It is 9:44 pm, and I am in bed writing these notes so that I can put them in my journal. Before going to sleep, I have to report that today has been the best day in quite some time, perhaps weeks. We had only one bad moment when I came home from the Y, and Kate thought I had come in to rush her to get ready to go someplace. Actually, I was just saying hello and was going to check to see if she wanted to go get her morning muffin at Panera. She was working on organizing her clothes. I decided to leave well enough alone and went to the kitchen to check email. A little later we did go to Panera. While we were sitting there she told me the story I had already entered in this journal this afternoon. She said she was feeling good and that she had decided I was right about her dreaming about the incident that was causing her to be so blue (not her words). She said she couldn’t even remember what it was that had upset her. The balance of the day and evening she has seemed like her old self. I commented on how good she seemed to feel. She agreed that she did feel good. Now I FEEL GOOD as well.
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.
Yesterday Kate had her annual physical. In advance of that, I had written a lengthy letter asking a number of questions and updating the doctor about Kate ’s condition. It turned out that my letter had not gotten to the doctor even though I had mailed it a week ago. I was able to chat briefly with her just before she went in to see the doctor. In addition to letting her know the questions for which I wanted answers, we talked about my being included with Kate and the doctor during every visit. We accomplished this by the doctor’s bringing me in the examination room and telling Kate that she thought it might be good to have another person who could her what was said. Kate agreed. Now I expect this to be a regular part of all future visits.
Before joining Kate, the doctor and I talked about the possibility of Kate‘s seeing a neurologist. She said that would be fine. She told me that not many of their patients see a neurologist. She thought that was because they have a much larger practice of dementia patients. Most people with dementia go to a regular family practice physician or internist, and they are not as familiar with the treatment of dementia. That made sense to me. I did explain that I thought it might be a good idea just to check in with one and not set up routine appointments with one. She asked how Kate felt about it when we were together. Kate looked to me and I gave my nod of approval. We didn’t leave with a referral, but if I don’t hear from the doctor by early next week, I will be in touch to arrange it.
We talked about Kate‘s PremPro and that her insurance company no longer includes it in their formulary. Dr. Reasoner had talked with them, and they agreed to continue it. We also talked about trying to wean Kate off of it. Dr. Reasoner said that would take 4-6 months. We are going to start that right away by her taking 1 pill every other day rather than every day. I’ll start that tomorrow.
We talked about Kate‘s being bored. Dr. Reasoner asked if she felt depressed, Kate said no, something that did not surprise me. She agreed that she is bored. We talked about things she could do to relieve the boredom. Dr. Reasoner encouraged walking, suggesting that would also be good for weight control. She weighed in at 174. That is 8 pounds heavier than six months ago. The doctor mentioned the Shepherd’s Center. I told her we knew people there and would check it out. I had already mentioned to one of them that I was thinking of doing that.
On the way home, I asked Kate if she would be interested in exploring a support group. She expressed an interest, and I am going to pursue this with the social worker. Kate said she thought now would be a good time to do this. She had not been interested in the past.
We also discussed Kate‘s customary visits to her OB/GYN. We decided to have Dr. Reasoner take care of all the things that he has done in the past. She gave Kate a pelvic exam. She also scheduled a mammogram and a bone density scan for March 28.
I got home from Rotary about 30 minutes ago. Kate was seated in her chair in her office working a jigsaw puzzle on her iPad. I can’t remember all the dialog, but this is what happened. She was relieved to see me and asked if she could come out now. I was puzzled. She indicated that she thought I had told her to stay in the back of the house. I apologized and told her I never intended for her to remain in the back of the house. She was relieved but also a little peeved with me and told me she almost went to her bathroom to sit in the tub just to get out of the room.
I turned on the stereo in the family room. In a minute she came in with her iPad and her sweater and looked ready to go. It turned out that she thought we were going to lunch. I learned this while we were in the car. She had wanted to go to Chalupes. When she realized we were not going to lunch, she said Panera was OK.
A moment later she said something about “their” coming to see us and that she was going to say something about what they had said about her mother. I asked if she were talking about a couple in our church. She said she was. Once again she said something about what they had said about her mother. I told her I was unaware of anything they had said. She was annoyed. It appeared that she felt I knew but couldn’t remember. When I asked what they had said, she said, “”Let’s just not talk about it.” That is pretty much her standard response to almost anything I ask.
We are back home now. I wanted to add that this is one of those afternoons when she is feeling quite bored. She just looks depressed. Unfortunately, I didn’t take the iPad’s charger, and her battery ran down; so we came home about 30 minutes ago. I offered to show her my slide show of our trip to Africa. I thought it might interest her. She agreed, but her body language indicated she didn’t have that much interest. Finally, she came into the family room where I was setting up the show. After she sat down, she indicated that she was sleepy. I asked if she would like to rest before seeing the show. She said yes and is now lying down in our bedroom.
Tonight is a reception in connection with an upcoming symphony concert. We usually attend but have missed the last 2 or 3. I had thought we might go tonight. When I mentioned it to her this morning, she indicated she didn’t want to go. It was actually a little stronger than that. She was really indicating that she was not going.
Today seemed like a day of progress in recovery from our colds, at least for Kate . It is peculiar, but we both seem to have trouble early in the day but are better later in the afternoon and evening. It has been hard for me to determine how much of her listlessness is a result of her illness and how much might be a result of her Alzheimer’s. I suppose I will see in a few days. I think it has been a combination.
She is still asserting her independence but also showing her need for and acceptance of my help. Today, for example, I noticed that she had not taken her medicine. Instead of telling her that she had forgotten (which I usually do) I simply took the pills I knew she really needed and gave them to her. She never asked any questions, just took them. I might have thought she would ask where the others were, but she didn’t. She easily accepted my help. On the other hand, tonight when I gave her her medicine (she had forgotten to take it again), I told her to be careful because there were a lot of them. She said something to me that clearly indicated that she didn’t need me to tell her that. The reason I had done so was that earlier when I had given her the pills she had missed this morning, she dropped one of them in her bed and couldn’t find it.
I am sensing there is greater importance in my trying not to push her too much. After getting out of a movie at 2:30 today, I told her we needed to get to our haircuts. She expressed displeasure in that prospect. Normally she would be glad to get a haircut. It turned out she was tired and wanted to go home. We had been away from home since 10:00 this morning. As it turned out, I was wrong. When we got to the salon for our haircuts, we found out that they are really scheduled for next Tuesday. Thus she got to spend the balance of the afternoon (almost a full 3 hours) at home before we went to dinner. I have tried not to over schedule in the past, but this experience confirms just how important that is. She likes to have breaks at home and by herself (I think). I need to make sure she gets this time while also trying to minimize her boredom. It turned out that going to Panera, having lunch, and then seeing a movie was all she needed. It was time for a break, and she got it.
I continue to be surprised at some of her confusion. Yesterday, for example, she had gotten up from a little nap in her office. She came into the kitchen for something and was going back to our bedroom and asked, “”Do we have an iPad?” I think that she was momentarily forgetting that she has a new iPad to replace the one that was stolen last week.
Yesterday and today I have been drafting a letter to Dr. Reasoner updating her on Kate. It is a rather glum update as was my most recent update to our children and friends. For that reason I want to be quick to report that today has been a very good one. I’m not entirely sure what accounts for it, but we have been comparatively active. This morning I decided not to go to the Y because my back was hurting. I took a walk instead. That meant that I was home more today. In addition, Kate was up earlier than she has been the past couple of weeks. Perhaps that is because she is recovering from her cold. We sat together in the family room after my walk. She worked on her computer editing photos while I watched the news related to yesterday’s Super Tuesday election results. About 8:30, Kate said she wanted to go to Panera Bread. We were there shortly after 9:00. She was ready to leave shortly after 10:30. We ran a couple of errands. Then it was time to eat lunch. We left the restaurant at 12:05 and headed home for a while before going to a movie at 2:30. We got out of the movie just before 5:00. We got caught in the traffic and listened to some soft classical music on my phone. We got to Kate’s favorite Mexican restaurant, Chalupes, before 6:00. After we returned home, she walked into the kitchen and said, “It’s been a nice day.” I agreed and gave her a big hug. Now we are watching an old “Murder She Wrote” with Angela Lansbury. Kate is working jigsaw puzzles on her iPad, but she is catching a little of the program and enjoying it. This has been our best day in quite a while.
As we were coming home from lunch today, something funny happened. She looked at me and asked, “”Have you thrown anything of mine away today?” I said, “”Have I ever thrown away something of yours?” She gave me a dirty look but said nothing. I said, “I don’t know what you are talking about.” She gave me another look. I asked what I had thrown away. She said firmly, “Just shush!” I did. This is another example of her imagining things.