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Talking About Her Mother

We are sitting here in the family room doing our separate things. She is working on her iPad. I am working on photos from Chautauqua before creating a slide show of our recent stay there. She just mentioned that we had done so many good things in our marriage. Then she said, “I know I’ve said this before, but I’m so glad we did what we did for my mother.” (She is referring to our bringing her mother to live with us in our home where she had 24/7 care for almost five and a half years.) This is a recurring theme I have heard for a long time. She also frequently says what a special person her mother was and how much she did for other people. There have also been times when she has imagined that someone has said something bad about her mother. In one instance, she said she was glad that I had stood up for her mother when some boys were saying things about her.

Her mother really was a special person. I think it is now that she is fully recognizing that.

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Deja Vu

I haven’t mentioned anything about Kate’s deja vu experiences in quite a while, but that does not mean they have gone away. I continue to see the same pattern as always. She will see people in a restaurant, on the street, or just about any other place and say something like, “There he goes again” or “See that woman (couple, family). She’s always there.” She also remembers places we’ve never been before. For example, two weeks ago we stayed in a Courtyard in Buffalo on the way to Chautauqua. She said she remembered some of the surrounding buildings and the room we stayed in although this was our first time there. Two days ago we visited someone we have known here at Panera. He and his wife moved into an assisted living facility while we were in Chautauqua. As we walked down the hall to their apartment, she said she remembered the hallway and the pictures on the wall. On the way back from Nashville a few weeks ago, a couple on a motorcycle passed us. She said she remembered them.

Frequently, Kate does things that I think are both cute and at the same time cause me to feel a little sad. For example, in the past few months she has occasionally taken the cable out of the plug that goes in the wall to take with her to Panera. It is unusual in that she doesn’t often do that much planning. Apart from that, of course, is that the cable will do no good without the plug.

More typically, she just comes into the kitchen and announces that she is ready. I know what she means. She is ready to go to Panera. I don’t really know exactly what motivates her to get ready for Panera. At first, I assumed that she thought we had talked about going there. Now I am beginning to think it relates to the fact that we go back and forth from home to Panera and back again so often. A related factor is that this often occurs right after she has come in from the yard, showered, and dressed. It seems a little like a stimulus/response pattern that has developed. This happened just before we came here about thirty minutes ago. It always occurs when I have gotten into something; so I stop and pack up our things to take to Panera. That is really no problem; it just means that I am regularly shifting gears after getting settled.

The sad part is knowing that her behavior is a direct result of Alzheimer’s, and that it just gets worse all the time. Even as I say this, I feel the need to add that she is usually in a good humor as she is right now. She is happily working on her iPad. Strangely enough, she hasn’t had a problem losing the puzzle because she hit the wrong button. That has been an issue for a while now.

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Signs/Symptoms of Alzheimer’s

We arrived at Panera about twenty minutes ago. As I was waiting in line to pay for two drinks, Kate went to the drink dispenser to get a Dr. Pepper in the cup she had brought with her. She sat down at the table where I had put my cup and her iPad Before I had time to order, she went back to the dispenser with her cup. In a couple of minutes, she returned to our section but didn’t know where to go. I pointed to the table where she had been and where our things were. Then I noticed she was not only carrying her cup, she had picked up another cup with a top on it, and it was half full. Then she took off the top and poured the contents into her cup. Spontaneously, I asked where the got the cup, “from another table?” She said, “Of course, not.” I didn’t say any more. I knew that she couldn’t tell me, but the only way she could get a cup was to get one from the person at the counter where I was waiting. All I can think of is that she picked up someone else’s drink.

Shortly after I got to the table, she looked at me and said with a happy face, “Are we really going to Chautauqua?” I told her we weren’t but that we had just been there and had a great time. I also said, “It would be nice to go back, wouldn’t it?” She agreed.

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Challenges of Caregiving

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.

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Asking Permission

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.

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Travel Report Chautauqua 2017

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.

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Two Good Days

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.

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A Sad Thing

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.

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Irritability

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.

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Confusion

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.