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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.

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Dropping Her Guard

Over the weekend, Kate and I went to see the movie, Jane, about the life of Jane Goodall. We were both amazed at the way the chimps in the wild became comfortable with Goodall after they were in close proximity for a good while. Some of this was fostered by Goodall herself by providing a supply of bananas that required the chimps to come closer and closer. We observed something similar on a PBS special on Nature recently. A photographer followed a cheetah and her cubs for a period of about two years. The mother cheetah and her cubs became so accustomed to the photographer that he was ultimately able to pet her and put a collar with a GPS device around her neck.

With these things in mind, I am noting that Kate is also showing more signs of dropping her guard with me. I feel sure something similar will occur with others. In Kate’s case compared to the wild animals mentioned above, she is influenced not only by having been with me a long time. I believe this change is also a function of the disease. It is much like an innocent child who doesn’t realize that what she says or does will be interpreted differently from the way she had wanted or intended. Let me give you an example of the kinds of things I am thinking about.

As we left the restaurant after lunch today, Kate heard a news item about a politician getting caught in lie. She didn’t understand and asked me to explain, a very common occurrence. That itself is a small example. In this case, after I gave her an explanation, she said, “You’re gonna have to explain this to me later.” Her words and they way they were expressed clearly showed that she simply didn’t understand, and it was not something that was very difficult. It would not surprise me if she had done the same thing if she had been with someone else.

Another example occurred after we were home. She changed her top to work in the yard. After buttoning her shirt, I heard her laugh. When I looked at her I could see that the right and left sides of the shirt did not meet as they should. I said, “You got a button out of place.” She said, “Two buttons.” She had been able to laugh at herself for doing this. Unlike the frustration she expressed in earlier stages, she was now able to look t what she had done with a touch of amusement.

She was struggling a little to get her shirt buttoned correctly; so I helped. She accepted my help without any problem. It took me a moment to get the two sides of the shirt as they should be. I said, “This can be tricky.” She said, “It really can be.” This exchange was done very naturally without feeling that this was a symptom of her AD. Over the past year I have more of this kind of behavior. It makes me think of what many people say about someone with dementia. “At least, she doesn’t know.” I can see we are moving in that direction. I also think her receptivity to the sitters, especially letting them take her to Panera, is another indication of this change.

Apart from these things, I see more and more little things that I have seen in the past. The difference is that now so many things are happening even in a single day. Several things come to mind. The weather has cooled in the past week, and I have given her an old jacket of my dad’s to use when she is working outside. It is a good warm jacket with one problem. It has a warm liner that we can take out. The problem is that each time she takes it off, the lining in the sleeves comes out. This leads to much confusion when she puts it on again.

She likes to use clippers when she is working with her shrubs, but he keeps losing them. Long again, I might buy fewer than six or eight pair over a six-month period. A few days ago, I bought her three new pair. She has already lost two of them, one the first time out, the other the second time. Earlier today, I looked around the shrubbery but didn’t find either one. I did, however, find a pair of sunglasses I bought about six weeks ago. They had been missing for at least a month.

After getting her shirt buttoned, she wanted get something to drink. She went to the refrigerator and poured herself a small glass of apple juice. Then she went outside without drinking it. She also walked by the jacket that I had just gotten out for her.

Fortunately, none of these things represents a serious problem. In the scheme of things they are very small. At this point, I have been able to adapt well enough that they don’t bother me. I am just glad that she seems happy and hope this continues for a long time.

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More Signs of Compliance

Today is Sunday, and it’s been a good day. Kate was up reasonably early though not as early as yesterday and the day before. I tried to interest her in church, but she didn’t bite. We did make our usual visit to Panera. Then we came home for about 45 minutes before leaving for lunch. Kate to a brief rest. Once I mentioned that it was about time for lunch, she got up both willingly and quickly. This was not characteristic of her one or two years ago. She is much quicker to come in from outside or stop whatever she is doing inside when I tell it is time to go. That certainly makes my life, and her, much better.

For the first time in quite a while we had a success with a movie, Jane, a documentary about Jane Goodall. It was an excellent movie that was enhanced by the discovery of over 100 hours taken Gumbe where she studied chimpanzees for thirty years. Kate loved it. As we walked out, she said, “This should be shown in every school.” Hers is a remarkable story and having original videos so that we could really see her with the chimps added to its impact.

After returning home from dinner, Kate went to her room and came back with a robe. This is something that occurs frequently when she has intended to get a gown. I asked her if she had wanted a gown. She looked a little surprised and then went back to get one. She brought one back to the bedroom but also brought a different robe. She had obviously forgotten that she had already brought one.

As I was getting out of the shower, she came in and said, “Question. Do you think I should go ahead and get into bed?” I told her I thought that would be a good idea. She doesn’t ask me every night, but it is common for her to ask me if it is time for bed and/or if she should put on a night gown. I am not sure what has prompted this. My suspicion is that there are so many things that I tell her it is time for that she is beginning to anticipate my questions. She is very sweet when she asks, and I must say I feel a touch of sadness when she feels she needs to ask me questions like this.

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An Early Start Yesterday

I’ve always been an early riser. Until the sitter started coming in September I had been getting up at 5:00, and sometimes as early as 4:30, on Monday, Wednesday, and Friday to get to the Y. With engagement of a sitter, I started going to the Y in the afternoon. I stopped using an alarm quite a while ago because it disturbed Kate. I am settling into getting up closer to 6:00 every morning of the week.

Kate’s routine has been different since she retired from the public school system in 1990. Since the time of her diagnosis in 2011, she has rarely gotten up before 8:00. In the last few years, it has been common for her to get up, get some juice and yogurt, and then go back to bed for another hour or so. Her sleeping pattern, like other aspects of her life, vary a good bit from one day to another. My habits are much more regular, and I have tried to maintain a regular schedule during the time that I have been caring for Kate. That has worked well in terms of the times of the day we eat lunch and dinner, but I have deliberately not tried to put Kate on my morning schedule. We have always operated independently in the morning. We both like it that way. I let her sleep as late as she wants. That gives me some quiet time to take care of getting my breakfast, checking email, taking care of household chores like washing clothes or dishes, completing any obligations in my volunteer activities, and working on this journal.

On the whole, I am pleased with the way this has worked out. There are occasions, however, when I have to make changes in my schedule. Yesterday was one of those. I was just about to leave for my morning walk at 7:15 when Kate walked into the kitchen ready to go to Panera. I hesitated a moment and then decided to change to my regular clothes and go to Panera. As it turned out, that worked well. Kate was ready to come back home after an hour or so. She wanted to work outside which I knew would occupy her for a while; so I took my walk. It had warmed up a bit since 7:15, and the sun was out. It made for an unusually nice walk.

The rest of the day went well. The sitter was here at 1:00, and I left for a meeting at the bank. As I left, Kate and the sitter were outside. I told them I was off to a meeting. Kate said, “I’m in good hands.” Once again, I felt good that she has accepted having a sitter so naturally. After my meeting, I dropped by Whole Foods with my laptop and worked on this journal until time to relieve the sitter at 5:00. When I got home, Kate and the sitter were in the family room where Kate was working on her iPad. Since having a sitter, I have purchased a gift card at Panera. I told the sitter to use it if Kate wanted to go to Panera for a bagel while I was gone. They almost always do. This time Melissa told me that Kate had not wanted to go out. I’m not sure why. It made me wonder if she has felt a little self-conscious about taking her sitter with her. I would be a bit surprised since they have done this several times before.

We finished the day at our favorite pizza place. Then we came back home and watched the evening news while Kate worked on her iPad. It had been a good day.

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A Bad Start, But a Great Finish

Yesterday was our first cold day of the season. That follows a lengthy period of time when our temperatures have been well above normal. Apart from the cooler temperature, it rained on and off the entire day and into the night. I don’t think the weather is likely to have affected Kate’s mood, but she didn’t begin the day as cheerfully as she has been doing lately. She was up earlier. That meant an earlier visit to Panera. After an hour she had a very dejected look on her face that made me surmise (correctly) that she was ready to go home.

On most days, she would have wanted to go directly to the yard to pull leaves. In this case, the weather prevented that. I told her I would build a fire in the fireplace and that we could pull up our chairs and enjoy the first fire of the season. She seemed to like that. We have a lot of wood that is left over from the past two years when it was much warmer than usual. The fire was going in a flash, and both of us commented on how good it felt to relax in front of the fire. After almost an hour, Kate appeared to have had enough. She got up from her chair leaving her iPad behind. She started re-arranging some of the knick knacks on the entertainment center in the living room. It was obvious she was ready for something else. I suggested we go to lunch. She accepted.

I began to think about the rest of the day. She had a facial scheduled for 4:00, and we were going to attend Jazz Night at Casa Bella at 6:00. That led me to think about her getting a manicure and pedicure. It had been a while since I had arranged that for her. I mentioned that to her on the way to lunch. She was not enthusiastic but accepted the suggestion.

We had a nice lunch at a place near our home. When we got back to the house, I called the nail shop and discovered they could take her right away; so off we went. It’s located a few doors down from Panera. While Kate was getting her nails done, I went to Panera with my laptop. She was finished about 3:15. That left us only 45 minutes before her facial. I decided that we should go back to Panera until time for her facial appointment. By this time, her mood had begun to change. She wasn’t overly cheerful, but she was not down the way she had been in the morning.

The spa where she gets her facial is a few doors from Whole Foods. I usually go there with my laptop while Kate is getting a facial or massage. About a year and a half ago, I signed her up to have a facial and a massage once a month, each about two weeks from the other. She has seemed to enjoy that. Yesterday was no exception. She was relaxed when I picked her up.

When we got home, we had less than an hour before leaving for Casa Bella. I listened to the news while she worked on her iPad. I had downloaded photos from our recent trip to Texas to her iPad. Her puzzle program allows her to create new puzzles with any of the photos. Again, she was not overly enthusiastic, but she did get a kick out of seeing the pictures. She hasn’t figured out how to select the photos and create a puzzle, but I can do that for her. After she completes each photo puzzle I have created, she selects one of the stock puzzles that come with the program. Each time she runs into a road block, I create a new photo puzzle for her. I am going to continue adding new photos to her iPad so that she will have a large selection from which I can choose.

We got to Casa Bella a few minutes after 6:00 and sat at our usual table with the parents of the owners of the restaurant. Kate and I like both of them, and last night no one else joined us at the table. That meant it was much easier to enjoy the conversation. I am sure this made the experience a better one for Kate. As I have noted in previous posts, we attend Opera Night on the first Thursday of each month as well as Broadway Night on the third Thursday of the month. Jazz Night is a new musical program that began a few weeks ago. Last night was only the second time we have attended.

The program was superb. We had heard that a clarinetist we know from the local symphony was going to be playing but nothing else. It turned out that he was part of a trio of extremely talented musicians that included a an outstanding female vocalist and a guitarist. The music consisted of many familiar ballads. We and the rest of the audience were thrilled with the performance. To top things off, we ran into several other people we know who had not attended before. That made the evening very special in a variety of ways. A day that had started out rocky ended on a high note. The events of the morning were long forgotten. Of course, that was especially true for Kate.