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Needing Help With Clothes

For the second day in a row, Kate came into the kitchen and asked, “What can I wear?” I asked if she would like me to pick out something for her. She said yes. It is obvious we are going through a transition. It doesn’t seem that long ago that she didn’t want me to help with the selection of clothes at all. She actually resented it. Over the years, she has accepted more involvement from me. I have attempted to respect her desire for independence in this area. I have tended to get involved only when we were going somewhere that would call for something a little nicer than her everyday clothes. I have also asked her to change clothes when they had gotten too dirty from working outside. That is something about which I have become much more accepting than in the past.

I feel her struggle for independence has been a good thing. It saddens me to see her turn over her clothes to me. That is one of the last things she has been able to do almost completely on her own. The primary way in which I try to help her is by picking up clothes that have been left in various places around the house and putting them in the laundry or back in the closet if they are clean. I also try to keep her clothes somewhat organized. I have never taken all her clothes out of the closet and started over. What I have done is to move her clothes so that the ones she wears regularly are all at the front of the closet, pants on the right side and tops on the left. I also arrange the clothes by color. I am not sure that it helps her, but it helps me when putting her clothes up or getting clothes out for her.

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A First

Kate and I were to attend a program of our music club this evening. Although its members are involved in a wide variety of musical genres, there is a heavy orientation toward classical music that is reflected in our programs. Kate, whose taste in music is more in the direction of popular music and popular classics has never been as taken with the club as I have. For that reason, she hasn’t attended a meeting in over a year. Last year, I left her at home by herself. I haven’t felt comfortable doing that this year. Since the Christmas program is always a choral group that sings a variety of Christmas music much of which is well-known, I thought I might take her to this one. I am the treasurer, and I needed to deliver a couple of checks as well.

Suspecting that Kate would not be excited about going with me, I decided to test the water by telling her of the meeting several times over the past three days. Each time she had forgotten, and each time she groaned. Then I told her that I thought she would like the program and that we would not stay long and come home right after the program ended instead of staying for the reception afterwards. Each time she agreed to go.

Late this afternoon, I mentioned it twice, once at dinner and once again after we got home. Once again she was not happy about it but said she would go. I picked out her clothes and laid them out on her bed. She was happy about that. I left her to get dressed while I wrote out a couple of checks. About ten minutes later, she came out in a night gown. I said, “You’re in your night gown?” She looked at me with great surprise. I reminded her of the meeting. She had completely forgotten. I brought her clothes back to her. Then she said she didn’t want to go and wanted me to go without her. I told her I didn’t feel comfortable leaving her alone. I probably could have coaxed her into going. I didn’t want to do that. I told her we would stay home but we would have to take my checks to someone else to deliver to the correct parties, and that is what we did.

On a number of occasions Kate has not wanted to go somewhere, and I have made the same decision. The difference tonight was that I had a responsibility to deliver the checks and had told several people that we would be there. In addition, we are supposed to let the secretary know if we cannot attend. The assumption is that the RSVP would come earlier than the time we now had before the meeting.

There is really no great loss in our not having gone, but it was a program I believe Kate would have enjoyed. I know that I would have. I also felt that this was likely to be the last time we attended as a couple.

It is also an indicator of Kate’s continuing downward spiral. In the future, I will need to arrange for a sitter the evenings the club meets. That is only four times a year, only two of which remain in this year. At times like these, I try to be thankful for how slowly she has progressed to this point. I never thought when she was diagnosed seven years ago that I would even have considered her going as a possibility. I am both sad and grateful.

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Sleeping Late Today

It is now 10:48 and Kate is still sleeping soundly. She got up around 9:30 to go to the bathroom but went back to bed. This is really highly unusual although she did sleep this late sometimes in the past few weeks. It could be that this is related to her cold although both our colds have been very mild. They have not interfered with any of our usual activity. It was a beautiful day yesterday, and she worked outside for more than two hours at one stretch. As with many other behaviors, it is not easy to explain each one; however, I am always trying to see any signs of a pattern than may be developing. If she is not awake by 11:00, I will wake her up for lunch. The sitter is scheduled for 1:00; so we won’t have as much time as I would like.

While she has been in bed, I have accomplished a number of things that I should have done before. I wrote two thank you letters, one to the Session of our church, the other to the man who wrote the resolution they had presented to me a couple of weeks ago. I also made hotel reservations in Lubbock for Christmas.

Since shortly after Kate’s retirement from her last school in 1990, a group of teachers with January birthdays has gotten together in January of each year to celebrate. This hasn’t happened the past two years, and I wanted to get them together one more time while Kate can still enjoy it. This morning I called one of them who has organized the event each year to see about our doing it this year. He had been thinking the same thing; so we are going to pick a date and then check with everyone else to see if it works. This was a special group to Kate. I want her to get together with them one more time.

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Sign Language Can Be Confusing

Kate continues to use hand signals to ask some of her questions. Most of the time I understand what she is asking, but not always. Take this morning, for example. We were waiting at a stop light on the way to Panera when she looked at me and pointed in the direction of her cup sitting in the holder of the console. She also had the lid of the cup in her hand. I thought she was asking whether or not to take her cup into Panera, but that is something she is more likely to ask when we arrive at another restaurant. She gave me a disconcerted (irritated) look, and I told her I didn’t know what she wanted. That prompted another look. Then I realized that what she wanted was a napkin. I try to keep them in the car to wipe the saliva from her mouth. (She still doesn’t swallow her saliva.) When I realized that was what she wanted, I opened the console and gave her a napkin. Then I said, “I thought you wanted something to do with your cup.” She said, “Nice try, but I’m not going to let you get away with that.” I said, “Well, I usually do a pretty good job.” She smiled and said, “Yes, you do.”

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Confusion This Evening

Kate worked outside from the time we returned from lunch (about 2:00) until I called her in for dinner about 5:15. As she has done over the past few months, she came in right away. You may recall that getting her to come in had been a problem for a good while. It wasn’t that she objected. It’s just that she would forget to come in. As she came inside, I asked if she wanted to shower before going to dinner. She said she did. Then she asked by hand signals which bathroom to use. In a few minutes, she came into the family room where I was watching a football game. She said, “Shoes” and pointed to her stocking feet. I went to the garage where she had left them and brought them to her. It was obvious that she had forgotten about showering. Apart from a few soiled spots on the top she was wearing, she looked fine, and I didn’t suggest that she change.

While we were eating, I received a text from Jesse who was in Indianapolis with her family for the weekend. They are big Tinan fans and are attending tomorrow’s game with the Colts. She had attached pictures of her boys at Topgolf. I showed them to Kate, and she asked their names. When I told her, she gave her usual response, “I know that; it just wouldn’t come to me.” Then she asked, “Who is my daughter?” I told her, and she gave a similar reply. I said, “That’s all right. Sometimes names just don’t come, especially when you are tired. You lost some sleep over the past few days.” Then she said, “And when you are hungry.”

During the meal, I told her that I was sure that Kevin’s family was glad to have Brian home for the holidays. There a pause. Then she said, “What’s his name again?” I told her. Then she asked, “Who are his parents?” She has asked this question a lot over the past month or longer.

When we got home, I went to our bathroom to brush my teeth. She was coming out. I told her I would get her medicine. She said, “I want to brush my teeth, but there’s not any of the stuff in there.” I told her I thought there was. I went to the drawer where the toothpaste and her toothbrushes are kept. They were there as usual. She just didn’t remember where to look. She has toothbrushes and toothpaste in each bathroom. She must have forgotten where it is kept.

A few minutes later, she walked into the bedroom with her robe. This has become rather typical. She gets a robe instead of her gown. When I asked if she wanted me to get her a gown, she said she did. This is also her normal reply to that question. I still haven’t figured out why she does this. Her gowns and her robes are all together in her closet. It just seems like it is easier to find a robe.

Throughout all of these things she has been in a good mood. She is unusually cooperative these days and happy as well.

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A Sound of Music Evening

Although we have had a lot of things to take care of before our trip to Memphis today, we both enjoyed seeing the Sound of Music last night. I suspect the audience knew more of the music from this musical than any other musical. I know that is the case for us. It made for a good holiday treat. It was also a good night socially. As usual in Knoxville, we saw a number of people we know. One of those was Kate’s physician, Dr. Reynold’s.

We also had  a good experience at dinner. Kate had the chicken parmigiana. I had a spinach salad with grilled chicken a poached pears. We also spoke to a couple of people we know. I believe this aspect of small-city life has been good for us because of all the social connections.

The only noteworthy thing that happened last night was a new sign of Kate’s insecurity. When we arrived at the Bijou Theater, we both decided to make stop by the restroom before the performance. I walked her to the ladies room. I told her I was going to the men’s room and to wait for me right where I was leaving her if I wasn’t back when she was through. She quickly and sternly said, “Wait right here until I come out.” I did. To me, this is not only an indication of insecurity but recognition (at least partial) of her condition.

 Kate was enthusiastic about the musical. I was especially glad to see her continued interest in live performances since she doesn’t enjoy movies as much anymore.

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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.