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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.

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Enjoying The Christmas Season

Kate and I returned from my doctor’s appointment almost two hours before we were to leave for Jazz Night at Casa Bella. She asked (with hand signals) if she could work in the yard. I told her she could. Then she asked (verbally), “Where should I start? In the front or in the back?” She said she hadn’t worked in the back as much; so I said, “Well, why don’t you start there?” As often happens, she came inside to the bathroom and then went to the front yard, forgetting entirely that she was going to the back. This is a regular pattern. She does work more in the front. I suspect that habit leads her to do it each time she goes out.

I called her inside in plenty of time to get ready to go out. I suggested that she change her clothes and told her I would pick out something for her. She accepted that very naturally without a complaint at all. I picked out a red sweater and a pair of black pants and put them on the bed in her room. She liked the selection. I left the room for her to change. A little while later, she came out wearing the same clothes she had been wearing before. I reminded her of the clothes I had picked out for her. She asked where they were. I took her back to her room and pointed them out. This time she got it. What makes this incident worth pointing out is that she was so accepting of my suggestions and help. This makes things easier for me, but as I always say, it signals further decline in her condition.

The evening at Casa Bella was everything I could have hoped for. The food was good, and the musicians excellent. It was a program with a lot of Christmas music. This was our fourth musical program in the past two weeks. We are definitely enjoying the season.

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Expressing Gratitude

One of the ways in which I, as a caregiver, have been fortunate throughout my care for Kate is her own expressions of gratitude. I know that many others who care for a person with dementia are not on the receiving of these acts of appreciation. I feel for them. It is enough to have one’s life organized around the care for another person. To do so without any sign gratitude would be unbearable. When you love someone and that person acknowledges her gratitude, caregiving is much easier.

It is true that Kate is more irritable than she was before AD. Those moments are usually rather fleeting. On the other hand, her expression of appreciation has punctuated the entire journey. It doesn’t occur all the time but often enough that it tells me she knows how dependent on me she has become. These expressions come in very small packages. Here are two recent examples.

The other day in a restaurant without anything to prompt her, she said, “Thank you for everything you do for me.” I don’t know why she said it at that time, but I interpreted it as her recognition that I do a lot for her. Another occurred last night. As we walked to the car after dinner, I walked ahead of her and opened the car door for her. She said, “You didn’t have to do that.” I said, “I know I didn’t. I just wanted to. I want to take care of you.” She responded, “You do. You take very good care of me.”

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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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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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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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Contrasts Between Highs and Lows

Since my last entry on Wednesday when we went to the Shepherd’s Center and to Nashville, we have had a number of highs (a lot) and some lows (a few). The highs include attending a class at the Shepherd’s Center, visiting with the Davises in Nashville, Kate’s working for almost 3 hours in the yard yesterday morning and again for a while in the afternoon, and attending Opera Thursday last night at Casa Bella. The lows involve our visit with Ellen and several instances involving Kate’s clothes. Let me comment first on our time with Ellen.

This is another instance in which I might have prevented a problem but let it slip up on me. First of all, we found that Ellen’s speech was not better than it was on our previous visit. In fact, it seemed like we were able to understand less of what she said than before. We had a good conversation. We arrived just after 2:30, and planned to stay until 4:30. Just before 3:45, Kate indicated that it was time to go. I held back for a few minutes but then gave in to her desire to leave. When we got in the car, I learned that she had felt that Ellen and I dominated the conversation and left her out. She is right that we dominated the conversation. Ellen talked a lot as she has done on our previous visits. She has always been a big talker; however, I have felt that she must not have as much opportunity for conversation now that she is in assisted living. I think it is for that reason that she talks so much now which is ironic since it is so hard for her to be understood.

During the time we were there, I noticed that Kate was not talking much. I attributed that to her not having anything to say. I think, however, that the problem is that she is slow to interject her thoughts in a conversation while Ellen and I are more forceful. Kate was quite hurt by this which was a great disappointment on my part because I have been thinking of these visits as something that is good for her. I believe that the next time we visit I will leave the room for a while and give Ellen and Kate a chance to talk on their own. In addition, I will be more sensitive to Kate’s need to engage more fully in the conversation and not be so quick to jump in when there is a pause.

The other lows have involved Kate’s clothes once again. I am trying now to set out the clothes she could wear (though I haven’t yet done so this morning). I am finding that when I lay them out, she forgets. She throws or puts them other places. When I ask about them, she has no idea where they are or were or that I had put them out for her in the first place. The good news is that she seems to accept my selecting her clothes, something she has not wanted me to do in the past. This suggests a transition from her taking control of her clothes to my doing so.

As I have reported in the past, she has been having moments of panic attacks when she misplaces things. Most often this involves her clothes. Once yesterday, when she came out dressed in something different from what I had given her, she didn’t panic when I took her back to her room and looked for the clothes I had selected. She simply accepted my suggestion. It was an act of giving in. While this makes it easier for me, it is also hard on me to see her give up her independence because I know how important that has been to her.

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Recovering from our Colds

Today seemed like a day of progress in recovery from our colds, at least for Kate . It is peculiar, but we both seem to have trouble early in the day but are better later in the afternoon and evening. It has been hard for me to determine how much of her listlessness is a result of her illness and how much might be a result of her Alzheimer’s. I suppose I will see in a few days. I think it has been a combination.

She is still asserting her independence but also showing her need for and acceptance of my help. Today, for example, I noticed that she had not taken her medicine. Instead of telling her that she had forgotten (which I usually do) I simply took the pills I knew she really needed and gave them to her. She never asked any questions, just took them. I might have thought she would ask where the others were, but she didn’t. She easily accepted my help. On the other hand, tonight when I gave her her medicine (she had forgotten to take it again), I told her to be careful because there were a lot of them. She said something to me that clearly indicated that she didn’t need me to tell her that. The reason I had done so was that earlier when I had given her the pills she had missed this morning, she dropped one of them in her bed and couldn’t find it.

I am sensing there is greater importance in my trying not to push her too much. After getting out of a movie at 2:30 today, I told her we needed to get to our haircuts. She expressed displeasure in that prospect. Normally she would be glad to get a haircut. It turned out she was tired and wanted to go home. We had been away from home since 10:00 this morning. As it turned out, I was wrong. When we got to the salon for our haircuts, we found out that they are really scheduled for next Tuesday. Thus she got to spend the balance of the afternoon (almost a full 3 hours) at home before we went to dinner. I have tried not to over schedule in the past, but this experience confirms just how important that is. She likes to have breaks at home and by herself (I think). I need to make sure she gets this time while also trying to minimize her boredom. It turned out that going to Panera, having lunch, and then seeing a movie was all she needed. It was time for a break, and she got it.

I continue to be surprised at some of her confusion. Yesterday, for example, she had gotten up from a little nap in her office. She came into the kitchen for something and was going back to our bedroom and asked, “”Do we have an iPad?” I think that she was momentarily forgetting that she has a new iPad to replace the one that was stolen last week.

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Enjoying Home

Today marks our third day at home after the cruise. I continue to question my plans for a Mediterranean  cruise that I booked for May. I have serious doubts though I haven’t done it officially. I will probably do it this week. Being home has been much more relaxing. I haven’t felt the same degree of stress to take care of Kate. She also seems to have enjoyed being here. We have been back to some of our favorite restaurants. We went to Lowe’s after lunch on Sunday. She bought another $145 worth of plants. Then she worked in the yard for four hours. It was good for her.

We still don’t talk directly about her Alzheimer’s, but occasional oblique references occur. Today, for example, she remarked about something she had done. I said, “”Don’t we have fun?” She said, “”Well, I wouldn’’t go that far.” I said, “”At least you keep your sense of humor.” This afternoon she couldn’t find her iPad. I found it. She was so relieved. She said, “”At least I didn’t lose it.” She said it seriously, not as a joke. It conveys to me how much frustration she experiences over misplacing things all the time.

I have noticed other signs of her acknowledging that she looks to me to see if it is all right to do things in much the way a child might do. One of those occurred yesterday when she had picked out something to wear. She asked, “”Is this all right?” I told her it was perfect.” Tonight as I was getting ready to take a shower about 8:30, she said, “”I am going to bed. Is that all right?” I told her she could go to bed anytime she wants.

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Moments of despair

How quickly things can change. After a lengthy period of joy and contentment (as expressed in my previous post), last night we hit a low point. About 5:00 Kate came into the kitchen where I was working on the computer. I could see immediately that she was wearing a sad face. I got up, walked over to her, and asked, “Bored?” (This is an increasingly common complaint.) She answered, “Bored and hungry.” I told her we could go to an early dinner and started to offer a few suggested places when she asked, “Would you take me to Chalupas?” This is her favorite Mexican restaurant. She seems to see it as a place of comfort. I am not sure whether it is just the food or the food and the general atmosphere of the place. We know the owner and almost all of the servers with whom I always engage in conversations in Spanish. She likes hearing me speak Spanish and likes the people there.

At any rate, I told her I would be glad to take her and said something like this. “You really like that place. This would be the third time we have eaten there in the past 7-8 days.” She said she hadn’t realized that and we could go some other place. I told her I would be glad to take her, but I wanted to get something different for myself. Then I told her I could just get a single cheese burrito and then have some V8 when I got back home. (This represents one of the challenges I have eating out with Kate. She loves carbs. In the past week we have eaten Mexican 3 times, pizza twice (2 nights in succession), pancakes for breakfast, ice cream at Marble Slab, and a bigger-than-usual meal with cheesecake at Casa Bella. I have gained 4 pounds in the last week and my stomach is feeling a little bloated; so I feel the need of something lighter than what she likes.

As we were walking out the door for the restaurant, she said, “I hate being so dependent on you.” Before getting to the car, she said, “I could live to be 90.” She seemed quite depressed. Although I tried to reassure her that I was happy to take care of her, this didn’t help. She perked up a little while at the restaurant, but her being dependent was clearly still on her mind. While we were in the car coming home, I suggested that we look for a movie on TV. Then I suggested watching “Doc Martin,” a BBC series that is available through Netflix. When we got home, I started thinking about something lighter and more upbeat and suggested we might find an old Andy Griffith or something similar. She liked that. I got on Netflix and search for Dick van Dyke and found it. We ended up watching 4 episodes, and she loved it; so did I. When we turned off the TV and went to bed, everything seemed all right. I was wrong. I heard her get up just after 11:00 and go into her office. In a few minutes, I went in and found her in the bed with the TV turned on to an old black-and-white movie. She has always found comfort in having the TV on when she is trying to go to sleep. She told me she couldn’t sleep, something very unusual these days. I asked if she wouldn’t like to come back to bed with me and that we could turn on the TV or listen to music. She chose music. It took a while for us to get back to sleep, but we did and slept until almost 7:00 this morning.

She wanted to go to Lowe’s for more plants. We did so around 9:00. Right now she is outside planting them. It is cooler this morning. I will let her stay out as long as she likes because I feel it is her therapy. Then we will go to lunch. I hope the depression goes away before evening.