I asked what she was ready for. She said, “To go home.” I got up, put my arms around at her and told her this was our first day at Chautauqua and that we had a week to go.
She had said something like this yesterday, and I told her we were here. I know that last night and tonight at dinner, she asked, “Where are we now?” Last night, I asked her what she meant, in this place (meaning the restaurant, or . . .” She stopped me. I told her we were at Chautauqua. She said, “I know that.” I believe she really didn’t know that.
Tonight she asked the identical question. I told her Chautauqua. She smiled and said, “We are?”
I don’t know that I said this earlier, but when I found her this afternoon, she was quite calm and seemed to have enjoyed being with the man she was talking with.
She enjoyed the morning lecture and got along fine at the 2:00 lecture even though we were in an overflow room where there was only audio.
All-in-all she has had moments of pleasure and others where she seems tired and unenthusiastic about being here. The latter reaction reinforces my thought that this will be our last year.
This is a post I would rather not write. I am driven to do so by the possibility someone out there might have the mistaken idea that I am caring for Kate perfectly. I left Kate at the apartment this afternoon for about an hour and a half. When I returned, she was gone.
I wouldn’t have done this at all if I hadn’t gotten her out of bed this morning at 10:30 to get to the morning lecture at 10:45. That was followed by lunch, a quick stop by the apartment to brush teeth, and on to a 2:00 lecture with Bill Moyers. Before coming this year, there were two speakers I definitely wanted to hear. One is Alan Cooperman who heads the division of research on religion at Pew Research. I have read so many of his study findings and wanted to hear his presentation.
Knowing that Kate would want to have a break, I brought her back to the apartment. She said she was going to rest a while. I told her I didn’t want her to go anywhere. She said, “Oh, I wouldn’t go anywhere.” Of course, I knew she couldn’t remember.
When I returned and found her gone, I was panicked. It was daylight, and it is a safe place. On the other hand, it was beginning to rain. I knew she hadn’t taken an umbrella or rain jacket. The first thing I did was to walk across the street to the Brick Walk Cafe to see if she might be there. Then I walked around the Plaza and went into the book store. I came back to the apartment and checked again. I saw the neighbor in the apartment next to us and told her to be on the look out. I left to retrace my steps and still did not find her. I decided to contact security. I did so by going to the visitors’ center. They called security for me. I gave them a description of her. Then I went to the market here on the plaza and bought some gauze and hydrogen peroxide to clean up several cuts to my arm. I had taken a fall on the way back from the 3:30 lecture. There I told the people about Kate. I also told a driver of one of the small buses that circulate the area to be on alert for her. I told people at a dress shop in St. Elmo about her as well. On the way back to the apartment I saw a young man, Kyle, who was driving a golf cart and stopped him. It turned out he was with security and was out looking for her. As I was talking to him, I got a call from a man who said she was with him on Robert Street. I thought he was with security, but it turned out that he was with the Ecumenical House that is around the corner from our apartment. She apparently wandered over there. I will have to find out how he got my phone number and to thank him.
Kate was slow getting going yesterday but perked up during the church service. She liked the preacher and got the feeling of being back in Chautauqua. We had a nice afternoon. After dinner, I took her on a short walk around Bestor Plaza before going back to the apartment.
For the second night in a row she skipped the evening program. It was the opera on Saturday and the sacred song service last night. In both cases, she had planned to go until after supper. At first, she started saying that she might not go. Then finally she said she would go if I really wanted her to go. I told her I wanted her to do what she really wanted.
Saturday night, she went to sleep quickly and was on the way to sleep before I left. Last night, she went to bed, but when I got home she was still awake
This morning she was up around 7:45 and took her shower. As I did yesterday, I laid out her clothes for her. A few minutes after 7:00, I had gone out to get her a muffin and orange juice. After she finished both, she went to the bathroom to brush her teeth. In a few minutes, she came into the living room with her toothbrush and toothpaste in hand and said, “I’m ready.” I said, “Ready for what?” She said, “To go home.” I got up from the sofa and gave her a hug and said, “This is our first day here. We have a whole week ahead.” She said, “Where are we?” I told her and said I should have reminded her. She nodded and said, “I’m just sleepy.”
This is just another of her poor memory AND mine. I should never have referred to being here without specifying where “here” is. I know she can’t remember. Why can’t I remember that?