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Asking Permission

Despite her objections that I am trying to control too much of her life, it is interesting that Kate is increasingly asking if it is all right for her to do things. Two examples occurred at dinner this evening. After ordering, she asked me if she could start “my album tomorrow.” I told her that would be good. Then I asked if she were talking about her Chautauqua album. She said yes. After dinner, she pointed to the parsley that she had taken from her plate and placed on a paper napkin on the table. Without using words, she was asking if she should take the parsley home for her compost. That is what she always does. Why she happened to ask about doing that tonight I can’t imagine. I told her that she could take it if she wanted to. She said something like, “I don’t have to.” She brought it with her when we left.

When we got home, we both sat in the family room where I watched the news on PBS while she worked puzzles on her iPad. When it was almost 8:00, I told her I was going to take my shower. She decided to go into the bedroom. She sat down on the bed and pointed to the charging cable for her iPad. She didn’t say anything. I didn’t understand what she meant but said, “Yes.” When I said that, she reached down to disconnect the cable from the surge protector. Then I asked what she was going to do. She asked me what I wanted her to do. I told her she could leave it plugged in, that we were “not going anywhere now.” Then she said, “What am I going to do now?” I told her that it was getting near the time she would go to bed and that she might put on her night clothes. She indicated she would do that. Then she picked up her iPad and started to work on it in bed. After my shower, she was still in her clothes. I walked over to her side of the bed. She pointed to the sweater she was wearing. Then she said, “This or my night clothes?” I said, “Your night clothes.” In a few minutes, she got up and changed. Just another illustration of using minimal words and asking for my guidance even though she still wants to be very independent.

Yesterday afternoon, Kate and I were talking about some of our memories when I suggested that we start a project of writing down our memories from our life together. She liked the idea. This afternoon she had reached a point when she was ready for a change. We had been to Panera this morning. Then we had lunch. When we got home, she pruned in the yard. Then she had worked on her iPad for a while. I could tell she was getting bored. Instead of asking if she would like me to take her to Panera, I asked if she would like to work on our memory project. She liked the idea and suggested we do it at Panera. We did it. She told me from the start that she would have to depend on my memory. I suggested we try to write down how we met and something about our first date. Then we started a second section on places we have lived. We only addressed the first place in Fort Worth. I could see she was getting tired and suggested we stop. I told her that I didn’t want us to think of this as work, that we would not have to work on it every day, just as we felt we wanted to. This first effort was better than I might have predicted.

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Good Day with Friends

This morning we went to Nashville to have lunch with our friends, Angie and Tom Robinson. It was a good day. Kate handled herself quite well. There were a few things that she said that were not true (e.g., she said that we had eaten a Japanese meal that Jan Greeley had fixed.). I had an email from Tom when we returned home that said they thought she had not changed a bit since the last time we were together. Once again this is an illustration of how important long-term memory and strong social skills can be to superficial social interactions. We came home a little earlier than we usually do because I felt she was getting tired and a little withdrawn.

This morning before leaving I mentioned something about our not having found the two missing remote controls. She said, “Let’s not worry about it.” I told her I loved her. Then I said, “You know, you are handling your Alzheimer’s well.” She agreed. Then I said, “Let me ask you a question. Do you ever associate your misplacing things like the remote controls with Alzheimer’s ?” She said, “No.” I then said, “That’ one of the things that goes along with Alzheimer’s. You put things down in one place but don’t remember where you put them. I hope that should make you feel better about it. You really can’t help it.” This is the first time I have ever pointed out an aspect of her behavior that is connected to Alzheimer’s. I feel sure that she won’t remember our conversation, but it confirmed what I had suspected for some time. She doesn’t associate many of the things she does with her diagnosis. I don’t plan to make a point of it every time he does something like this.

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Last day at Chautauqua

This is Friday morning. Our last day at Chautauqua. Not the last day for this visit; the last time we will ever make this trip – at least together. If we had left last week, I believe I would have been sadder. The fact that I decided on a third week was a good decision, but it has also given me the feeling that it is time to get back home. I suspect the fact that Kate has been so tired the past few days (Is it almost a week?), has influenced me. She has only been to the evening entertainment once or twice in the three weeks we have been here. Yesterday she missed the morning lecture. I think it is time for her to be home even though she gets bored there. I believe this is simply a natural step in the evolution of her Alzheimer’s. I will always be glad that we had this much time here.

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Moments of Pleasure

Yesterday was a good day. I had to strongly encourage Kate to attend morning worship, but she loved the preacher as she had on Sunday. If she had been able to remember hearing him, she would have been eager to go. One of the good reasons to attend the worship service is to assure ourselves of a good seat for the main lecture of the day. At the end of worship, Kate wanted to use the restroom. I took her there and waited outside the door for her. Then we walked back to the seating. I always walk ahead of her. She likes me to do this because she doesn’t know which way to go. When we got to our row, I walked in to our seats. When I looked back, Kate was not behind me. I looked closer to the front and saw her walk into the first row. She was about to take a seat when I called to her. She didn’t see me at first but finally did and came to sit down with me.

One of the symptoms she has had for several years has worsened. That is her eyesight. I don’t mean to say that there is something wrong with her eyes although she is in the early stage of her cataract development. I am confident from what I have learned about Alzheimer’s is that it is part of the dysfunctional patterns of the brain. She frequently doesn’t see things that are right in front of her. When I point to something I want her to see, it takes her a while to focus on that particular thing. Often she never sees what I was pointing out. I think what is happening now is that she loses sight of me as she is following. For quite sometime, I have looked back periodically to see if she is still right behind me. I was doing so as we went back to our seat; however, it only takes a moment of distraction on her part to lose me.

Greg Boyle did another outstanding job presenting a sermon consisting mostly of stories of his life working with gang members to make their lives better and more productive. His stories are quite moving, and, at certain moments,  he seemed moved by them as well. Kate was quite moved. I take this as a good thing as it was for me.

That was followed by the main lecture that included Pamela Paul (editor of the NYT Book Review), David Lynn (editor of The Kenyon Review), and Lorin Stein (editor of The Paris Review). They were outstanding and Roger Rosenblatt was at his best as well. It was another Chautauqua highlight for both of us
We went back to Hurlbut Methodist for lunch as we did on Monday. We got into a lengthy conversation with a woman from Ontario. She is a regular here. It was another good Chautauqua experience.

Kate was ready for a little rest after lunch and told me she would rather remain in the room than attend Bishop Spong’s lecture. I went and enjoyed it. Then I came back to see if Kate would like to attend a 3:30 lecture by a man who performs as Teddy Roosevelt. She did, and we went back to the Hall of Philosophy for that. We both enjoyed it, especially Kate.

We then went to dinner at the Afterword Café. We followed dinner by coming back to the apartment where Kate chose to remain. I went to the evening entertainment, Tiempo Libre. It was an entertaining program. The musicians described their intent to make it a Cuban party. They invited members of the audience to the front and to the stage to dance as they played. It was a good evening

When I got back to the apartment, Kate was asleep with her clothes on. I think she was worn out from the day’s activities. She got up while I took a shower and prepared for bed. Then she undressed and came to bed as well.
At 5:45 this morning, I awoke and looked at the time. Kate then asked, “Why are we here?” I answered, “We are at Chautauqua.” She didn’t say anything else. I believe she was really awake but confused about where she was. That has occurred a number of times while we are traveling. Typically, she will say something like this. “I want to take a shower in our bathroom.” That is not said as a wish but that she believes our bathroom is right here someplace. I have to say there are times during the night when she talks in her dreams. This could have been one of those occasions, but I don’t think so.

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A Very Good Weekend

Saturday morning, Kate and I made our customary trip to Panera where Kate got her blueberry muffin. We were there about an hour before we decided to eat lunch there as well. During lunch, I looked for a movie and found a movie called Me Before You. It hadn’t gotten rave reviews from the critics, but most audience reviewers liked it. We decided to try it. We came home and had a little time for Kate to rest a little. Before 6:00 we went out for pizza. It was just a simple day, but we both commented on what a nice day it had been.

Yesterday was a little fuller. Kate slept later than usual, and I simply relaxed listening to sacred music, checking email, posting a father’s day note about my dad, and reading the paper. The big event was a trip to visit Ellen and our friends the Davises in Nashville.

We reached Ellen’s place about 1:00 and stayed until 3:30. It was a very good visit. In the past, Kate has felt that other people tend to look at me more than at her. I think this occurred yesterday, but I found myself looking at Kate when Ellen would look at me. I think this helped. A couple of times I asked Kate if she would like to tell Ellen something about our trip to Lubbock or something else. In each instance, Kate said, “No, why don’t you tell her.” This has not happened much in the past. I couldn’t help thinking that it represents her awareness that she can’t remember enough to put herself in a spot like that. I don’t think Ellen thought a thing about it. It was done very naturally.

Kate and Ellen had an interesting exchange that didn’t go very far, but I thought it was going to be a little like the conversation that might occur in a support group. Ellen expressed her frustration over not being able to get her brain to come with the right words to say when she is talking. Kate said she had similar problems. They said just a few things back and forth and then moved on. On future visits, I may attempt to encourage this kind of conversation.

This was the first time we had seen Ellen since she had her seizure a month ago. I thought that her speech had worsened since then. On the other hand, I thought her walking had improved. She walked across the room quickly and showed no sign of imbalance. She said she is now using a cane instead of her walker.

From Ellen’s we went to visit Ann and Jeff Davis. Then we went out to eat together. During dinner, Ann and Kate talked to each other quite a bit. That gave Jeff and me time to talk ourselves. I told him that I was happy to see Kate have this time with Ann. We went back to their house after dinner and remained there for about an hour. Once again, there was plenty of time for Kate and Ann to talk. On the way home, Kate commented on what a good visit it had been with both Ellen as well as Ann and Jeff. I wholeheartedly agree. It was a tonic for Kate.

Today we met Evelyn, our decorator, at a tile shop where we picked out the tile and granite counter top for our master bath. Kate told me in advance that she would let me handle things. I told her I wanted to make sure we picked out things that she would like as well. When we got into looking at options and talking about the details, Kate walked around. This is something that she would have been leading if this were ten years ago. Now she seemed as though she were not interested. On the other hand, she did express pleasure on the things we picked out. Tomorrow morning we are meeting Evelyn to pick out the toilet, sinks, and fixtures. Kate did say she would like to go. I am glad, but I suspect that she will not have much to offer. Perhaps I will be wrong.

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Feeling Good

In the past few days a number of people have asked me, “How is Kate?” In each instance, I have said that she is getting along well right now. I have been clear to say that it isn’t that there is any improvement in her condition but that she and I are enjoying life. I make a point of this because I was discouraged when we returned from our cruise in January. Although I sensed that the complete change in scenery and routine were factors in her failure to enjoy the trip as much as I had hoped, it is only now that we have been back a while that I know how much impact that had on her. She suffers boredom and is periodically irritable at home, but at least she is on a fairly routine schedule. Of course, I have read and heard caregivers talk about the importance of a routine, but going through the experience of the cruise has made a greater impression on me. I suppose that it is quite normal. I don’t think any of us fully appreciates what is involved in dealing with any illness until we experience it. This morning I had a conversation with someone who is undergoing chemotherapy for lung cancer. He was telling me all the things that he has learned and never knew anything about before he became a cancer patient. I am sure that is equally true for someone who has a kidney problem and has to undergo dialysis. I definitely believe it is true for a couple facing Alzheimer’s.

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Having a Pleasant Stay in Memphis

Yesterday was Mother’s Day. Jesse and her boys drove to Nashville with friends to see Lion King; so Kate and I had the day to ourselves. At first, Kate seemed a little bored in the short time after she woke up. She didn’t get up until 9:00 or so and wasn’t dressed for the day until 10:00. Because it was Mother’s Day we had reservations for lunch. It was jam packed when we arrived, but we were seated right away. We enjoyed our meal. Then we came back to the house where Kate rested for about an hour while I worked on the computer and read the paper.

After that we went to the an old cemetery where they were having special guided tour at 3:00. For some reason Kate had originally said she didn’t want to do the tour, just visit the garden. The tour had just started when we arrived, and she seemed to enjoy it. The cemetery is beautiful, very park-like. When we finished, it was 4:15. Kate expressed interest in eating. That surprised me somewhat because we had finished a big lunch at 1:00. I do know from the past that she often feels like she is hungry long before it would be a normal time to eat. I thought about going someplace just to have something to drink. Then Kevin called to wish Kate a happy Mother’s Day. While we were talking, I drove to the river front. After Kevin’s phone call, it was 4:45; so we went into a restaurant with the intent of getting a light dinner. It turned out we split a prime rib and followed that with a Boxcar Brownie. It was two fudge brownies with three scoops of ice cream. We were stuffed but happy.

We came back to the house where we watched a little TV until Jesse and the boys followed by by their dad. He had flown home after being gone for a month or so.

We got to bed around 10:00. We had had a good day.

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Slow to Get Ready

Today we have a close friend from Nashville, Scott Greeley, who came for an overnight visit. He was scheduled to arrive between 2:30 and 3:00. During the morning, Kate worked outside. At 12:35, I went outside and told her I thought we should get ready for lunch because I wanted us to get back home in plenty of time to be ready for Scott. In a few minutes she came inside. When I didn’t hear from her by 1:25, I went back to her room. She heard me coming and said, “”What do you want? I’m getting dressed.” When I reached the door, I could see that she was just then starting to get dressed. She wanted me to leave, and I did. At 1:50, she finally came into the kitchen ready to go. That was almost two hours from the time I first went outside to prompt her to come in. She was quite cheerful at this point. We went to lunch and all was well.

The final part of our day was easy. She loves Scott; so just being with him from around 3:30 until we went to bed at 10:45 was a special treat for her. We went to dinner at one of our favorite restaurants and chatted at length about many things. The day turned out to be as special as I had hoped.

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Looking Forward to a Good Day

It is a beautiful day in Knoxville today. In fact, we have had a string of beautiful days. That has meant Kate is spending a little more time in the yard. I try to let her stay out as long as she cares to. Sometimes, especially late in the afternoon, I feel the need to encourage her to come inside as I did yesterday when we were supposed to pick up friends to go to dinner at Casa Bella where they had a special night of music the songs of Peter, Paul and Mary as well as Simon and Garfunkel. This was a one-time replacement for Broadway Night that occurs the third and fourth Thursdays of each month. They have been doing this for the past 16 months. Kate and I have made almost every program as well as Opera Thursday which is the first Thursday of each month. This is something we both enjoy. I believe it is especially beneficial for Kate. It is not only a time to enjoy the music; it is also a social occasion. Many of the people who attend are regulars like us. Last night was a special treat for Kae as she is very fond of the couple who went with us. She loved the evening. That, of course, makes me happy.

Yesterday there were a couple of things to note about Kate’s behavior. Early in the day as she was getting dressed, I went to her room to get an idea of how long it would be before leaving for Panera. When I entered the room, she picked up a small painting or print that we had gotten on a trip some time ago. She asked, “Where did I tell you I wanted to hang this?” We had not had a conversation about this at all. I said, “I don’t remember your telling me.” She looked mildly disgruntled and tossed he picture on her bed where it had been. From past experience I knew not to pursue the subject any further.

The second thing occurred as we were getting ready for the dinner last night. She said something like, “They really have the time down on the deodorant.” I was puzzled but didn’t say anything. She came out of the bathroom and said, “It works. You just hold your arms up like this for 10 minutes (seconds, I assume).” She went on to say more that I didn’t understand. At first it sounded like you didn’t need to use deodorant if you just washed under your arms and then held them up for a short time. She said something else that made me think holding up one’s arms let the deodorant dry made it work more effectively.” I told her I didn’t know that. She then said, “You told me that it made sense.” When I told her I didn’t remember talking about this, she was irritated and said, “Let’s not talk about it.”

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Panera – Like Another Home

Kate is getting so accustomed to coming to Panera that she sometimes just gets dressed, puts her iPad under her arm, and comes to me in the kitchen (my office) all ready to go. She did just that this morning. She doesn’t say a word. She just stops. I see that she is ready, and off we go.. Today I wasn’t quite ready; so I quickly dressed. I think it is a good routine for both of us. It gives us a change of scenery, and we often see people we know and talk with. This morning, for example, a gentleman whom I had seen but didn’t recognize came over to me reminded me of his name and that we had worked together in connection with one of the local arts association. He asked me if I were serving on any boards. I told him I was slowing down now but was concentrating my attention on the foundation.

Shortly thereafter, another man approached me and spoke. He is a former police chief of Knoxville. I had recognized him several months ago and have seen him here a few times subsequently. He is now a pastor. I told him I always wanted to call him Chief but I thought I should change now to Pastor. He told me to just call him by his first name. I introduced him to my wife and we had a very brief chat. These kinds of experiences are good for both of us and help make it a nice day.

Speaking of nice days, we continue to have them. Today we are going to see Robert Devereux which is this week’s Life in HD at The Met performance. We will go to lunch near the theater and then walk over for the opera. This will be a new opera for us. I hope it is one we both enjoy.

Yesterday after lunch Kate worked in the yard a little. We went out for pizza for dinner. We go there often enough that we know the various waitresses which makes us feel at home. This is true for most of the other restaurants at which we eat. Eating out has become a social experience.

After dinner, we came home and watched another episode of “Grantchester,” a Masterpiece Theater production. It was a bit confusing. I’m not sure Kate got much out of it, but she stayed with it through to the end. We started watching another show, “Father Brown,” but she didn’t last. Nonetheless, we enjoyed watching together, something we don’t do a lot of.