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From Chautauqua

Yesterday we arrived at Chautauqua (Chautauqua) after two nights in Niagara-on-the-Lake. For several years we have gone there before going to Chautauqua. From April through October they have the Shaw Festival that we both enjoy. They have a theater company that performs as many as 8-10 plays either by George Bernard Shaw or ones that are similar to his. We packed in a lot, seeing four plays in two days. They were all terrific. We love live theater, it was another of the very special times we continue to have.

I continue to notice ways in which I need to take more responsibility. Kate came without any comfortable shoes and left some shoes, a jacket, a pair of slacks, and a few other things At our B&B. I notice a conflict between my wanting to take more responsibility and Kate’s wanting to feel independent. There are some things she appreciates – my taking care of, everything financial, some communications with friends, making arrangements for dinner and entertainment. There are also times she feels insulted by my efforts to help. Yesterday I showed her where the bookstore is and told her I would meet her there. She gave me a disgusted look and said she knew where the bookstore was. We have had a number of such things on the trip.

On the positive side, I still believe that we are fortunate that for everyday interaction with people that her long-term memory is still more than adequate for her to enjoy herself with others (most of the time) and to prevent their noticing that she has a memory problem. It is the short-term things that are most difficult for her. For example, we had a delightful conversation with two couples at our B&B in Niagara-on-the-Lake. A short time (perhaps, 2-3 hours) later she couldn’t remember them when I mentioned them to her. I explained, and she said she remembered. I know this is frustrating, even distressing, for her. She says little, but it shows in her face.

I have often been critical of those who say that the person with AD does not know what is happening. I have a different perspective on this issue. My experience with Kate has reinforced this opinion. Clearly Kate knows she has AD, and she can see signs of it everywhere. On the other hand, I see her transitioning to a rather innocent, even child-like, stage that I don’t think she recognizes. One indication is that she very frequently remarks how intelligent people are. It often seems like she says this about most people she encounters. Another is that she is forever wanting to arrange to get together with people that we have not gotten together with before. She will even suggest inviting them to our house when I know that she will not remember to follow up on that desire nor will she be able to organize things for the event should I extend the invitation for her.

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Great Family Time

Late Saturday night Kate and I returned from Jackson Hole, Wyoming, where we had rented a house to celebrate our 50th anniversary with our children and grandchildren. Everyone was able to be there which is a very rare event. In fact, this is the first time all of us have been together for a full week. I am glad to report that it went swimmingly well – at least from our standpoint. I also believe the others had a great time as well.

I thought that Kate got along well. I suspect that no one may have been suspicious about her Alzheimers. She is more withdrawn than she used to be and did not pretend to help in the kitchen which could have been a clue. I guess I will find out when the day finally comes that we make it known to them. It would not surprise me that when that happens they will have already been suspicious.

This has made me reflect once again on the timing of telling them. From Kate’s standpoint, she would just as soon never tell. They would simply come to realize it the way I did with my mother. On the other hand, I has meant that I have been able to take advantage of our time together. I wouldn’t give anything for this time. We have been very conscious and deliberate about making the most of our time. The interesting thing is that despite Kate’s own frustrations over having AD, she thinks she will have more time than I believe she will have.

By the way, she commented on how caring Jesse and Greg were during the week. She wondered if I might not have told them. I told her that I hadn’t said a word. I think they were responding to the nature of the hiking trails we were on. We all noticed that she is less stable. They also know that she is geographically challenged.

Kate was quite careful to ask me for help when she needed something. For example, she didn’t know where any of the kitchen utensils were kept; so when she fixed her cereal in the morning she needed help identifying the right drawer. She asked me discretely, and I don’t think anyone noticed.

One reason I don’t think people noticed is that no one has said anything to me. If they know, surely they would say something to me.

I will write more later when I have a moment. I want to comment on the grandchildren and the letters I had for her.

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Making Plans

The number of things that are an issue now make me uneasy about travel plans. We have wanted to go to New Zealand and to the Baltic States and Russia. I have been looking at Overseas Adventure Travel (OAT) for these trips ,  New Zealand in January or February 2014 and the another in the Fall 2014. I am beginning to think that another OAT trip may be too busy and require too much for me in terms of being ready to go for breakfast, for the bus, etc.

Kate’s functioning continues to deteriorate although I still think most people would never notice. Twice since coming back from our trip she has gotten lost. The first was on the way to church, a place to which she has driven since 1983. This past Friday she was later arriving home than I thought she should be. She had gone to Ellen’s to deliver some food for them. I decided she and Ellen were having a nice visit. When she came back, I asked about her being so late. She said she had gotten lost. She didn’t want to talk about it. This is a common pattern after she has done something frustrating. A little while after something has happened, I occasionally will ask, and she will tell me what happened though I don’t belabor things.

Short-term memory is increasingly a problem. For example, last night at the symphony concert I told her we would be going to a fund-raiser for the orchestra. At the end of the concert she spoke with someone who asked if we were coming, and she told them we were not. When I told her we were going, she didn’t remember my telling her the first time. This kind of thing happens all day long.

The “Fall” newsletter for the neighborhood association still isn’t out. On Friday she asked me to get her to finish it yesterday. I tried to get this done, but failed although she did work on it a little.

Similarly, she hasn’t finished her collage of pictures from our trip to South America although she was virtually finished weeks ago.

She continues to depend on me and actually hands off things to me. For example, the past two days she has handed me her can of V8 to open for her. Little things like this can be frustrating to her. She said that she didn’t want to break her nails.

All these things have made me more certain that our trip to New Zealand will be on our own.

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Reflections on our trip to South America

It has been almost 2 months since my last post. That is because of our recent trip to Peru (Lima, Cusco, and Machu Picchu) and Ecuador (Quito, the Amazon, and the Galapagos). Before the trip we were busy getting ready. We were gone 3 weeks and a day. Since our return, we have spent a lot of time getting back to normal living. Our pictures are mostly organized.

On the whole, the trip went very well – better than I might have predicted. I am, of course, talking about Kate’s AD. I did, however, find it challenging. We were on a fast-paced schedule that required getting up early, meeting the group on time, and hiking on unlevel surfaces. I had to keep my eye on her and hold her hand a lot. In addition, I not only had to get myself ready, I also had to make sure she got ready and had the things she needed. I didn’t always succeed in this endeavor. In particular, I should have taken greater control over the packing of her bag. She left without some of the basics like sufficient underwear and slacks. She ended up wearing some of my underwear, jeans, and a pair of nylon pants I had gotten for our trip to Jackson Hole in June.

I found it especially difficult traveling with Kate in a group. She has never had a good sense of time, but now she is almost completely devoid of any sense of time. The reason this was especially frustrating on the trip was the many appointed times the group was to meet. This meant that I had to make sure she was ready. Beyond that there were lots of other challenges like getting her wet suit on and off, getting her flippers on, helping her with snorkeling. Ultimately, she gave up on snorkeling, and I went by myself or stayed behind with her. I must admit that this was not our best snorkeling experience. The waves stirred up the sand, and we were never in truly clear water.

Since being back at home, she has had her own frustrations. She has been working a collage of pictures to share with our group of travelers. It is something she should have finished in a week, but she still hasn’t got it done even though several times she has indicated that she is practically finished.

A few moments ago, she told me, “I am losing it.” We hugged each other quietly for a few moments. Then she said, “Well, let’s move on.” She doesn’t want to dwell on her decline, but I know she worries more and more. As I have said in the past, I don’t believe there are many people who would ever suspect she has AD. That is because most encounters with people are periodic and involve a set of programmed comments. We ask, “How are you?” We answer, “Fine.” “What have you been doing?” “We just got back from a fantastic trip to South America.” And so on.

Yesterday Kate had lunch with  Ellen. As Kate’s closest friend in town, Ellen should suspect, but I doubt that she does. The ones who most likely to have suspected something are her hair dresser who has been aware of the confusion Kate has had about appointments and has missed a number. She has another church friend who mentioned something to our pastor almost a year ago. Beyond these people I doubt that anyone else would know.

Last week I noticed that she seemed to be a little depressed. One evening as we were talking on the patio, I told her I knew that she had had a frustrating week. She acknowledged that it had been a bad week. We didn’t go any further.

On the whole, Kate is still doing well. Her decline is very gradual, but she is definitely declining. What I notice is that she is much more likely to turn things over to me. She is even turning over selection of restaurants to me. In the past, I have usually asked her where she would like to eat and given her several choices. She would pick one, and we would go there. Now when I do that, she says, “You pick.” It is as though she just doesn’t want to be bothered with making a decision.

She also has many computer problems and needs to ask for my help. She is especially bothered when I am with my dad. She likes me to be around. Most of all she recognizes that she is less able to do everyday things. She is to fix sweets for next Monday night’s music club, and I am concerned about her getting this done and done right. This used to be her strong suit, but now she is not used to cooking. When she tries, the process is too confusing. She gets mixed up, and things don’t turn out.

We continue to be blessed. We continue to enjoy being together. We are even talking about making a trip to New Zealand or Russia or both next year. At the same time, everything I plan for the future involves some guestimate of what her condition will be like at that time.

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Traveling in Peru and Ecuador

Kate and I have typically traveled on our own. The major exception was our trip to Tanzania. We are now at the end of a trip to South America (Peru, Manchu Pichu, the Amazon, Ecuador and the Galápagos Islands). Here are a couple of observations.

Traveling with a group requires a schedule. Overseas Adventure Travel (OAT) clearly understands this. This meant each of our days has been planned, and we are all expected to comply. That has been a challenge for Kate. She can’t remember the schedule at all and depends solely on me to get her places on time.  Since she is not naturally punctual, this has been something of a problem.

The biggest problem for me is getting ready for everything. She never wants to get packed before going to bed. That means getting up earlier than I want and being rushed to be on time for our departure. We have had numerous early departures. Tomorrow we leave hotel at 5:30. When I suggested getting back to the hotel to prepare packing for tomorrow, she didn’t want to do it. This has been a pattern throughout the trip.

The trip, by the way, has been fantastic, but I don’t plan to make any more group trips, possibly fewer international trips if at all.

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Special Moments Followed by Melancholy

A week ago this past Friday we went to a 5:30 movie (Anna Jesseina) and then to Casa Bella dinner. Everything was perfect. We got our usual dinner, splitting a Veal Piccata, a bottle of wine and white chocolate cheese cake for dessert. Every part of the meal was great as well as our conversation. All of this is to say that we continue to have many special moments – I suspect more than most couples.

For some reason the next day I was feeling kind of melancholy. In the car I listened to music that has been special to us. That would include a song from the movie, Same Time Next Year and another from the television series, ”Family Ties.” It was hard to keep my mind off of the fact that the special times we have together are limited and grow fewer each day. Mind you, it wasn’t that Kate did something to remind me of this; it was simply the joy of good times together that made me think of the limited time we have.

This past week we went to Lubbock to be with Kevin’s family for Christmas. This was a special time. During the trip there were reminders of Kate’s decline in memory. For example, she indicated she wanted to go to the Astrodome. I decided that the easiest way to work that into our schedule would be for us to do it on Friday morning, the day we were leaving. Each day, however, she would ask about going to the Astrodome, and I would tell her we would do it on Friday. On Thursday night, we said our good-byes to Kevin and his family after dinner at the Macaroni Grill. It was clear that the reason for doing so was that we would not see them the next morning. When she got up Friday morning, she worked on the computer for a while, and I mentioned that we would want to leave on the early side to get to the Astrodome. She took her shower, dressed, and got ready to leave; however, she hadn’t packed her things. When I mentioned this, she asked if we were leaving today. I told her yes; so despite numerous mentions of when we were returning and her writing it on her calendar, she still did not remember that this is the day we were to return.

Looking on the bright side once again, it is good that it is the short-term memories that are the biggest problem because most of our functioning depends on longer-term memory. This would not be true if she were in a position of responsibility either as a volunteer at the library or if she were still working in the school system. I am even beginning to be concerned about some of her volunteer work with PEO and our neighborhood association.

Another interesting side-effect of her Alzheimer’s is that she looks more kindly on most people. She is more complimentary of me than at any point in our marriage. She often talks about how bright I am. She says similar things about other people. I think this is because so many things are difficult for her that she is impressed when she sees others doing what she cannot do.

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Some Positive and Negative Aspects of AD

Last night we returned from Fort Worth where we attended the 50th reunion of our 1962 graduating class at TCU.  We had a wonderful time. Clearly time had not erased the connections we had with our good friends from those days. For Kate the really good thing was that this kind of situation relies on long-term memory which, for her, is still good. That meant she was able to comfortably converse with people and enjoy them.

This made me stop and think how fortunate it is that it is the short-term memory that goes first because much of our interaction with people depends more heavily on our long-term memory. Before going, Nancy Hardwick (a childhood friend of Kate’s and also a friend at TCU) had sent us an email letting us know that Charlie, her husband (who was a former roommate of mine), was having memory problems and that we should always copy her on any emails to Charlie because he doesn’t remember things too well. As it turns out, if she had not mentioned this to us, we would never have known he had a problem.

These experiences underscore what I have mentioned a number of times before – the person with AD and his/her spouse recognize the condition long before others do. Although Kate got along beautifully as far as her relationship with the people with whom she interacted, I know that she had any number of experiences of forgetfulness that are painful to her. Her memory continues to worsen, and she recognizes it.

Not to take away from the stress for her, but it is also a challenge for me. Because she is so normal in most ways, I continue to respond to her in the same way that I have always done. For example, we had talked during the weekend about going to Sadie’s Cafe for breakfast on Monday morning before leaving. On Sunday night we talked about going there the next morning and returning to the hotel to finish packing. Right after she woke up on Monday morning, I told her I thought we might get ready to go to breakfast at 8:00 and the come back to the hotel to finish packing. I assumed that she remembered our plans for Sadie’s Cafe. When she was taking more time to finish packing, I said I thought we should go and reminded her that we were coming back to finish before leaving. She had forgotten that we were coming back to the room. She thought we were leaving for the airport in Dallas.

When we went downstairs, she walked in the direction of the hotel’s restaurant as I walked toward the door to go out to the car. She looked puzzled, and I reminded her that we were going to Sadie’s. She had completely forgotten.

When something like this happens, I recognize that I should know by now that she can’t remember. What I should do is assume that she won’t remember and say something tactful that gives her the information again without saying, “Remember, we are . . .” or responding after the fact, “I told you . . .” or “Don’t you remember?” All of these things hurt her self-confidence and bother her. I need to do a better job saying the right things instead of the wrong things.

During the weekend there were quite a number of incidents that she forgot about after my telling her something we would be doing at a particular time. She frequently asks me what day it is and then asks again later. This is one of the things she has in common with Dad.

The good thing is that I am the one who will see these things and not others. Hopefully, she will be able to hide her AD from the world for a while longer.

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Back from Chautauqua

Yesterday afternoon we arrived back home from Chautauqua. We had a terrific stay at The Spencer and have already reserved the same room for next summer. Kate got along well and enjoyed herself immensely.

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A Brief Overnight Trip to Nashville

Yesterday we went to Nashville to visit our friends, Ann and Jeff Davis. We had a nice lunch with them and then went back to their home for a visit. We had a good time, but as we left, Kate said she felt a little insecure with them. The Davises are both very smart. She felt it was difficult for her to join in on the conversation and felt a little left out. I was disappointed because Ann is someone Kate has always admired. At one time, the Davises had lived in Knoxville. I hope that our next visit with them is more successful.

Before meeting the Davises, we went to a mall in Franklin. As is our custom, we wanted to go our separate ways and set a time to meet at Belk’s. I waited for her about 15 minutes before calling her on her cell phone. It turned out that she was waiting at Sears. Today we went back to the mall and arranged to meet at same place. While I was waiting for her, she called to ask where to meet me. It can be difficult to coordinate with her.

 

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Forgetting Is A Problem

On way to airport this morning Kate realized she had lost her iPhone. I placed a call to her phone but did not get an answer. Shortly, I got a call back from a restaurant where we had eaten the day before. They had found it and will ship to her.

While at the Residence Inn, Kate and gone out to get something for breakfast. She forgot our room number and had to ask the person at the front desk who called me in the room. She did not seem to be disturbed and said she handled it well.