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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.

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More Short-Term Memory Issues in Texas

This afternoon we attended our grandson’s high school graduation. First, we all had lunch at a “Texas” kind of place. They specialize in hamburgers but have a variety of other items like Mexican food. We joked with Brian about calling attention to him during the meal. This is because he doesn’t like attention and doesn’t want to be recognized publicly as a graduate or for that matter any other time like on a birthday. Before we left, his parents had him put on his robe and go outside for a picture. Then we went to the graduation. As we were walking out, she said, “Why did we go to this thing?” She hadn’t remembered at all that we were there for the graduation.

Then on the way back home, I told her than we would go back to the hotel and relax for about an hour. Then we would have dinner. I told her we would not go back to Kevin’s after dinner. She said, “Kevin’s?” I said, “You don’t remember where we are, do you?” She said, “No.” Again, it makes me so sad when I am hit with this even when I know she doesn’t remember.

I am also wondering how much our trip to Asheville that was followed only two days later with this trip to Lubbock may have compounded her memory problems if at all. I wonder whether she will recover any during the time we are home before going to Chautauqua, only four weeks from this Saturday.

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Our Trip to Lubbock: Part 1

Getting ready for and traveling to Lubbock has provided me with additional information on Kate’s condition. It is amazing how much I can overlook until something special happens to alert me. In this case, I am specifically talking about Kate’s loss of short-term memory. This is a term I have used for a long time in this journal, perhaps several years. In each instance, I have used it to convey that she forgets things quickly. Looking back, I can see that the same words (short-term memory) do not communicate the same set of events. What I thought was short-term memory then I now think of us “medium-term” memory. Let me describe what short-term memory was like as we prepared for and left on this trip.

For months, I have been telling Kate that we would be going to Lubbock for our oldest grandson’s high school graduation. During the week or so before our departure this past Friday (today is Monday), I frequently reminded her that we would leave in one week (4 days, 1 day, etc.) for Lubbock. Usually I mentioned that we were going for Brian’s high school graduation. Sometimes I didn’t. In those cases, she would express surprise that we were going. Then I would remind her of the graduation.

Friday morning when she woke up, I reminded her that we were going to Lubbock for the graduation. Throughout the morning as we prepared to leave she forgot that we were going. As we walked from the car to the terminal in Knoxville, I said something about her being very trusting of me, that she probably didn’t know where we were going. I asked if she would like me to tell her. I did, and she expressed surprise.

A few minutes before we touched down in Lubbock, I told her that we were coming in 25 minutes ahead of schedule. She asked, “Tell me again where we are going?” I told her once again. For me, this was a dramatic example of her having essentially no short-term memory at all. I have heard other people talk about this, but this is the first time I have really understood how much memory she has lost.

Once here, she has been surprised that Jesse is also here although I have been telling her that as well.

Traveling itself presents its own problems. We arrived at the airport early enough to get a bite to eat before our noon flight. Kate stood beside and slightly behind me as we ordered our food. After I had paid, I turned to hand Kate her food and noticed that she was gone. I looked all around and couldn’t see her. I took our food to a nearby table and then started looking around the area. I decided that she must have gone to the restroom. As I was looking, the woman from whom I bought our food mentioned that she might be in the restroom. I told her I thought that might be the case, but that she has Alzheimer’s, and I was concerned that she would not be able to find her way back. I was very alarmed as we were in a small area; so she couldn’t go far unless she went completely back to the main terminal area. I told the woman what Kate was wearing. In a few minutes, the woman had found Kate wandering around.

This incident is just another reminder of how quickly she can get away. In the Atlanta airport, we almost had another one. We were waiting in line to give our boarding passes to the attendant at the gate before they started boarding. When the line started to move forward, I saw Kate turn around and walk away in the other direction. She had apparently gotten tired of standing in line and simply wanted to move around. The problem is that without any short-term memory, she won’t remember to come back or where to come back to. Fortunately, I was able to call her. She came back and all everything was fine.

I am beginning to feel less comfortable letting her go to restrooms. I am now reluctant to leave her alone while I go to the men’s room. This was not a problem on this trip. I did feel all right going to the restroom at Panera in Knoxville before leaving for the airport. Then I was able to go on the plane, something that she rarely does. We have two other planned trips, one to Chautauqua in July and the second to Fort Worth for our 55th TCU class reunion in October. I wonder how I will feel about traveling when the time comes.

Our first full day in Lubbock

We had a good first day in Lubbock yesterday. I slept until 6:30 which enabled me to get to the breakfast shortly after it opened at 7:00. This is the first time that I have brought breakfast back to the room instead of eating in the breakfast room. I just didn’t feel comfortable leaving her.

We are at breakfast on Monday morning. I told Kate that I had just received a text from Kevin. She said, “Kevin?” I said, “Are you surprised?” She said, “Well, yes.” I didn’t say anything more. I sent Kevin a text telling him where we are. He sent a reply, and I mentioned it to Kate. She said, “Where are we?” I told her Lubbock and that we are here for Brian’s high school graduation.

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54th Anniversary

Kate and I returned from Asheville in time for lunch. When we got home, she immediately asked if she could pull leaves and use the clippers. She didn’t even come inside. She was out as long as she often is. I would say about an hour and a half. She came in and took a shower. She then announced that she was ready to go. I asked her where she would like to go. She didn’t know. I asked if she would like to stay at home a while and work on her iPad. She said yes and went to the bedroom where she stayed about 30 minutes.

While she was in the bedroom, I took my laptop to her and played a video of pictures from our 54 years. I had posted it on Facebook. She loved seeing the pictures. She indicated she was tired and asked if she could rest. I told her she could. Then she promptly came into the family room with her iPad. Before working on it, she lay down a few minutes and then went back to the bedroom. Then she asked if she could go to the front yard. I told her that would be fine. She has been out there about 45 minutes. She is happy.

The trip to Asheville is a bonus. Last year at this time, I never expected to be back this year. It was a good trip although Kate didn’t express much enthusiasm for anything except a chamber concert yesterday afternoon. I was quite surprised and pleased by that. Kate did enjoy being at the Haywood Park Hotel. It was clear that she did not remember it at all. She took it all in as though it were the first time there

I was somewhat uneasy at night. I am aware that she got up during the night when I did not hear her. To the best of my knowledge, she did not try to leave the room except the first night. The security latch prevented her from leaving. I heard her and got up and brought her back to bed. Each morning when she got up, she looked quite confused. I suspect I may see more of that this weekend when we are in Lubbock.

I continue to believe Kate is going through a transition to a much deeper stage in her illness. Time, of course, will tell. I am still planning on our going to Chautauqua in July. That is only 5 weeks away. I imagine things will be quite different there. I fear that she won’t be as interested in attending the lectures session as she usually is. In fact, last year she didn’t attend most of the afternoon lectures. I went alone. I am not sure about doing that this year. I am getting much less comfortable about leaving her alone.

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Good News

After the past couple of days I was a little concerned about how Kate would respond to the Chamber concert today. As it turns out, she loved it. We had seats on the third row in the center of the orchestra. The artistic director is outstanding. His humor and enthusiasm bring a lot of life to something that many people consider a drag. What is even more surprising is that the first two pieces (out of a total of only three) the group played were contemporary pieces with all the characteristics that are implied by “contemporary.” If we had been listening on the radio, we would have quickly changed stations. As it was, we were both engaged. I think we were heavily influenced by the opening commentary about the pieces as well as being so close to the performers who were outstanding. It was truly an excellent performance.

An interesting sidelight is a story told by the percussionist. Among the instruments he played today was the vibraphone. He said that when the group had their first rehearsal last week, he was surprised at the sight of the vibraphone. When he examined it further, he discovered it was the very same instrument on which he took his first lesson on the vibraphone many years earlier.

Let me also take a moment to repeat something I have said before but seems like it is becoming a stronger habit, Kate’s asking my permission to do things. About thirty minutes ago, Kate asked me if she could close her eyes (that rest) for a few minutes. I told her that would be fine. Shortly thereafter, she got up and went to the bathroom to brush her teeth. When she returned to the room, she asked if she could use her iPad. As always, I told her that would be fine. I do realize that by telling her that it is all right may reinforce her emerging habit. I do, however, sometimes say they she doesn’t need my permission. In this case, I did tell her that I didn’t want her to think I want to control everything she does.