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Confusion

For the third night in a row, Kate has not known where we are. We were at dinner at the Brick Walk Cafe. Kate was facing where she could see Bestor Plaza and all the people outside. I said, “I guess tonight you know where we are.” She hesitantly said, “At home?” I told her we were at Chautauqua. She was pleased. She obviously hadn’t remembered our being here. Memory problems are so interesting. She clearly remembers Chautauqua. The mention of the name brings out good thoughts, but she is unable to recognize that we right here on the grounds.

This fits with my suspicion that while we were in Lubbock in June, she never remembered where we were. Knowing this makes me wonder whether or not we should make any further travel plans. If she were showing signs of distress, I would clearly not consider traveling. As it is, she does have moments of pleasure every place we go. Much of the time she doesn’t express a lot of enthusiasm, but it comes out periodically. She liked the morning speaker. She didn’t say anything about the afternoon speaker. That was one that I didn’t enjoy myself.

The only other trip that is in my planning right now is the trip to Fort Worth for homecoming. That is around October 19. There are two reasons that I would like to make the trip. The first is that I expect that this will be her last trip home. Second, it will be her only opportunity to see a grandchild at TCU. Our oldest will be a freshman in September. Kevin and his family as well as Kate’s brother and his wife are also planning to be there. It just seems like an important trip to make. At the moment, I have hotel reservations but haven’t done anything else to prepare for the trip. I’ll wait another month to make a go or no go decision. Even then I will be prepared to cancel if necessary.

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More Signs of Decline

I am seeing little signs of just how far along Kate is. This morning after her shower, she came into the living room of our apartment and said, “I’m ready.” I asked what she was ready for. She said, “To go home.” I got up, put my arms around at her and told her this was our first day at Chautauqua and that we had a week to go.

She had said something like this yesterday, and I told her we were here. I know that last night and tonight at dinner, she asked, “Where are we now?” Last night, I asked her what she meant, in this place (meaning the restaurant, or . . .” She stopped me. I told her we were at Chautauqua. She said, “I know that.” I believe she really didn’t know that.

Tonight she asked the identical question. I told her Chautauqua. She smiled and said, “We are?”

I don’t know that I said this earlier, but when I found her this afternoon, she was quite calm and seemed to have enjoyed being with the man she was talking with.

She enjoyed the morning lecture and got along fine at the 2:00 lecture even though we were in an overflow room where there was only audio.

All-in-all she has had moments of pleasure and others where she seems tired and unenthusiastic about being here. The latter reaction reinforces my thought that this will be our last year.

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Lost Yet Again at Chautauqua

This is a post I would rather not write. I am driven to do so by the possibility someone out there might have the mistaken idea that I am caring for Kate perfectly. I left Kate at the apartment this afternoon for about an hour and a half. When I returned, she was gone.

I wouldn’t have done this at all if I hadn’t gotten her out of bed this morning at 10:30 to get to the morning lecture at 10:45. That was followed by lunch, a quick stop by the apartment to brush teeth, and on to a 2:00 lecture with Bill Moyers. Before coming this year, there were two speakers I definitely wanted to hear. One is Alan Cooperman who heads the division of research on religion at Pew Research. I have read so many of his study findings and wanted to hear his presentation.

Knowing that Kate would want to have a break, I brought her back to the apartment. She said she was going to rest a while. I told her I didn’t want her to go anywhere. She said, “Oh, I wouldn’t go anywhere.” Of course, I knew she couldn’t remember.

When I returned and found her gone, I was panicked. It was daylight, and it is a safe place. On the other hand, it was beginning to rain. I knew she hadn’t taken an umbrella or rain jacket. The first thing I did was to walk across the street to the Brick Walk Cafe to see if she might be there. Then I walked around the Plaza and went into the book store. I came back to the apartment and checked again. I saw the neighbor in the apartment next to us and told her to be on the look out. I left to retrace my steps and still did not find her. I decided to contact security. I did so by going to the visitors’ center. They called security for me. I gave them a description of her. Then I went to the market here on the plaza and bought some gauze and hydrogen peroxide to clean up several cuts to my arm. I had taken a fall on the way back from the 3:30 lecture. There I told the people about Kate. I also told a driver of one of the small buses that circulate the area to be on alert for her. I told people at a dress shop in St. Elmo about her as well. On the way back to the apartment I saw a young man, Kyle, who was driving a golf cart and stopped him. It turned out he was with security and was out looking for her. As I was talking to him, I got a call from a man who said she was with him on Robert Street. I thought he was with security, but it turned out that he was with the Ecumenical House that is around the corner from our apartment. She apparently wandered over there. I will have to find out how he got my phone number and to thank him.

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Forgetting

Kate was slow getting going yesterday but perked up during the church service. She liked the preacher and got the feeling of being back in Chautauqua. We had a nice afternoon. After dinner, I took her on a short walk around Bestor Plaza before going back to the apartment.

For the second night in a row she skipped the evening program. It was the opera on Saturday and the sacred song service last night. In both cases, she had planned to go until after supper. At first, she started saying that she might not go. Then finally she said she would go if I really wanted her to go. I told her I wanted her to do what she really wanted.

Saturday night, she went to sleep quickly and was on the way to sleep before I left. Last night, she went to bed, but when I got home she was still awake

This morning she was up around 7:45 and took her shower. As I did yesterday, I laid out her clothes for her. A few minutes after 7:00, I had gone out to get her a muffin and orange juice. After she finished both, she went to the bathroom to brush her teeth. In a few minutes, she came into the living room with her toothbrush and toothpaste in hand and said, “I’m ready.” I said, “Ready for what?” She said, “To go home.” I got up from the sofa and gave her a hug and said, “This is our first day here. We have a whole week ahead.” She said, “Where are we?” I told her and said I should have reminded her. She nodded and said, “I’m just sleepy.”

This is just another of her poor memory AND mine. I should never have referred to being here without specifying where “here” is. I know she can’t remember. Why can’t I remember that?

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Lack of Enthusiasm

It is a pleasant Sunday morning. We arrived at Chautauqua around 3:00 yesterday afternoon. I had planned for us to get away a little earlier and have lunch at the Italian Fisherman at Bemus Point on the lake. It turned out that Kate was very tired. She had gone to bed just before 10:00 the night before and didn’t wake up until 8:45. She showered, ate a muffin I had brought to her, and got back into bed. She remained there until I got her up at 11:50 since check out time was noon.

The chattiness (that is an overstatement) of the previous night was gone. She didn’t say much until we got here. After we got to the apartment, she rested until time for dinner. After dinner, we took a short walk around the area, and I pointed out several places where we had stayed before. She was enjoying herself for the first time that day. She commented on the beauty of the place and how nice it was to be here. We talked about how much Chautauqua had meant to both of us over the years.

Last night’s entertainment was a performance of the Respighi’s L’Orfeo. Kate had planned on going and seemed excited (another overstatement) about going. About 7:30, she asked me if it would be all right if she skipped the opera. I told her it would. She went to bed before 8:00. She got up about 8:30 this morning. I had gotten her a muffin and orange juice. She ate the muffin and drank most of the juice. She worked on her iPad for a few minutes. Then she went back to bed. She has seemed very tired and hasn’t wanted to talk or for me to talk.

We have the Sunday morning church service at 10:45 a.m. We have always attended this service and plan to do so this morning although she has expressed no special excitement about being here or attending the service. I hope that she will find herself getting in to the spirit of things once the service begins.

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Sleep Again

About an hour ago, Kate woke up and ate a muffin along with some juice I had brought up for her. Then she went back to sleep where she is still resting. I woke her up a couple of minutes ago and told her it was about time for us to leave. She asked that I give her a few more minutes. I plan to wake her in the next fifteen minutes, and we’ll be on our way to Chautauqua via Bemus Point and the Italian Fisherman.

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Very Good Night’s Sleep

It is now 10:30 a.m. Kate is sleeping soundly. She got in bed last night before 10:00 and went to sleep quickly. She did awaken when I got in bed closer to 11:00. She was up around around 8:45 and took a shower. After the shower, she returned to bed. I waited on her for a while so that we could both go down to breakfast at our hotel. She was sleeping so well that I finally went down to breakfast on my own. When I returned, she was dressed but back in bed asleep. Check out time is noon; so I am going to let her sleep a while longer.

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A Good Day (10:36 pm)

I am writing from our hotel room in Buffalo, NY. We have had a long but leisurely trip from Knoxville. Kate was up early this morning and ready for Panera at 7:30. I had been up since 5:18 and had a walk. I was then taking care of those things that have to be done at the last minute. She wasn’t dressed exactly the way I had intended. I told her I would like for her to change the pants she was wearing. She was quite agreeable,

As it turned out, it worked out well that she was ready so early. That enabled us to get to Panera early and relax before leaving for the airport about 9:50. Our flight left on time. We had a planned layover of three hours in Atlanta. Our flight was delayed fifty minutes waiting on the incoming flight. That meant virtually four hours in the airport. We had nice lunch and then spent the balance of our time on our iPads.

When we arrived in Buffalo, we came directly to the hotel and checked into our room. We got a recommendation of a place to eat from a man at the front desk. We ate at Bravo Cucina. It was a good meal but not great. What made the whole thing special was that Kate was more talkative than I have seen her in a while. She talked about mostly about our marriage. She spoke about how fortunate we have been and how we recognized our good fortune. She also talked about the travel we had done and what a wide variety of travel experiences we had had. She said she was tired and would go right to bed when we got back to the hotel. She was right about that. She is sound asleep right now.

Tomorrow morning we will take it easy. I intend for us to have a light breakfast either here at the hotel or at a Starbucks that is across the parking lot. We are planning to stop for lunch at the Italian Fisherman at Bemus Point on Chautauqua Lake. We have done this each of the past four or five times we have come to Chautauqua.

Kate said several times that we are off to a good start on this trip to Chautauqua. I couldn’t agree more. I hope the balance of the trip goes as well.

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Email to Jesse and Kevin

Dear Jesse and Kevin,

I am so glad we were all able to be together for Brian’s graduation. I appreciate the efforts of each of you to make this a special occasion. A year ago, I would not have expected that Mom and I would have been able to make it. I am grateful that I was wrong.

That said, I am sure that both of you could see that life is different for her now. The change is even more dramatic than at the time Kevin and Taylor were here in March. We are now entering the first chapter of what is the portion of this journey that most of us think of when we hear the word Alzheimer’s. Up until now, we have been able to lead what appears to outsiders as a normal lifestyle. (It has been far from normal for us.) We have been very active and have enjoyed ourselves. Mom is now deriving less and less pleasure from things that in the past have provided her a great deal of pleasure and satisfaction. As you know, this doesn’t get better.

Our travel over the past ten days has been hard on her. It has led to her being very tired and confused. I have heard others talk about the challenges of travel, but up until now, those issues have been mostly the burden on me. The burden is now shifting to her without any relief on me. Kevin, I really hated to leave the swim meet the other night, but I was really feeling for Mom. She is very sensitive to the heat. More importantly, she does not know what is going on around her. Not that it would have made any difference but, she wasn’t able to see any of the races themselves. I felt bad that I hadn’t brought her iPad to the meet. She would have been able to entertain herself in that way. Neither did I have it for her at the graduation. Speaking of which, as we left the graduation the other day, Mom said, “Tell me again why we were here for this thing.” She hadn’t realized at all that she had been to Brian’s graduation. I am equally sure that she didn’t even know that it was a graduation.

While we were there, she never completely realized that she was in Lubbock. As we approached our landing on Saturday, I said we’re coming in 25 minutes early. She asked me where we were coming into. When we landed in Knoxville last night, I said, “Well we’re here.” She said, “Where?” I told her Knoxville. She said, “Where we just left?” I told her that was Atlanta.

On the way home, we went to Chalupas for dinner. After we got home, she worked outside for about 30 minutes. This morning that was the first thing she wanted to do. Usually we go to Panera first. She was outside about an hour after which she came in and showered. Then we went to Panera and to lunch. Since our return from lunch, she has been outside. This is one thing that she will be able to continue doing for a while longer. I am thankful for that. She is having more trouble with the iPad. She keeps hitting buttons that take her out of her puzzle, mostly for offers to buy other puzzles. Then she doesn’t know what to do to get back. Though I encourage her to ask me to help her get back to her puzzles, she thinks she is bothering me. When she can no longer use her iPad, she will have lost half of what entertains her now. I hate for that day to come.

Looking ahead, I am still planning to make our trip to Chautauqua in July. That is four weeks from tomorrow. While I don’t think this year’s stay will be like those in the past, I think she will feel comfortable being on the grounds. I think I told you that we bought a bench for the amphitheater that is being reconstructed for this year’s session. Unfortunately, it looks like the benches won’t be ready. That was one of my primary motivations for going this year so that Mom could see where our bench is located. Of course, I need to keep in mind that at this point, things like this don’t mean anything to her. It’s really for me.

The next planned trip is to attend the TCU homecoming in October. I am not at all sure that will happen. It all depends on how Mom is doing. At this point, I don’t think we will make it. If that trip is not possible, that means that the trip to Lubbock for Christmas will be out as well.

As I close, I want to reiterate what you have heard me say so often before, Mom and I have been very fortunate that her decline has been so slow and without any special complications. I continue to treasure not only the memories of our whole marriage but also those since her diagnosis January 21, 2011. One of the few things she said about our trip was how proud she was of both of you and your families. To me, that alone was worth the trip. I know that even now she doesn’t remember the details of the trip or, possibly, that we even took the trip, but the feeling she has for the two of you remains. That’s another thing for which I am grateful.

Love,

Dad

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Travel Report

At the moment, Kate and I are sitting in a booth at Panera in Lubbock. We just came from I Fly where Kevin, Rachel, and their three children and I flew in their simulated sky diving experience. It was fun to do. Kate did not participate. She watched from outside the glass-enclosure where we “flew.” She went with us to the required training session before hand. She told the instructor that she had done it before. Of course, she hadn’t. It is just one of the many things she can get confused about.

Before our flights, we had gone to lunch where Kate had a turkey sandwich and a cookie. After we finished at I Fly, she said she was hungry; so I thought this would be a good place to pass some time.

We are meeting Kevin at his house at 4:30. From there we are going to the grandchildren’s swim meet. Last year about this same time, we attended a similar meet.

This trip has caused me to reflect a little more about Kate and her ability to travel. A year ago, I wasn’t sure that we would be able to come back to Lubbock at all. Neither did I believe we would make it back to Chautauqua. We are leaving for there in four weeks. I also have tentative arrangements for us to visit Fort Worth for homecoming in October. I am confident about our making the Chautauqua trip but less confident about the homecoming trip.

I think this trip has been hard on Kate. As I have noted a number of times before, I can’t imagine how she must feel not remembering so many people and not being able to remember any of the short-term things that are happening all around her. She was very tired last night when we finally got home from dinner around 9:30. She slept well and got up around 8:00. After breakfast, we went back to our room where she immediately got into bed. She remained there until 11:00. She seemed pretty tired since then although I don’t see any signs of that right now. She is working contentedly on her iPad.

While I have been checking email and responding, she has had several frustrating moments when she has hit a key that takes here out of her puzzle. One of those is the “Home” key that takes her to Siri. The other is a button that gives her the option to buy more puzzles. These are not new occurrences. They happen occasionally all the time. I just fear that they are a signal that she is on the way to losing her ability to do one of the things that occupies her the most. It is the iPad and her yard from which she derives the greatest pleasure. I hate to see her lose these two with nothing left to replace them.

It would not be surprising then that I am feeling a sense of sadness and a bit of anxiety about the future. For the first time, I am really facing Alzheimer’s in the way that people imagine. It is not coming as a surprise. It is just that the reality is more dramatic than the knowledge that it will be here one day.