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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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More Signs of Sundowning?

Since returning from dinner, Kate and I have been sitting in the family room. She has been working puzzles on her iPad. I have been watching the news. She has had a little problem taking her pills at night. It seems to cause a little reflux. I decided to divide her pills so that she takes half now and the other half a little later.

After she took them she got up and went to her room. She came out in a few minutes with another top over the one she had been wearing. She indicated she was ready. I asked her, “For what?” She told me, “Anything.” I told her I thought she was going to get ready for bed. She said it was too early. Then she went to our bedroom and said, “I’m just going to lie down in bedroom with my iPad for a while.”

I walked back to take my medicine. As I was leaving the room, she called my name and pointed to her iPad. I didn’t know what she was communicating and walked over to her bedside. She asked, “Should I take it with me?” I told her we weren’t going anywhere now. Then she asked me what she should do with her iPad. She asked if she could just put it down beside the bed as she usually does. I told her that would be fine

This is another occurrence of her acting as though we are going someplace and/or that we have spoken about doing something when nothing of the sort has happened.

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Progress on the clothes front

As I have so often mentioned, one of my biggest challenges has involved Kate’s clothes. Recently, she has been more willing to accept my help in selecting clothes as well as my asking her to change when I think what she has selected/put on is not appropriate for the occasion. I have two examples from this morning. She met me in the family room dressed in a shirt that she wears to work in the yard and a nice pair of slacks. I suggested that the slacks were too nice for the yard. She went back to change. I went with her and found an appropriate pair for the yard. I told her I was ready to take her to Lowe’s anytime she wanted. We came back from Lowe’s about 10:30 and decided to take an early lunch. She was dressed in her yard clothes. (I thought she was not even well-dressed for Lowe’s, but I let this go.) She came in and took a shower, then changed clothes. When she was ready to go, she was wearing an old matching sweatshirt and pants. Obviously not summer attire (the high today is supposed to reach 97). They didn’t look much better than what she had on previously. I reminded her that we were going to lunch. I would have been surprised if she had remembered. I told her we should look for something else to wear. I went to our bathroom where she had hung a top before we went to Texas. Then I found the pair of slacks I had asked her not to wear in the yard. I gave them to her. She said, “This is what you want me to wear?” I said yes. She said, “Gotcha.” This is a real achievement. She offered no complaints or resisted in any way. This is progress for me, but I know this is a step back for her. I wish it could be otherwise.

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What Happened Next

I just came back from Kate’s room/office. She had been cleaning up. There were no clothes on the bed, and most of the clothes on the floor were gone. I said something about her cleaning up. She acknowledged it and continued her work. I decided to let her continue because she seemed content. I believed she was not going to be as interested in watching one of our recorded programs. I am now going to put the chairs back and plan to listen to some music after taking a shower.

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In The Yard Again

Kate has spent a lot less time in the yard this spring than she did last spring, summer, and fall. Today seems like the old days. We both woke up early this morning (a Saturday) when we would normally sleep a little later. I was up at 5:00 and walking at 6:10. When I returned home at 7:20, Kate was working in the flower bed in the front of the house. She remained out there until 9:00 when she came in. After lunch today, she expressed an interest in going to Lowe’s to buy more plants. I took her. When we got home from Lowe’s, she went outside and remained there until almost 6:00. We went to dinner and got home about 40 minutes ago. She went back to the yard where she is pruning. While I don’t believe the pruning is necessary or that we need more plants, I am very happy that she seems to be back into yard work. She enjoys it, and it prevents boredom that occurs when she sits inside and works jigsaw puzzles on her iPad.

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Problem Sleeping

I woke up at 3:16 this morning and was unable to get back to sleep. I finally got up about 4:45. My mind has been absorbed with Kate’s deteriorating condition. I am working harder to keep her entertained. I find it both challenging and discouraging. For the first time since I have been keeping this journal I find myself recognizing that she is entering that stage of Alzheimer’s that people most commonly associate with the disease. She is still able to hide her illness from most people, but she is becoming more detached from life than in the past. She hasn’t gone to church in a couple of months. I passed up the past two symphony concerts because I knew she would not be interested. I have declined a couple of other engagements because I knew it was not her thing.

More importantly for me, her whole mood has been changing over the past 2 months. I don’t see any spark of joy at anything. She can get up for certain social situations. She did that in Miami. She displayed some of that on the cruise but not much. She just doesn’t seem to be happy. I keep looking for the right word to describe her. She is listless, forlorn, bored.

At the same time, she is also more irritable with me. She snaps at me when I haven’t done anything to justify her reaction. She sees this herself I am sure. I say that because she often follows such reactions by telling me she loves me or grabbing my hand and holding it fondly.

I also see more moments in which she has imagined things that haven’t happened. Late yesterday afternoon I walked into our bedroom, and she said, “I am so angry.” I asked her why. She said because someone had said something (I don’t remember what that something was, but she was specific.) about her mother. When I questioned her further, I learned that she thought I had told her about someone who had said this about her mother. I assured her that I hadn’t said anything like that. She was puzzled and finally said, “Maybe I imagined that.” She has had several of these situations in the past week.

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A Different Story of Imagining

Today as Kate and I were on the way to lunch, she said, “”Are you going to notice that woman (or was it a couple?) and her (their?) child?”I said, “”Is this somebody you have noticed before?” She gave me a disgusted look. I said, “I’m not good at remembering these things.” She answered, “”Well, you don’t pay any attention to the things I say.” I started to say something in response, but she didn’t want to “talk about it.”

Shortly after we ordered, she commented that the mother and her child were not there. She pointed to the place where they usually sit and asked me if I remembered that she had gone over to the table and told the mother how cute her child was. I told her I didn’t remember. She went on to tell me that when she told the mother that her child was cute, the mother told her she remembered her saying that. Kate said she asked, “Have I told you that before?” The woman answered, “”Two times” and seemed a bit annoyed. She said that when she told me about it, I said, “”If it happens again, I am going to go over to the woman and tell her that you have Alzheimer’s and can’t help it.” Then I said (that is, today when she told me this story), “”I wouldn’t have said that.” She said, “”You just don’t remember. You remember everything, but when it involves me, you don’t remember anything. If it’s somebody else you remember, but not when it’s me.”

While I have mentioned other occasions when she has imagined I had told her something, this is the first time I recall her having such an elaborate description of something that had happened and my reaction to it. I don’t know that this signals anything of significance, but it is something different.

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Coordination Difficulties

We have nothing on our agenda today until we go to Casa Bella this evening for their Christmas dinner. After going on my walk, I asked Kate if she would like me to take her somewhere like Panera, Starbucks, or Barnes & Noble. She said she wanted to go to Lowe’s sometime. About 15 minutes ago she came into the kitchen and said she wanted to go to Lowe’s. When we got in the car, she said, “”On the way back, I want you to take me somewhere to get a muffin or something to eat.” I told her we could go to Panera now but thought she hadn’t wanted to go. I told her I would like to do that. She liked the idea only she was dressed in her sweats for yard work. I suggested a change. I came in the kitchen to write this post. In a few minutes she came in with a pair of shoes in her hands and said those were the only shoes she could find. I told her she hadn’t changed clothes. She said, “Oh.” Then she turned around to go to her room to change. This coupled with my sense that she has been unusually lethargic over the past few days seems another warning sign of impending changes.

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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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Some Changes

I was just about to write a post that would say that a number of things have happened over the past few days that make me think Kate is making a shift downward. The first sign is that she has seemed depressed and not as upbeat. The other is confusion which I have mentioned in an earlier post today.

Just before I started I heard her call me. She wanted me to come to her office. When I got there, she said she wanted me to see her closet. Her bed had no clothing on it, nor was there any on the floor. Her closet looked beautifully organized. She thanked me. When I asked why she was thanking me, that I hadn’t done a thing. She said, “You bought me the hangers.” For over a year she has periodically asked me for more wooden hangers. Each time we have gone by Bed, Bath, and Beyond. Each time I think this is the end. Then a while later she says she wants more. I am surprised she attributed her success to me. This is something she has done on her own. She said, “I feel so much better. I can’t tell you how much better I feel.” I reinforced how much better her room looked and that I know she must feel better. This is not the first time she has cleaned up, but it never lasts too long. I am wondering if in her depression of the past few days, she hasn’t directed her attention to cleaning up which made her feel better. Whatever it is, I am grateful. It makes her feel a lot better. It makes me feel better as well.