Wanting to Help

Among the first signs I noticed related to Kate’s Alzheimer’s was her lack of attention to some of her major household responsibilities. The most obvious one was that she often didn’t have dinner ready. It also included less obvious things like washing clothes but leaving them in the washing machine for a day or two before putting them into the dryer. Over the years, I have jumped in to take care of these things without our ever talking about it. It was as though she didn’t notice that I was taking care of meals, the clothes, and other household chores.

Thus it has come as a surprise to me that on several occasions recently she has asked if she could help me with something. Two of those occurred yesterday. She saw that I was taking clothes from the washer and putting them in the dryer. She asked if she could help. I felt little need for the help. This is a pretty easy task, but I was so pleased with her offer that I said yes. Later, I brought the dry clothes into the family room where I usually listen to music while folding them. I had already separated her things from mine when she walked into the room. Once again, she asked if she could help me. I quickly said yes. She picked up all of her things and walked back to her room. I later discovered that she hadn’t folded or picked up her clothes, but I was happy with her offer to help. That and her enjoyment of Darkest Hour that we saw yesterday afternoon made yesterday another good day.

Darkest Hour Scores a Victory with Us

Over the past year, Kate has enjoyed very few of the movies we have seen. That was quite a disappointment to me because we have always liked them. In addition, they have offered us another entertainment option besides the various live performances we attend. During the past two to three months, I have been very selective in my movie choices. That has meant we have seen few in that time. I had heard good things about the movie, Darkest Hour. Our friends, the Robinsons had seen it two days ago and highly recommended it. I mentioned it to Kate and told her it was about Churchill during World War II. She immediately reacted positively about seeing it. Yesterday I mentioned it again and asked if she was sure she would like to see it. She confirmed her interest. In itself that isn’t surprising. She has always liked films on historical topics like this one.

This afternoon we saw it, and I am very happy to report that she loved it. I was not only happy that she liked the film but that it signaled that she is still able to appreciate a movie of this nature. That gives me hope that we may find others that will appeal to her. This was the highlight of my day.

Reflections on Having a Sitter

It is hard for me to believe, but it has been four months since  introducing a sitter into our lives. I thought about it a long time before making the decision. Then I agonized over the best way to present this to Kate. As it turned out, my worries were unwarranted. Kate accepted the sitter from the first day. She has always been very welcoming and has made comments about how sharp they are, something she says about most people she meets. It has been a relief to see how she responds each time the sitter arrives. Today, for example, I was in the kitchen when the sitter drove into the garage. We chatted briefly. Then I took her back to our bedroom where Kate was working on her iPad. As we entered, I said, “Mary is here, and I am off to the Y. You can do whatever you like. If you wanted you could go to Panera.” At that, Kate’s eyes brightened. She had a big smile on her face as she looked at Mary and said, “We could go to Panera.” So once again, I left without any worries about how she would get along.

There is another aspect to having a sitter that I hadn’t fully anticipated. (I should make it clear that we have two different sitters. One comes every Monday. The other comes Wednesdays and Fridays.)  It still bothers me to leave her. As I suggested in a post two or three weeks ago, I was motivated to engage a sitter to enable me to continue going to the Y, Rotary, attend any meetings that I might have, and take care of any routine errands. I find that sometimes four hours seems very short. That is especially true when I go to the Y and Rotary on Monday. That leaves me only about thirty to forty-five minutes for other things. On Wednesdays, I meet my friend, Mark, for coffee and conversation. He is helping me transfer this journal to a blog. If we meet for an hour, I usually have forty-five minutes before I have to be home. On Friday, however, I don’t have any other standing obligations except the Y. That leaves me with almost two hours. I put that time to good use. I make new entries like this one for my journal and also review older entries to upload to my blog. (I’ll say more about that in a separate post.) While I make good use of the time, I feel the slightest tinge of guilt that I have left Kate in the hands of a sitter when I could be doing this with her at home, Panera, or Barnes & Noble.

At first, I thought I would get over this feeling rather quickly. Now that four months have passed, it hasn’t gone away. In time, I know that it will. In the meantime, I am following the guidance of my less emotional side and taking advantage of some private time that I would not ordinarily have.

I know that many people caring for a loved one with dementia would love to get a break. I would as well if it were not for the fact that Kate has been relatively easy to care for. In that respect, she is very much like my mother who had an undiagnosed form of dementia. As her illness progressed, she never became agitated or aggressive or displayed any of the kinds of behaviors that try the patience of many caregivers. The same was true for Kate’s mother who had vascular dementia. I am not ready to say that Kate will never express any of these problems, but she hasn’t so far.

As Kate declines, I am prepared to increase the amount of time the sitter is here. It is comforting to know that our long term care insurance provides up to 13 hours a day should we need it. That is well below the 12 hours a week that a sitter is with her now. I don’t anticipate increasing that anytime soon. I realize, however, that circumstances can change quickly. When the need arises, I will certainly take advantage of it.

Good Moods Make for Good Days

In my previous post I failed to note that Kate was in an especially good mood yesterday. I am sure that played a significant role in my own sense that we had had such a nice day. It is not that she is usually irritable. She does continue to show more irritability than before her Alzheimer’s, but those moments don’t last long, and, fortunately, at those times she is not difficult to get along with. That said, sometimes she is especially happy and cooperative. That is the way she was yesterday.

She also continues to be reflecting or thinking a lot. Over the course of her illness she has occasionally said something that sounds like we had just been talking about something and expects me to know what she is talking about. There were a couple of those experiences yesterday. She said, “I’m going to be very careful.” Instead of acting puzzled and asking what she was talking about, I said, “That’s a good idea.” She said, “I’m going to stick close to you whenever we are in public.” I told her I would watch out for her. She said, “I know you will. I feel safe when I am with you.”

When she says things like this, as she has done in recent weeks, I tend to impute more to her actions than may be justified. In this case (as in others recently), I believe that she is grappling with a sense that she is less and less in touch with her environment and the people around her. It may be her way of expressing her own insecurity. Overall, she seems not to associate her challenges with her diagnosis, but she still knows she is not normal.

A Very Nice Day

This has been a very quiet week for us. Since it started with New Year’s Day and was accompanied by colder weather, we haven’t had as many scheduled activities. I’ve actually been a little concerned about the fact that it has been too cold for Kate to work in the yard. That represents a very large portion of her personal time during the day. I’ve wonder how well I might keep her entertained. As of this moment, that has worked out well, and yesterday was especially nice.

Fortunately, Kate has slept later each day this week. The result is that we haven’t been getting to Panera as early as most morning’s lately. It was actually 11:00 two days ago. Yesterday we got there about 10:10. She was ready to leave less than an hour later. That meant it was a little early for lunch; so we returned home. She asked if she could work in the yard. I told her she could but that she wouldn’t have much time as we would go to lunch in a little while. Although it was about 30 degrees at the time, I figured she wouldn’t be out long enough to do any harm.

It turned out that  she came inside to brush her teeth and ended up working on her iPad in the family room. I went in and joined her. As usual, we didn’t talk during that time. It was just nice to be together. Before noon, we left for lunch. We went to a deli that we like but don’t frequent too often because of the crowds. It made for a nice change from our normal routine. We came back to the house for a short time. Then at 2:00, Kate had her monthly massage. While she was there, I went to Whole Foods and worked on my computer.

At 3:00, I picked her up. We had our iPads with us, so I decided to drop by Panera for a while. We were there until 5:00. At that time I suggested we go home and get ready for our opera night at Casa Bella. When we got home, I told Kate I would get her clothes ready for her. She happily accepted that. The only hitch we had was the usual one. I left her while I went to get dressed. She had forgotten we were going out and was still wearing the clothes I had shown her. When I told her we were going out, she reacted like it was the first time she had heard. Again, she simply stopped what she was doing and followed me back to her room where she got dressed.

Last night we had two new opera students from UT. They were outstanding. We enjoyed our meal and the people with whom we sat. It was a cold night, but it was filled with warmth for us. It had been a very good day.

Asking Questions

Over the course of Kate’s illness, she has relied on me for many things. The number of different things has gradually increased. At first, it was principally as a source of transportation. Over time she has come to depend on me to organize our lives, our daily routines, take care of routine household chores, and most aspects of her life. She has always looked to me to answer questions for which she didn’t know or couldn’t remember the answers. Recently, however, she is asking me more questions. It’s not just that she is asking more. It’s the kind of questions she is asking. They are questions that clearly signal a new stage in her journey. They are asked innocently as though they are the kinds of questions that almost anyone might ask. Another way of expressing this is to say that she displays no effort to disguise the fact that she can’t remember many things.

The questions I have in mind are mostly those about other people. She has much greater difficulty remembering most people’s names, now. That includes close family members. I have found this particularly noticeable during the past three months when we have made two different trips to Texas. She has continually asked me to tell her the names of people like her close childhood friends. That is not too surprising since she rarely sees these people, but it includes longtime friends we keep up with in Nashville. Of greater concern is the increasing moments when she can’t recall the names of our children, Jesse and Kevin. Fortunately, when she is with them, it is obvious that she remembers them and is able to act naturally with them. It is particularly hard (almost impossible) for her to remember the names of their spouses and the grandchildren. The greatest surprise of all occurred yesterday when she asked, “What is my name?” Before I could tell her, she said, “Kate.” Her questions are not limited to names. She frequently asks how long we have been married and how old she is. She never remembers.

I can never know exactly what is going on inside her brain, but I do often speculate about what she is thinking or what motivates her to do things. With respect to the questions, it seems to me that she realizes she can’t recall basic things that she should know and is trying her best to teach herself by asking me over and over. Unlike the way she responded during the earlier stages of her illness, she does not express much frustration over not remembering things. She does say things like “I’ve asked you that before. I don’t know why I can’t remember.” The tone of her voice suggests a minor sense of frustration, but it is nothing like she experienced several years ago.

When she says things like this, I always respond the same way with something like “It’s funny how the brain works or doesn’t work. Sometimes I will forget a name, and then, a little later, it pops into my head.” I have chosen not to tell her that this is a result of her Alzheimer’s. I see no benefit in that.

Kate’s Obviously Having Some Imaginary Conversations

In my earlier post I noted that it appeared that Kate thought she and I had had a prior conversation about the Wisconsin professor for whom she worked while I was a grad student. That was not a unique occurrence; she had another such experience as we drove to dinner tonight. She said, “I’ve always felt comfortable being with you.” It was her tone of voice, not the words themselves, that made believe she was responding to something I had said although I hadn’t said a word. I looked at her but didn’t say anything. I was just puzzled by her comment. Then she said, “I always know that when I am with you that you won’t let anything happen to me.” I agreed.

Both her afternoon and evening comments made me rethink some earlier comments she had made at home. It is as though she is doing a lot of reflecting and/or reminiscing. I often wonder if and what she is thinking during her long moments of silence. Today’s experiences may provide a brief glimpse. I wish I could know and understand more.

Passing Time on a Cold New Year’s Day

I have often commented on our normal daily routine and how it seems to have worked for us. The flip side of that is the potential problem that can come up when our routine is broken without having alternate activities to take up the slack. Today is one of those days. It is simply too cold. This morning it was about 29. This afternoon it is in the low-30s. That means that Kate has not been outside working in the yard. It is hard to overstate how important working outside is for her. She can do that much longer than working on her iPad. We both refer to it as her therapy. I clearly believe it is the only thing she does that doesn’t demand that she play by any rules. There are no time constraints. No one rushes her. No one tells her that she is doing things the wrong way. Possibly the most important thing is that she believes she is making a positive difference in the yard.

When she can’t work in the yard, that puts a little more pressure on me to entertain her. I addressed that this morning by building a fire in the fireplace in our family room. She and I both have always enjoyed a fire. She used her iPad to work puzzles, and I worked on my computer. I put on some soft music that she would enjoy. It was a very pleasant time. It provided a nice break between our visit to Panera and our lunch.

I wondered how things would go after lunch. Would she attempt to work outside despite the cold? Would she want to go back to Panera or to Barnes & Noble? Would she want to return home and enjoy another fire? My preference was to go home. Fortunately, that is exactly what she chose. After I got the fire going and music turned on, I made a quick trip to the grocery store. I am happy to say that she was still sitting in front of the firepace when I returned. Not only that, but she didn’t get tired of that until 3:00. That is an unusually long stretch for her to be entertained with her iPad.

At 3:00, she looked at me and asked, “What can I do?” I asked if she would like to get out of the house and go to Panera or to Barnes & Noble. She wanted to go to Panera. Before leaving the house, she said, “I could go to the restroom there (Panera).” I told her she could go at the house if she wanted. She said she would do that but didn’t. When we got to Panera, she went directly to the restroom.

When she returned, it was clear that she had been thinking about our past. She talked as though she and I had been talking about Madison where I had been a graduate student at the University of Wisconsin. Her first comment was to ask “the name of that man.” I had no idea who she was talking about. Then she said something about Madison, and I asked if she were talking about the English professor for whom she worked the first two years we were there. That turned out to be right. She talked about how brilliant he was and how approachable he was. She really enjoyed getting to know him. She said she thought Madison had changed her life. I told her I felt the same way. I got up to go to the restroom. When I returned, she said, “I want you to know that I never loved anybody but you.” Then she added something that surprised me. She said, “I admired Mr. Biederman, but I never loved him.” I was surprised because it had never crossed my mind that she might have loved him and wondered what made her think of that now – fifty years later.

We have been here (Panera) almost an hour and a half. She seems quite content, but I have to believe she is going to want a change pretty soon. I am feeling pretty good that we have almost filled a full day without any difficulty keeping her occupied. I wonder what will happen tomorrow. It is supposed to remain cold for the balance of the week.

Both of Us Are Adapting

As the year ends, we are experiencing some things that are just like they were a year ago. That is, most of Kate’s symptoms are very similar to a year ago. There are, however, two differences. The first is not surprising, but it bothers me. Her memory is clearly worse. Second, she and I are both adapting pretty well to the changes that we have experienced not only this year but the preceding seven years since her diagnosis. Let me give a quick example that occurred this afternoon.

Apart from our routine daily events, Panera, lunch, and dinner, the only thing on our agenda was a birthday drop-in for a woman with whom we sit at Casa Bella for their musical events. She was 93 yesterday. The drop-in was between 2:00 and 5:00. We returned home from lunch shortly before 2:00. My intention was to be at the party around 3:00 but with no firm time. As we got out of the car, Kate asked, “What can I do?” I told her we would be leaving for the party in about forty minutes and that she could work on her iPad for a while or go outside for a short time before getting dressed for the party. She had forgotten about the party. I had told her multiple times including just before we got home. She chose to go outside. It is like a magnet for her.

I let her stay outside for about thirty minutes. Then I called her in to get dressed. She came in right away, something that is new over the past year or so. I walked to her room with her and showed her some clothes that I had picked out for the party. She liked what I had chosen and started to get ready as I left the room. In a few minutes, I went back to our bedroom where I found her dressed in the same clothes she had been wearing. I mentioned the party and told her she hadn’t put on the clothes I picked out. She had forgotten the party again. She didn’t remember any clothes I had picked out. She followed me back to her room where she had thrown her top on a chair and the pants on the floor. She had put her sweater back in the closet.

This time she put on the clothes I had picked out. More significantly, from the standpoint of a change in her is that she very happily accepted my suggested clothes and put them on. In the distant past, she would have asserted her independence. As the year closes, I find that she commonly accepts my suggested changes in her clothes when I think it appropriate, now. This surely makes things easier for me. As I have noted before, though, this comes at a cost because I know that her increasing dependence is associated with the progression of her Alzheimer’s. I don’t like to see that.

I, too, have adapted over the course of Kate’s illness. I now do a better job of not fretting about her wearing good clothes to work in the yard, or to wear clothes that are somewhat soiled, or to avoid any rigid time constraints. All of these things have helped us handle our situation with a minimum of frustration. I emphasize “minimum.” It would be next to impossible to avoid all frustration. I am glad to say that my sense of frustration is a very minor aspect of my feelings. I find that sadness for Kate and for our relationship is a much bigger emotional issue.

The year has been marked by highs and lows. I haven’t gone back to read my posts from the past few months, but I believe I was in a more upbeat mood several months ago. I sense that as the year closes, I am less upbeat as I consider that the latter stages of her illness appear closer and closer.