I am glad to report that the afternoon and evening went quite well yesterday. Kate got up from her late-morning rest and we had a very nice lunch and made it back for her 1:30 hair appointment without having to rush. Leisurely going about our daily activities works best for both of us.
We were back home before a big rain storm hit the area. It was so bad that I called the restaurant to make sure the program was still on for the night. It was. I told the woman on the phone that we would come if the rain slackened; otherwise, we would stay at home. As it turned out, the rain was lighter and we went despite the nasty weather conditions. It turned out to be fine. The crowd was a little lighter, but the program was excellent. Kate sat beside the 95-year-old woman who used to run the restaurant before her daughter took over years ago. Another couple we had not met before sat across from us. Kate didn’t participate much, but I don’t think she felt left out. We both enjoyed the evening.
During the afternoon and after we returned home, she was talkative but seemed to have more trouble expressing herself than usual. She talked for an extended period before dinner. I don’t even remember what she talked about. That may have been because I couldn’t understand her. She used a lot of wrong words and often acknowledged it. In addition, her comments were filled gestures, “You knows,” and vague words like “things,” or simply “da, da, das.”
The other talkative period lasted approximately thirty minutes as I was trying to get ready for a shower. Everything had been going smoothly. She had been in a cheerful mood the whole day. That continued as I started helping her get ready for bed. We got to the part where it was time for her to remove her pants, and she refused. I explained that she hadn’t put on her nighttime underwear. That had no impact. I tried to gently coax her and finally said something that changed the tone of our interaction. I don’t remember exactly what I said, but I apologized and suggested we step back and think about our relationship. I conveyed my love for her and mentioned that we have always respected each other and that my only desire was to help her.
She immediately changed her tone of voice and began a lengthy conversation (soliloquy). She started talking about our relationship and how much she appreciated what I do for her. Then she began to talk about how we could help a boy in need of something. I only picked up that he had a sister but little else. It was impossible for me to understand. All I can say is that she talked for thirty minutes and was strong in her belief that she and I together would be able to help him.
I have often said that I am able to lead Kate to a recovery whenever she has challenging moments. Most of those involve her confusion in the morning. More recently, she seems more frightened by sudden noises like those we hear at restaurants. She is also more irritable. I attribute that to her not understanding or anticipating my intentions when I help her. Yesterday morning all of these came together.
It began when her overnight underwear (pull-ups) failed. I was in the kitchen and heard her say something. She was upset. When I asked if I could help she said, “Get me out of here.” I got her to the bathroom. As I helped her get cleaned up and brush teeth, she alternated between wanting me to tell her what to do and resisting my help. As she usually does, she got tears in her eyes and apologized to me several times. While we were standing at the sink, I put my hand on her arm. She shrieked as though I were going to harm her. I asked why she was so upset. She cried and said, “I don’t know. I don’t know.” I believe that was a very honest answer. She really doesn’t know why, but she still feels she shouldn’t respond to me this way. I tried especially hard to respond in a gentle, caring way to comfort her.
Several times she said, “Why did you bring me here? I just want to go home.” I told her I would take her home. Then I got her dressed and took her to Panera for a muffin. Once we were in the car, she seemed fine. She even spent more time on her iPad than usual. In fact, we would have stayed longer except that it was almost time for the sitter who comes at noon on Monday. She didn’t mention going home again. The sitter came a few minutes after we got home, and Kate was just as natural with her as she is with me. I felt good as I left.
Looking back, I see the only difference yesterday morning from other challenging mornings was how upset Kate was. I don’t believe it lasted any longer than other mornings when she is confused. It does reinforce my belief that remaining calm with her and easing her into her daily routine brings about her recovery.
I hope this will continue, but I know I can’t be sure. I am reading a memoir written by a doctor who cared for his wife who had Alzheimer’s. I have identified with him in a variety of ways, especially his desire to care for his wife in such a loving way. Last night I read a section in which he relates the severe anger that his wife experienced in the late stage of the disease. Is that ahead for Kate? As they say, “only time will tell.’
Over the past few days, Kate has snapped at me several times. As in the past, she quickly apologized with tears in her eyes and said, “I shouldn’t have said that.” I’ve been struck by her awareness that she has spoken to me in a way she hasn’t done before Alzheimer’s entered the picture. Two nights ago, I was even more surprised.
We had just finished a very pleasant dinner at Bonefish Grill. I started the car, and she said, “May I tell you something?” Her tone of voice made me think she was going to say something nice about my caring for her as she often does. I was surprised when she said, “I know I’ve been hard to deal with lately, and I want you to know I’m sorry.” I was both touched and stunned. Here she is trying to adapt to the changes taking place in her brain, and she feels bad about the way she has treated me. Apart from that, I was amazed that she said this “out of the blue.” I think it had been more than twenty-four hours since she had last snapped at me. That tells me this is something that really disturbed her. That matches her other concerns related to not knowing “anything.” To me it is a remarkable example of her kind heart and self-awareness. It also increases my desire to see that she gets the best care I can give her.
Last night was opera night at Casa Bella. We sat at our usual table with the couple who used to operate the restaurant before their daughter and her husband took over. A new couple joined us. We were seated with the three women on one side of table each one across from her husband. Kate and I were in the middle. The conversation was going on in several directions. At one point, Kate got my attention and asked me to tell her where we live. The woman to her right had asked her, and Kate didn’t know the answer. I said, “Knoxville,” but she wanted to know the part of Knoxville. I told her. The conversation continued. Then Kate wanted to know where she is from, that is, her original home. At that time, the person to her right was talking diagonally across the table to the person on my right. I looked at Kate and asked her to wait just a minute in order not to interrupt them. Kate was frustrated. When she wants something, she wants it right then. In a loud voice she said, “Richard, where am I from?” It wasn’t loud enough to be heard around the room where the rest of the crowd was involved in their own conversations; however, it was obvious to each of us seated at our table. I told her Fort Worth. Since the man to my left had a friend in Fort Worth, that opened another conversation. We went on without showing any sign of Kate’s outburst. It would have been a good time for one of the cards I am having printed just for this purpose. They will arrive sometime next week. That’s good. We could be reaching the time where they might come in handy.
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.
The past few days have been busy ones but full of good experiences. On Friday we went to Nashville to visit the Greeleys. We both enjoy them. Scott had just arrived home from a class in which he was showing his photos from their trip to Africa last September. It was a dreary, rainy day. We had lunch that Jan had prepared; so we didn’t worry about going out until dinner. We didn’t get home until after 9:30, but the trip had been well worth it. Kate still gets along well in situations like this. She does occasionally make slips when she is talking, but I believe I am the only one who would know it. For example, she told a story of her trip to Mexico City when she was in high school. She mixed in a story from our trip to Colombia in 1976. She said she had asked the wife and mother of the family she was staying with where the maid lived and was taken to a small room off the kitchen. This is something that actually happened when we arrived at our place in Cali, Colombia.
Saturday morning we went to the regional auditions for The Metropolitan Opera. This was our first time to do this, and I wasn’t sure that Kate would want to stay for the whole thing. She enjoyed it so much that we stayed right through the announcement of the winners around 4:30. It had started at 10:00. It was a wonderful day of entertainment. These were extremely accomplished singers from 15 states and 1 from Canada. We also saw a number of people (8-10) we know. It was fun to talk with them during breaks.
Last night we attended a concert by a European opera company that has been coming to Knoxville for the past 5 years or so. They had several singers who performed highlights from operas by Rossini, Puccini, and Verdi. It was outstanding. Once again, Kate loved it. Our seats were on the second row, and there was no one sitting on the front row. We both like to be close; so this added to the pleasure of the evening.
The only down side of the day was the short time after we had come home from the auditions and before we left for dinner and the concert. We didn’t have much time, and Kate decided to change clothes. At one point when I felt she needed to know that it was time to leave, I started back to her room and started to gently ask how she was coming along. She shouted at me, “Leave me alone. Don’t say anything.” When she came out, he was wearing something old that was fine, but she could have been wearing one of her new clothes we had bought. By the way, that morning before the auditions, she had told me, “I’ll be ready when I get ready. Don’t say anything.” We had a similarly tense moment this morning getting ready for church. The moments when we are trying to get ready continue to be the most challenging one’s for both of us.
As we were going eat lunch today, she pointed to a couple walking a dog along the street. She said, “Now look at that couple.” I then said, “Have you seen them at Panera?” She gave me a dirty stare. The reason I asked is that she commonly asks me to look at someone in a restaurant like Panera Bread. Then she tells me she wants me to remember them because she has seen them before. I don’t know whether or not she has seen them before, but this kind of behavior on her part is new within the last year or so. It happens pretty frequently.
Change is gradual and impossible to detect from day to day. On the whole, however, I would say that Kate has exhibited a number of changes in behavior. I take all of them as signs of her continued decline and drift away from me. I have noted her desire for independence a number of times. This is pretty strong and I believe the result of my trying to help her so much. She has become resentful of that and tells me that I don’t think she can do anything on her own. She is not far off base on this judgment. She makes so many mistakes that I find myself trying to head them off. She even resists taking my hand as we cross streets or go down stairs. I have offered numerous times to help her clean up the clothes in the three bedrooms. She won’t hear of it. She says she is working on it. In fact, recently she has been doing so. This past week I had planned for us to go to Panera during the morning while our housekeeper cleaned. She wanted to do so, but she started cleaning her office; so I let her do that. She was getting some satisfaction from doing it, and it really needs to be done. She works very slowly; so she didn’t get far. Then she messes up faster than she is able to clean up.
She is washing clothes more regularly, something else that I believe arises from her desire to be independent. It also comes, I think, from her not be able to do so many things that she gravitates to those things she is able to do.
I have commented on her developing a sense of humor. She hits me pretty hard for being so compulsive. Sometimes the way she says things doesn’t sound humorous at all. I am wondering if she isn’t moving toward being irritable. I hope not. It is much easier to take when I think she is teasing me. This is something I may say something about, but I don’t want to make her angry or try to get her in a conversation she is not equipped to handle. This is very delicate.
As I begin to look at all the things going on, I am more convinced that 2015 is not going to be a good year for us. I have talked to more people about her AD in the past few months, and I have been writing more in this journal during January than I have done in quite a while. That may signal something about me as well as about Kate. I am going through more frustration, sadness, and possibly fear of the future. I am in the midst of planning our trip to Switzerland in May and am wondering about modifying my plans to make things even more leisurely than I had originally planned. Rushing her is the worst thing I can do.
Let me also make a note about her expressions of appreciation. At the same time her irritability seems to be increasing, she is also expressing more appreciation. She frequently says, “You take such good care of me.” I believe she is truly sensing her decline and recognizes how much she needs me even as she is fighting for her independence. At any rate, I much prefer the appreciation than the irritability.
Among the subtle changes that have and are taking place with Kate are the various behaviors that I call “childlike.” These are so subtle that I doubt that anyone else would even notice if they occurred in their presence. One of those that I can’t describe is a look of detachment like the innocence of a child. These often occur when she gets some kind of soil on her clothing or spills something on a piece of furniture or the floor or loses an earring. It is as though it simply doesn’t matter or that she doesn’t realize how significant it can be. One of those involves some jade jewelry that she bought in New Zealand. I haven’t seen them since shortly after our return home. She wore one of the necklaces several times and then couldn’t find it. By now she has forgotten she has them. I suspect they are in her room somewhere but neither of us would know where.
Another example would be her “little game” of counting the number of people who are walking along the sidewalk or crossing the street. As we drive, I will hear her say, “One.” Then she will say, “Three.” She often counts the cars at an adult video store. Over the weekend, she said she was going to start counting the times we pass McDonald’s when there are no cars at the drive through. The first time I ever noticed anything like this was when she started announcing the price of gas at the various gas stations we passed. I think this came after some mention about my being observant. She made a deliberate effort to be more observant herself.
I have mentioned before that she gets more irritated with me than she has ever been in our married life. When she is irritated, however, she is not really nasty. She seems more like a little child.
Another thing I notice is that she delights in joking with me, something that she has never done before.
The downside of all this is that it occurs because of deterioration in her brain. The part of her brain that controls her actions is weakening, and she is allowing herself to express herself in ways that she didn’t use to do. I have mentioned before that she is less attentive to the way she dresses and the way her hair looks. She usually does not brush her hair before we go out. I do this for her, and she is appreciative not annoyed that I am taking over this aspect of her life. On the other hand, she is annoyed by my helping in other ways. She asked me over the weekend to let her respond to people before I do. She said this as a reaction to my answering emails or making phone calls to people who had contacted both of us. I have done this because she doesn’t feel the need to respond right away, and then she forgets about doing it at all.
Yesterday we celebrated our anniversary by making a daytrip to Asheville. It was a nice day, the first time we had been back to Asheville in 4-5 years. Next year I plan to go for 3-4 days. We always love it.
When we got up yesterday morning, I noticed that Kate was beginning to embark on her pictures on her computer as I was going out for a short walk. I said something about our needing to leave at 9:15 or so. She looked at me with a blank expression. She had totally forgotten we were going to Asheville and that it was our anniversary. This is not a surprise as she normally forgets things like this. I just thought there might be a possibility that she would remember. Once I told her it was our anniversary, she remembered we were going to Asheville. She then said, “Happy Anniversary.” She got up immediately to get ready. This is a common reaction when she learns that she has forgotten something. My interpretation is that we both understand why she has forgotten; so she doesn’t apologize or act apologetic. She simply moves ahead with whatever she should do to correct the problem.
Everything went well on the trip. We even met a couple from Newnan, Georgia. He is a cardiologist who taught in a medical school in Wisconsin after leaving private practice. Then he spent 10-14 years in medical missions. After that went to seminary and is now a parish associate at a Presbyterian church in Newnan. Kate got along quite well with the couple. I cannot imagine that they suspected her Alzheimer’s at all; so we continue enjoy ourselves and very little happens that would make someone suspicious.
She continues to be a bit more emotional than before. Most of the time this is a positive. She likes, should I say loves, everybody and everything. On the other hand, she also is a little snappy with me at times. This morning, for example, she told me not to “ever do that again” when I was combing the front of her hair. It apparently was already the way she had wanted it. This kind of thing passes quickly, but it resurfaces from time to time. I suspect I may see more of this in the future.