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Thinking About the Future

Since Kate’s diagnosis 6 years and 4 months ago, I have contemplated the future and what life would be like. At that point, I never imagined that we would be able to do and enjoy life so much. Today I am beginning to see more clearly that time when we won’t be able to do so much. In fact, that time is really upon us.

The first time I can recollect feeling that way was on our Caribbean cruise in January 2016. I had signed up for that cruise as a test to see how Kate would do before committing to a longer Mediterranean cruise in May of that year. I discovered that Kate did not seem to enjoy the cruise. As I recall, she didn’t attend but one night of the entertainment after dinner. That is something she has always enjoyed in the past. I think she also found it challenging to be with different people at dinner each night. Fortunately, she continued to get along well once we were home. I cancelled the Mediterranean cruise reservations.

Over the past six months or so, I have noticed, and expressed in this journal, that she seems to be getting less pleasure from movies than she did in the past. There have been notable exceptions. For example, she loved Hidden Figures that was about the team of African American women mathematicians working in the US space program. More recently, she has been getting less out of other types of performances. I was really disappointed when we had to walk out of Der Rosenkavalier starring Rene Fleming this past Saturday and another local theater performance a day later.

We are in Asheville to celebrate our 54th anniversary. I have kept our schedule to a minimum. We’ve only had tickets to one event each of the three days we are here. As I mentioned earlier, we ended up not attending a concert yesterday. It turns out that we have spent our time mostly in the hotel and eating several nice meals. Even that has been rewarding for me. I think it is clearly less rewarding for Kate. I have the feeling that she would be happier at home where she could work in the yard in addition to her iPad.

At this moment, she seems contented. About 15 minutes ago, she was getting tired of sitting in the lobby after breakfast working on her iPad. I asked if she would like to go back to the room. She said she would. As we approached the room, we saw that the maids were about to go in and clean up. We told them to go ahead. We came back to the lobby where we are sitting on a sofa. It is rather comfortable. We have reservations for lunch at 11:30. Following lunch, we are attending a chamber concert. Then we will come back to the hotel to pass more time before dinner this evening at a restaurant that is very near the hotel.

We leave for home in the morning. I would like to have lunch first and then go home. We’ll see what happens. It probably depends on how early Kate is up as well as how eager she is to be home. The last time we were here (September), we ended up going home after breakfast and eating lunch in Knoxville. I suspect that is what we will do this time.

We leave for Texas on Saturday. I hope that the travel this week does not cause added confusion while we are there.

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In Asheville

This year I have planned an unusually leisurely few days while in Asheville. A year ago, I had done somewhat the same. At that time I was not expecting to be here this year. We are fortunate this has worked out. I have great difficulty imagining, however, that we will return next year. As I have noted in other posts, I believe she is feeling further detached from all that is going on around her. That makes the total experience for both of us less rewarding than it has been in the past. On the other hand, we are able to enjoy meals out and catch a few performances. I enjoyed Waiting for Godot yesterday. Although Kate did not feel the same way (She said, ”This was not my kind of play.”), she never seemed bored as she sometimes does; so I feel it worked out.

This morning I noticed that the door to our room was not fully closed. It appeared that she had tried to open the door and was stopped by the security latch that I had engaged last night. One of the things that scares me a bit is the possibility of her leaving the room at night without my hearing her. I don’t believe she can operate the security latch. At the same time, I never know; so traveling like this has a few extra stressful times.

We are both enjoying being back at the Haywood Park Hotel. As we walked up to the front desk, the woman on duty recognized us and greeted us by name.

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Thoughts in the night

Kate and I are in Asheville at the Haywood Park Hotel where we are celebrating our 54th anniversary . We drove in yesterday about 11:30 and had a nice lunch. Then we came back to the room for a couple of hours before taking a stroll around the downtown area where we visited a couple of bookstores.

It is 3:00 a.m. I woke up almost 45 minutes ago and haven’t been able to go back to sleep. I had forgotten to leave a light on before going to bed last night. I got up and turned the light on in the bathroom. That gave me quite a jolt imagining how Kate would have felt if she had waked up in a strange dark room.

It’s not that there have been any dramatic changes in her condition, but she continues to decline little by little. She has displayed more signs of confusion lately. Each time she does something unusual it reminds me that even I begin to believe she is doing better than she is.

This is not the first time that I have waked up in the middle of the night and let my thoughts wander thinking about her and how we will handle the future. I have something of a panicked feeling thinking about leaving her alone when I go to various meetings. I really need to make contact with an in-home service soon. I still plan to utilize the services of our housekeeper at the start. Recently I asked her to come on a Monday when I had a Rotary meeting. She has two Mondays a month when she could do this for me. That is the only regular meeting that I feel I must continue. I can skirt around the others for church, United Way, and the foundation.

I am going to stop now. I will continue my thoughts tomorrow. Right now I want to try to get some sleep.

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Christmas Eve in Memphis

Yesterday Kate and I drove up to Memphis to spend Christmas with our daughter and her family. We came in late in the afternoon and just about an hour before going out to dinner. Following that we returned home where we watched The Grinch that Stole Christmas and a portion of Disney’s version of A Christmas Carol. It was a nice evening

Today has been leisurely for Kate and me. Although we both woke up around 5:00, we went back to sleep, and I didn’t get up until almost 7:30. Kate remained in bed an hour or so longer

Jesse worked on the preparation of a cheesecake for our dessert tomorrow and a shrimp salad she was preparing for a drop-in at her neighbor’s across the street. We all went to lunch at the old train station there. It was a delightful ride over and back with a lunch that was quite good.

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From Asheville

Shortly after my previous post, Kate came into the kitchen dressed in the same clothes she had worn yesterday and slept in last night. I told her that I planned for us to go to Panera at 9:00 to get her a muffin and from there to Asheville. She went to the back of the house. I thought she had gone to get ready. About 8:40, I went back to check on her and found her in the bed in our bedroom working on her iPad. I reminded her we were leaving. She got up. I had already gotten some slacks out for her to wear. I gave her a couple of options on a top. Then we went to Panera. She seemed in a good humor though she didn’t talk very much. We spoke very little in the car on the way here. We went to lunch at The Blackbird, and we both had good meals. She seemed to perk up.

We had not been able to get into a room before lunch. It wasn’t too long after lunch that one was available. She is happy and resting in the bed right now as I work on my iPad. I am looking forward to a good dinner tonight and a good performance of A Chorus Line.

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Home Again

We arrived home around 10:00 last night. Although we had had a wonderful time at Chautauqua, it was good to be back in our own quarters again. It is only when you are away from home for a while that you realize how accustomed you have become to all the little things that you like about home. For me, that involves something as insignificant as the soap we use in the shower. Of course, the amount of space we have at home is so much greater than anything we have ever had at Chautauqua. We definitely don’t go there for the lodging even though this year’s apartment was the very best we have ever had there.

When we came inside I didn’t pay any attention to Kate. I was focused on getting the luggage inside. When I finished, I noticed that she was walking slowly around the house. I asked, “Are you glad to be home?” She said something like, “What’s going on? Are we going to stay here?” I asked her if she thought something was wrong. She said, “No, I don’t know what I was thinking.” I don’t know either. I have to believe she remembered that this is our home. We had just been talking about going home. All I can say is that she does have periodic moments when she finds things confusing. This was one of them.

It was almost midnight before I got into bed. She had been working puzzles on her iPad in bed until about 10 minutes before I joined her. That is much later than we normally get to bed. This morning she was very tired. She got up around 8:30 and ate some yogurt. A short time later she went back to bed. I got her up close to 11:00 for lunch. When we came home, she worked on her iPad for a while. She is now in bed again. I am going to the store soon and will let her sleep. I suspect she will get up before time for dinner and hope that she is able to get to sleep earlier this evening.

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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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An Emotional Morning

Both the morning worship service and the morning lecture were emotional for both of us. Father Boyle, our preacher of the week, is a story teller. His sermons are filled with various stories from his work with gangs in LA. Each one is used to reinforce a point. This morning’s sermon topic dealt with living in the moment. He made great use of the word “now” in his message. The message and the stories touched me deeply in that I know this is our last stay at Chautauqua and also that we have been living in the moment (at least trying to) since Kate’s diagnosis. I had tears in my eyes most of the time he was speaking. I don’t know that Kate shed any tears, but she was touched as well. Her expressions were audible ones. Those have become quite common over the past few years

I never thought the lecture itself would be an emotional experience. Perhaps I should have expected it since I knew that music was involved. The first thing that brought tears was Jane Pauley’s singing of “The Way We Were.” When she appeared on stage on Monday, Roger had said she was going to sing today, but she denied it. Apparently, she was having second thoughts knowing that the audience would no doubt have some talented musicians among them. The lyrics were written by Marilyn and Alan Bergman. She was ill and couldn’t be there, but her husband was a delightful person, and their relationship was itself a touching story. He sang parts of a number of their songs and explained how they came to be. The last portion of the “lecture” Bergman sat on a stool beside the piano and sang to of his songs. The last one was one that he and his wife and written for each other. When it ended, even the moderator said that was a fitting end and did not ask for Q&A, a unique occurrence indeed. I noticed a man to my right on the row in front of him wiping his eyes. The woman next to me saw me wiping my eyes. The man directly in front of her had turned around and noticed my tears. I then told the woman next to me that I was especially emotional because my wife has Alzheimer’s and this is our last trip to Chautauqua. She told me her husband died of Alzheimer’s. She wished me well. I gave her a hug. Then Kate and I reflected on the beautiful morning we had had.

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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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Reminding Me of our Caribbean Cruise

Yesterday was a very good beginning of our week with Roger Rosenblatt and Friends. Kate seemed to enjoy every program we attended. I am, however, observing some signs that remind me of her behavior while on the cruise. She seems to be unusually tired, and last night, she did not go with me to the evening entertainment in the amphitheater. She got up about 30 minutes ago and took a shower but got back into the bed. I had laid out clothes for her, but I discovered that she had gone through her drawers and pulled out other ones. She doesn’t seem to be approaching the day with any enthusiasm or eagerness

I feel a little torn in that I believe she will enjoy herself if she goes with me to events, but I don’t like to force her. I am strongly encouraging her to attend the morning worship. The preacher of the week is Greg Boyle, a catholic priest who works with gangs in Los Angeles. He is an excellent speaker

(8:53 a.m.)

Good news. She got up and dressed and came out on the porch with me to eat the muffin had had gotten for her. She was in good humor and appeared rested. We are going to the morning worship.