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Odds and Ends

This is the Tuesday before Thanksgiving. We leave tomorrow for Memphis where we will spend the holiday with Jesse and her family. I am less prepared for the trip than I would like. I haven’t packed anything. Neither have I spoken with Jesse for a few weeks, so we haven’t coordinated on anything. I suspect neither of us is too worried there. We both know that she will be bearing the lion’s share of the load. The past few years she has been the one to cook the turkey in the Big Green Egg that she gave to Greg a couple of years ago. Since he travels a lot, she has been the one to use it.

This morning I took care of things like paying some bills and communicating with someone at United Way regarding a committee project on which I am working. We made our usual trip to Panera. Kate was up early again. We were there before 8:30 and back home by 9:30. We had haircuts at 11:00. We went to lunch from there. We had a 1:30 appointment to sign some papers at the bank and got back home about 2:15. Kate worked outside while I went to the grocery to get a few things to take to Jesse. Shortly after getting back, Kate came in from outside and wanted to go to Panera again. We will leave here in a few minutes to get ready for the evening. We are going to see a production of Sound of Music at 7:30 and will have dinner prior to that.

The day has gone well thus far. Kate’s good mood continues. Tomorrow we will stop in Nashville for lunch with the Robinsons, old friends from TCU. He is a retired philosophy professor at Vanderbilt. We won’t have time for a long visit, but it will be nice to see them. I sent a text to Jesse telling her to expect us between 5:00 and 6:00 tomorrow afternoon.

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Little Things That Add Up

During the past few weeks, I have looked back at the entries I made during the first year after Kate’s diagnosis. I have been struck by the similarity of symptoms then and now. If you are someone who has read the early posts as well as recent ones, you may be thinking Kate hasn’t changed very much. That is definitely not the case. She is unquestionably worse now than almost seven years ago. The difference now is the number and type of symptoms that occur. The progression of her illness has been very gradual. Were that not the case, she would be in a very different place today.

Last night and this afternoon, I observed two instances of behavior patterns that are very similar to what she has been doing but with subtle differences. They may be subtle, but they keep accumulating and make a difference for the long run.

About 8:15 last night, I told Kate that I was going to take a shower. She wanted to know what she should do, and I told her it would be a good time for her to put on her night gown and prepare for bed. She got up from her chair and went to her room to get her gown. When she returned, she was wearing a robe and was carrying a pair of slacks. Coming back to our bedroom in a robe rather than a night gown has become a rather frequent occurrence. I asked if she felt better in a robe than a gown. She looked puzzled. Then I clarified why I was asking. I told her that I had noticed that she frequently came back in a robe than a gown. Again, she looked puzzled. I asked if she would like me to get her a gown. She said she would appreciate that. I gave her a hug and told her I would be glad to do that. She thanked me. Like many things, I will never know why she doesn’t get a gown. She has any number that are hanging in her closet. I suspect that she may forget why she has gone into the closet, her eyes catch a robe, and she pulls it off the rack. She almost always wants a gown when I ask.

As we drove up to the house following lunch, Kate asked, “What can I do now?” I told her she could work outside or she could stay inside and work on her iPad. She indicated that she wanted to work outside, but first, she wanted to brush her teeth. I told her that would be fine. It is really a great day for outside. It is a bright sunny day and in the low-60s.

I came inside and hung my jacket in the closet. I was walking toward the kitchen when she came out. She asked, “What do I do now?” I reminded her that she had said she wanted to work outside. She said, “I was just making sure.” This may not be the first time this has happened, but it is at least the first time it has struck me that she must have forgotten what she had said she was going to do and wanted me to tell her. In the past, she would have forgotten and just done whatever she wanted at that moment.

Something else happened this morning that sensitizes me to Kate’s prospects for more serious declines. I got a text from a college friend, Nancy Hardwick, who lives in Denton, Texas. Kate and I had dinner with her and her husband, Charlie, in October when we went to our 65th class reunion at TCU. She indicated that Charlie, who also has dementia, had declined rapidly in the past few weeks, had not eaten in two weeks, and might go on hospice as early as tomorrow. I had known from Nancy and could tell by observation that Charlie was ahead of Kate in the progression of his dementia, but I never imagined that a few weeks later, he would be going into hospice care.

This news reminded me of a similar situation with a friend in Nashville. A year ago in August, I saw her at a luncheon here in Knoxville. I was aware of her Alzheimer’s and that she might be a little ahead of Kate. A month or two later, I learned that she had made a sudden decline and was on hospice. She died in February.

As I noted above, Kate has not experienced a rapid change of this nature. Knowing about these two friends, however, makes me more aware of that possibility.

In addition to these things, I have wondered about Kate’s behavior patterns over the past six weeks. She has been in an unusually good mood. She has been very compliant. I am wondering about two different things. First, could it be that she is moving deeper into the “fog” that accompanies this illness and is not experiencing the frustrations that have nagged her in the past. The second is something of a statistical nature. I have often observed certain kinds of events occurring with greater frequency are often followed by a corresponding lessening. The most vivid illustration comes from my business experience. If we have a month in which business increases dramatically, that is often followed by a slower month.

I don’t spend much time worrying about these things, but I do wonder. Among all the possibilities that I have considered, a sudden decline anytime soon is not among them.

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Nearing the End of Movies

For some reason I had not made plans for anything special today. While we were having our Saturday lunch at Bluefish Grill, I thought about the fact that we would have a full afternoon without anything specific. I decided to see what movies were playing and noticed that a new movie that supposed to be a good family movie, Wonder, was playing across from the restaurant. They had a showing at 1:10 which fit our schedule beautifully.

For months, I have been attempting with minimal success to find movies that Kate can enjoy. It is only in the past year or so that has become a challenge. We had had great success with Jane last week. I thought surely this would be one she would enjoy. It is a very touching movie with a number of emotional moments. It focuses on a young boy who was born with a condition that has caused serious problems. After numerous surgeries, his face was scarred which makes it hard for him as he enters school after several years in which his mother had home-schooled him. The overriding premise to the movie is the value of kindness.

As always, I periodically looked over to see how she was reacting but couldn’t be sure until we left after the movie how she felt about it. I quickly found out that she was not enthusiastic. She indicated that she had been very sleepy, or she might have enjoyed it. I was very disappointed because I didn’t feel that she needed to be able to follow the plot that the children, especially the stars, would capture her attention. I have often heard that people with dementia can sense emotions longer than they are able to understand what is literally happening around them. I have had the impression that has been true for Kate because up until the past year, she was enjoying most of the movies we have seen. That didn’t work today. This was a movie filled with emotion, just the kind that should have touched and would have in the past.

Although I am disappointed and saddened by the phasing out of our movie-going, I don’t intend to stop trying. On the other hand, I must admit to more than a bit of pessimism that I will have much luck. When movies go, the next thing could be live theater and opera. Life is closing in around us.

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It’s Getting Hard to Remember Names of Family Members

Yesterday while we were having lunch at Applebee’s, I had mentioned that one week from now we would be returning from Memphis. She looked surprised and asked, “What’s in Memphis?” I told her we were spending Thanksgiving with our daughter, Jesse, and Greg and the twins. She then asked me the boys’ names. She said, “You’re going to have to help me tell which one is which.” At first, I said that Ron is the one who is usually playing a video game on the TV in the family room and that Randy is frequently working on his Rubik’s Cube. I knew before it came out of my mouth that this was not going to work. Then she asked me to describe them. I told her a better way would be to show her pictures. I got out my phone and found several pictures I had taken on last February. I said Ron is the one on your left and Randy is the one on your right. Then she pointed to Ron and asked his name again. I told her. Then she point to Randy and asked the same thing. I told her. Then she went back to Ron. I didn’t really expect that this would help her remember them when we are there next week or even after lunch. I wasn’t even very surprised when she couldn’t remember them immediately after my telling her. We went over the names several times, and she never got them right.

Then I showed her pictures of our Texas grandchildren with a similar outcome. At one point, I asked her their parents’ names. She couldn’t tell me. I told her as I did before our trip to Texas in October. She really does know all of them. She just can’t attach names to them. I haven’t tested her, but I suspect she would have trouble just naming our son and daughter and their spouses. It would really be difficult to get the grandchildren’s names.

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Looking For My Guidance

Kate’s asking what to do or when to do is not a new thing, but it almost always catches me by surprise. In this respect, I am almost like someone who is unfamiliar with her habits. This afternoon before I left her with Mary, the sitter, she presented me with one of those times. As usual, I had not mentioned that the sitter would be coming and I would be going to the Y. I’m not quite sure why I don’t. It may involve several factors. One is that I know she won’t remember even if I tell her. Another is a slight fear that she might not react in the positive way she has done thus far. The latter is not a serious concern since she has reacted so well on every previous occurrence. Maybe I will get over this soon.

When Mary arrived, Kate was in our bedroom working on her iPad. Mary went back to say hello and to let her know that she was here. Then she came back into the family room and took a seat. I went back to say goodbye to Kate. When I approached her, she motioned me to come over to her. When I did, she started to whisper something. I thought she might be about to ask her name. She surprised me when she asked what I wanted her to do. I told her she could continue working on her iPad or she could work outside or they could go to Panera. She acted surprised that she was free to do these things. I have had this impression a few times before. It is as if having a sitter restricts what she can do. I have tried to be very clear that I want her to do the things she wants to do while I am gone. The thought also strikes me that it may not be the sitter that is the cause of this sense of a restriction on her activities. I have mentioned that when we return from home during the day, whether it is from Panera in the morning or from lunch in the afternoon, she frequently asks if she can work outside, where she can work outside (the front, the back, or all around), and if she can use her clippers. I have never restricted her with respect to any of these things, but she always reacts with surprise when I say “yes” to each of her questions. Thus, it may be that she still sees me as setting boundaries for her even when the sitter is here. While I hate for her to feel that I control her in this way, I must admit that also makes compliance work well, something that is increasingly evident when I do want or need her to do something like coming inside to get ready, to wear clothes that are most appropriate for the occasion, etc.

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Acknowledging the Impact of Dependence

I envy those who seem to be able to recall the exact words of conversations. It is just about impossible for me. In this journal, I have tried to capture exact quote where I can. In many case, I have retained the spirit of the words that Kate and I have spoken, but they aren’t always the same exact words we have uttered. The notable exception is the mention of phrases that are common place like “Let’s not talk about it” or “Tell me tomorrow.” All of this is to say that we just had an exchange that I wish I could capture in the literal words in which they were spoken. Here’s what happened.

As we walked out of Panera to return home, the sun was shining brightly. Kate put her hand up to protect her eyes. I said, “This is a good day for sunglasses.” Then I remembered that she had lost the two pair of sunglasses I had bought her recently. As it turned out, I found one hanging on a shrub the other day. After returning it to her, one of the lenses fell out. I told Kate I would have to see about getting her new ones.

When we got in the car, she said, “If I had a car, I could get my own.” Then she mentioned other things she could do if she had a car. I told her I knew that she missed having a car. We exchanged a few comments about my willingness to take her places. Then she said, “How would you feel if you were the one without a car, and I had to take you everywhere.?” I told her I wouldn’t like and would feel dependent. As I continued to talk, she said, “I’m not listening.” It wasn’t mean-spirited, but I knew it was clear that she wanted me to stop.

What I think is significant is that Kate does not talk much at all about how she is feeling. Much of what I know about her feelings I pick up from observation. This particular conversation is an indication of her continued struggle to hold on to her independence. This goes far beyond having a car, but it seems like the car is an obvious symbol of her dependence. I should not be surprised at this. I do recognize that having the freedom that a car provides is very important for many of us who are aging.

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As Expected, Another Good Broadway Night

Yesterday I reported on our full but very good day. That was just before we were leaving for our monthly visit to Casa Bella for Broadway Night. We have enjoyed all of their musical evening dinners; so I was optimistic that we were in for a good evening. I was right. Once again, we sat with the Jensons. We have really enjoyed getting to know them. They are in their nineties and doing very well. She is the daughter of the woman who started the restaurant almost fifty years ago. When he married into the family, he became a partner in the restaurant. They worked together until they turned the restaurant over to their daughter and her husband. We were joined by another couple that usually sit at another table. It was also getting to know them a little better.

Apart from that we saw a neighbor whom I see frequently on my morning walk. I had mentioned some time ago that Casa Bella had the Thursday night musical events. This was her second time their with two of her friends. In addition, I saw a member of the Sunday school class I used to teach. These are the kind of connections that become everyday events in a city like Knoxville. I believe this has made our lives with AD just a little bit better than it might have been otherwise. The best part is that both Kate and I enjoy these social encounters. They aren’t long or involved and do not involve any great obligations that we would be unable to meet. They just become bright spots in our day.

Of course, the focus of the whole evening is on the musical program itself. We were familiar with all three of last night’s musicians. That also adds a measure of comfort for us. The female vocalist has a master’s in voice from UT. She is not only a fastastic singer but a great actress. She brought the house down when she sang her last number, “Habanera” from Carmen. She slinks seductively among the audience stopping by a number of the men in the audience. Everybody gets a kick out of this. Her finance is a gifted pianist from Spain where he has received wide recognition. The male singer is someone who is very active in local theater but earns his living in the computer industry. All told, it was a beautiful end to what had been a very nice day.

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One Reason I Say We Have Been Fortunate

As we drove up to our house from Panera, Kate asked if she could use her clippers. I said, “Absolutely.” She gave me the surprised look she always gives when I say this even though I have never said no.  Then she asked if I thought she would need a jacket. I told her not the one she had on but another one I would get for her. (The one she was wearing was a new one I had gotten for her last week. I didn’t want it to get messed up outside.) Then she asked me where she should start, in the front of the house or in the back. I usually say, “You can start wherever you like.” Then she will make a suggestion, and I say, “That would be fine.” I get a kick out of this question because she almost always asks it, but she never remembers what she has decided and simply starts wherever she feels like it when she goes out.

She came inside for a few minutes and then walked in the kitchen to go outside. I helped her with her coat. She asked where the clippers were. I told her they were on the top shelf of a shelving unit in the garage. She said, “I’m going to change my shoes” as if asking my permission. I told her that would be a good idea. (She has two pair of gardening shoes that, surprisingly, she has had for years without losing them.) As she was putting them on, she asked once again, “Where are my clippers?” She was standing in front of the shelving unit with a variety of gardening tools. I told her “on the top shelf.” She looked and finally saw them. Then she said, “You mean right there in front of me?” I smiled and said, “I didn’t say that.” She gave me a big grin and said, “But you were thinking it.”

During any given day, we have a number of such interactions. I work very hard to reinforce this kind of behavior, but I also believe that, by chance, our personalities just work together well to minimize conflict. I should add that this is more indicative of our relationship now than at earlier stages of her AD. I also believe this is something than could change as the disease progresses. There is much that we can’t control. Once again, I say we have been fortunate. I know that many others have a much more difficult time. I feel for them as I give thanks for our own experience.

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Sometimes I’m Not So Organized

As one who has a few OCD tendencies, I like to think my life is reasonably well-organized. Kate’s Alzheimer’s has tested that, and I regularly come up short. Take this morning, for example. Kate was up when I returned from my walk; so instead of going to my computer and checking email, I thought I had better change clothes to be ready when she wanted to go to Panera. I also got her morning medicine ready for her, closed down my computer and put it in its case. Then she came out before I had gotten everything ready. When she is ready to go, she doesn’t like to wait on me. I noticed that she was wearing brown shoes with her black slacks. I asked if she had wanted to wear brown with what she was wearing. She said, “No.” I went back to find a pair of black shoes. I looked everywhere without success. Then I decided to look under the furniture in our bedroom. I knew she had been wearing black shoes there last night. I found one shoe under her chair along with some socks and tissues. It is a cold morning; so I then went to get coats for each of us. In the meantime, she had gone outside to pull leaves while waiting for me. As I walked by one of our bedrooms, I noticed that she had a couple of her outfits laid out on the bed. I’m not sure why, but I pulled back the top to one outfit and found one pair of black shoes and the mate to the other black shoe I had found under her chair. I put one pair of shoes in her closet and took the other to give to Kate.

As often happens, I couldn’t’ find Kate’s iPad. She uses it to work jigsaw puzzles at Panera. I used the Locate My iPhone app to find it. Then I rushed back to the kitchen with her shoes in one hand, put on my coat, picked up hers, and got my laptop case with my computer and our iPads, and went outside. She put her coat on right away. We got in the car where she put on her shoes. We arrived at Panera, and I discovered I had left our cups at home. That’s a minor thing, of course, but that is one of the things I always do. We save 80 cents on each drink when we bring our own cups. After we were seated a few minutes, I remembered that we have a luncheon at church tomorrow, and I had not put that on the calendar in my phone. When I reached in my pocket for the phone, I discovered that I had left it charging at home. Each one of these things is of little importance, but the whole episode is a good illustration of how I frequently slip on a variety of things that I might not have done otherwise. If I can just limit this to the unimportant things, I should be fine.

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Having a Sitter is Working

I am writing this post while we are at Panera and am going to relate an incident that just occurred before going on with the topic of the day. A few minutes ago, I was talking to a couple we see her almost every day. They were leaving, and when we said our goodbyes, I turned around and bumped the table at which Kate and I are sitting. As I have noted before, one of Kate’s symptoms is reacting strongly to noises, bumps when we are driving, and other surprises. When I bumped the table, she gave me a dirty look and said, “You always do that.” I always take this humorously since she says this occasionally, but it never relates to a specific thing that I do on a repeated basis. One reason I am able to relate to it humorously is that the dirty look she gives me is not a mean-spirited one. It seems to be more of her effort to respond in a kind way to something that has startled her.

Pardon that diversion, it was just an event that occurred as I was starting this post about the sitter situation. As the heading suggests, things continue to go well. We continue to have just two sitters, one who comes on Monday (Mary) and another who comes on Wednesday and Friday (Anita). Kate likes both of them. I still cannot detect any hesitation or reservation about their being here. In fact, one of the things she likes is their being able to take her to Panera while I am gone. That is a relief for me as I had been concerned about Kate’s having a 4-hour block of time that was all at home with someone who is still a bit of a stranger.

Kate conveys her comfort with the sitter in several different ways. First of all, she is very welcoming to the sitter when she arrives. She always has a bright smile on her face indicating that she is glad to see her. Second, she sometimes says things when I am present with the her and the sitter before leaving. For example, this past Friday as I was driving out of the driveway, I waved to her and Mary and said that I was headed to the Y. Kate waved back and said, “I’m in good hands.” Yesterday before leaving, I handed Anita the Panera card and said they might want to go to Panera. Kate responded quickly. She put her hand on Anita’s shoulder and said enthusiastically, “We want to go to Panera, don’t we.”

Yesterday, I returned home just a few minutes before the end of the 4-hour period the sitter is here. I found that Kate and Anita were not home. I figured they were at Panera. They didn’t get back until almost fifteen minutes later which would have been after Anita’s shift was over. I am impressed with Anita. One of the first things she said to me was that she had clocked out at 4:00. She was reassuring me that I wasn’t going to be billed for her going beyond the time. After Anita left, Kate mentioned how sharp she is, something that she says about most people she meets. It’s an indication of her liking the person and also a sign that understanding things going on around is such a challenge that she is impressed when she sees other handling things with ease. As you can imagine, I am quite satisfied with how things are going with the sitter.