Posted on

Meltdown and Recovery

This morning we leave Niagara-on-the-Lake for Chautauqua after a very pleasant 2-day stay. Everything had gone beautifully until last evening as we were preparing to go to dinner and a play. Here’s the story.

First, we had a big breakfast at our B&B finishing close to 10:00. When we came back to the room, Kate got back in the bed to rest a little while. She got up for us to meet Ellen Seacrest and her sister-in-law, Ann, for lunch at 12:15. That meant we ate lunch before our stomachs were ready for more food. After lunch, we. Went to a play at 2:00. When we got out after 4:00, we got ice cream. Then we came back to the room for Kate to rest a while before our dinner reservations at 6:30. She was stuffed and didn’t feel like eating, but we needed to eat before the play at 8:00.

As she was trying to find something to wear, I got up from my chair and my phone fell on the wooden floor. The noise frightened her, and she said something like, “Don’t do that.” I said, “I didn’t mean to do it.” Then she immediately broke down into tears and heavy breathing as if she were having what I call a panic attack. She told me she knew I would never scare her on purpose. She couldn’t stop crying and continued to breathe heavily. I tried to calm her down by putting my arms around her and holding her, but that didn’t seem to help. She went into the bathroom to put on her lipstick. I followed her and rubbed her back and started playing some soft music on my phone. As she continued to cry, she said, “my mind is going. The medicine is not working.” I held her tightly. She lay back down in to calm herself. She must have cried a total of 15 minutes. This was the biggest breakdown she has had.

For me this was a sign that she hasn’t deteriorated so much that she is unaware of her decline. I was moved by the anguish she expressed and couldn’t help thinking about how much of this she carries with her all the time without my being aware. If I can’t fully grasp the extent of her suffering, how could anyone else do so?

After she had calmed down and we prepared to leave, she commented that she was all right now, that she has just broken down. She went on to say that she thought that she normally is able to control herself better. Moments like this reinforce my efforts to avoid making her feel “not good” to quote a friend of mine. This is his advice for everyone in all situations. That is a special problem to avoid with Kate and, I believe, with other Alzheimer’s patients.

Posted on

Fifty-first Anniversary

Yesterday we celebrated our anniversary by making a daytrip to Asheville. It was a nice day, the first time we had been back to Asheville in 4-5 years. Next year I plan to go for 3-4 days. We always love it.

When we got up yesterday morning, I noticed that Kate was beginning to embark on her pictures on her computer as I was going out for a short walk. I said something about our needing to leave at 9:15 or so. She looked at me with a blank expression. She had totally forgotten we were going to Asheville and that it was our anniversary. This is not a surprise as she normally forgets things like this. I just thought there might be a possibility that she would remember. Once I told her it was our anniversary, she remembered we were going to Asheville. She then said, “Happy Anniversary.” She got up immediately to get ready. This is a common reaction when she learns that she has forgotten something. My interpretation is that we both understand why she has forgotten; so she doesn’t apologize or act apologetic. She simply moves ahead with whatever she should do to correct the problem.

Everything went well on the trip. We even met a couple from Newnan, Georgia. He is a cardiologist who taught in a medical school in Wisconsin after leaving private practice. Then he spent 10-14 years in medical missions. After that went to seminary and is now a parish associate at a Presbyterian church in Newnan. Kate got along quite well with the couple. I cannot imagine that they suspected her Alzheimer’s at all; so we continue enjoy ourselves and very little happens that would make someone suspicious.

She continues to be a bit more emotional than before. Most of the time this is a positive. She likes, should I say loves, everybody and everything. On the other hand, she also is a little snappy with me at times. This morning, for example, she told me not to “ever do that again” when I was combing the front of her hair. It apparently was already the way she had wanted it. This kind of thing passes quickly, but it resurfaces from time to time. I suspect I may see more of this in the future.

Posted on

Going Back Home

As we were preparing to leave the Residence Inn in Lubbock, Kate made a point of telling me she was taking her computer on board the plane to Knoxville. I told her she seemed quite insistent on that. She said, “I thought you would tell me not to take the computer on board; to take the iPad.” This is an illustration of the frustration she is having with me and the irrational thinking that is becoming more common. Of course, she was going to carry her computer on board. That is what she always does.

Sticking to a time schedule is a consistent problem. For example, at 8:30 I told her that breakfast would end at 9:30. I said that she did not have to rush, but I wanted to let her know how much time she had. At 8:50, I told her she had 30 minutes to get ready. She was still in bed. She was still getting ready (slowly) at 9:17 when I told her I was worried that she was going to miss breakfast. We left and made it. Without my pushing, she would never have made it.

Posted on

Back Home and Taking Stock

We arrived back home from our trip to New Zealand on Thursday night, March 12. It was a truly fantastic trip, everything I had hoped it would be and more. Here are a few summary observations that are relevant to how Kate did on the trip and the state of things today.

Besides simply making the observation that the trip went well, I need to say that my guiding assumptions for the trip turned out to be correct. I deliberately chose for us to do the trip on our own rather than going with a group like Overseas Adventure Travel. I did this based on the fact that I felt under a good bit of pressure on our last trip with OAT to South America. There were so many times each day that we had to meet the group at a specific time that it put undue pressure on me to see that Kate was ready. That, in turn, put pressure on her that she does not like. Then we are both uncomfortable.

Second, I decided that we would go without any rigid plans other than the places we would visit and the lodging. I felt that we would do it in a leisurely way without worrying about trying to do everything. We would simply enjoy what we were able to do, and this is exactly what we did.

These two things made the trip go well. Even so, I felt a good bit of pressure during the entire trip. Prior to this trip I thought this might be the last trip of this type and duration. I am convinced of this now. It is simply too stressful for both of us. I think I will focus on more cruises in the future.

I am thinking this in large measure because of issues surrounding packing and unpacking her suitcase. This has been a problem for me on each of the recent occasions we have traveled. It is hard (no impossible) for her to plan what she needs to take with her. It seems she invariably doesn’t take enough underwear or socks. On the trip to South America and this one, there were occasions she wore my underwear and socks. When I tried to encourage her to take an ample supply of both of these items before the trip, she was resentful of my trying to tell what she should do when she feels she knows how to handle this kind of matter.

Prior to our packing, I did get her to agree that I would do the packing if she would give me the clothes she was to take. I noticed that she seemed to have a disproportionate number of pants and few socks and undergarments. To the best of my memory, she took 12 pair of slacks, 2 bras, 2-3 pair of panties, and 2-3 pair of socks. I bought her a duffle bag that had a bottom compartment in which I put all the slacks and a few other things likes blouses or jackets. I bought several packing bags in which I put all the others things in the top part of the bag along with 2 pair of shoes.

I did not expect her to remember where the items were, but I did want her to let me get things out for her and put them back. Nevertheless, she would start pulling things out of the suitcase. If she didn’t find what she wanted. she would throw the things on the floor. This meant that I was routinely re-packing. As the trip progressed, I was able to gain some control over this. I was never completely successful. I think this problem would be minimized on a cruise where we would not have to pack and unpack so frequently.

Even though our trip was leisurely there were times we had to be some place. That meant that there were times that I needed to prod her to get her ready. She moves very slowly and doesn’t like me to rush her. That is just as true at home as it is on a trip.

Additionally, there are many things she doesn’t understand. That can lead to problems when you are traveling. For example, in the Auckland airport, they have a line with a camera that takes a picture to match with your picture on your passport. This was new to me as well; so I didn’t realize until it was happening that I was having my picture taken. At any rate, I walked up to a doorway something like the security doorways at airports. There was a mark on the floor prior to getting to the doorway and a sign that asked that people wait behind that line until the person ahead was finished. Kate didn’t see it and walked up right behind me. The camera was “confused because there were two people. I got a message that they couldn’t clear me, that I would have to have special assistance. That meant that I had to go around another way and leave Kate to go through the line by herself. She was confused as to what to do. I had to coach her from the inside of the area where she was going.

The next time we went through equipment like this I was able to get through without any problem, but I think she moved while her picture was being taken; so she had to seek special assistance. Again, that left me on one side while she was on the other. Fortunately, there was visibility; so I could direct her where to go for help.

I also worried that we would get separated in some of the places we visited and knew that she would not know how to tell somebody where she was staying.

Despite these things, we really did have a great time and are looking forward to subsequent trips though they will be easier to manage than this one.

Posted on

Sydney

We are at the end of our month-long trip to New Zealand and Sydney. We have had a wonderful time. It was everything I had wanted it to be. My decision to do this trip on our own was a wise one. It was also good that we planned to do it leisurely and not worry about trying to do everything.

I have had my hands full on the trip. It is especially hard to maintain any order. For example, when we arrived at a location, she would pull her clothes out of her suitcase and throw them on the floor. I am sure she was looking for something specific, but it makes it difficult to find things later on if they are scattered about the room.

Going through check-ins is a bit of a problem. She generally does not understand what she is supposed to do even when I give an explanation. When we were going through customs in Auckland, one person was supposed to walk through a screening device while the person behind waited behind a white line painted on the floor. I went through first to show her what to do. Instead of stopping at the line, she followed right behind me. This messed up my screening; so I had to go back and do it again.  After I got through the line, it turned out that she didn’t understand what she needed to do. We had to stop at a point while the scanner did a scan of our faces. She couldn’t get this right. There was no way for me to go back and help her. I had to get a customs official to go around and help her.

Something similar happened when we were taking a train someplace. She put ticket in the slot and then tried to walk through a different turnstile. These are little things, but it creates a lot for one person to handle. This is the kind of thing I had never thought about before. I am sure I will get used to it.

Posted on

Short-term Memory Gone?

I am in our room at the hotel here at Chautauqua awaiting Kate’s return from downstairs. Several things have happened in the past few days that suggest her very, short-term memory is rapidly going. She went downstairs about 20-25 minutes ago to get a piece of carrot cake left over from our lunch at the Italian Fisherman this past Saturday. I suspect she ran into our friends from Houston and is engaging in conversation with them. This is not a problem except that I know that she wanted to buy some tights because of the cold weather yesterday.  We planned to go directly from our hotel to the Refectory for iced tea to which she has become addicted in recent years. Then we were going to the farmer’s market for a muffin or other breakfast treat. In 30 minutes it will be time for the Jim Roselle’s radio show during which he interviews the speaker of the morning. These are all things she wants to do, but I am sure she has forgotten that.

Yesterday afternoon we stopped at several shops on the plaza.  After coming out of one, she said she wanted to go in one more. Then we could go. I pointed out that she had already gone through that shop. She didn’t remember it at all and said she wanted to go through it again, and she did.

I am always facing the dilemma of how or whether to call her attention to such things. It is hard not to do so because we are so conditioned to say, “You’ve already been there” or whatever seems natural. On the other hand, I fear that each time something like this occurs it makes her feel bad, and I don’t want that. I am trying not to fret. I attempt (frequently not successfully) to take a breath before answering and think of the right thing to say or whether or not to say anything. Perhaps with experience, I will get better.

Another example occurred at dinner last night when she told our server something and only minutes later Kate told her the same thing.

Posted on

Growing Weary?

We’ve had two really good days at Chautauqua, ones that remind us why we like coming here. I have the impression that Kate feels this even more than I. On the other hand, tonight I observed  a behavior that I have seen before and that is a desire to simply relax and not attempt to do everything. That occurred this evening when we were at dinner here at the Kevin Hotel. She suggested that she thought I might be thinking the same thing that she was thinking. She didn’t say what it was, but I thought (correctly it turns out) that she did not want to go to the evening performance in the amphitheater but simply relax at the hotel. After dinner she asked if we couldn’t go out on the porch off our room and have a glass of wine. I said that would be fine, and I meant it. As it turns out, I had already decided that we would skip all or part of the evening performance. I thought that she did not know what the program was because we had not discussed it, but I now recall that our afternoon speaker, Justice Anthony Kennedy, had said that he was here for his granddaughter’ dance performance this evening. This notwithstanding I thought it was unusual that she just wanted to stay in tonight. This is something we have rarely done in all the previous times we have been here.

The reason I even mention it is that I observe that Kate more frequently wants to retreat from social engagement than in the past. Of course, this could be something else. On the other hand, when I observe things like this, I always think of the possibility that it is related to Alzheimer’s. Perhaps this is another good reason that I think she is correct in not wanting others to know of her diagnosis. If they knew, they might be looking at everything as a function of Alzheimer’s.

One thing I do know is that she has handled herself well socially. Tonight at dinner she was able to engage in conversation with those at the table with no difficulty at all. She was especially cordial to two Japanese guests that arrived today from Tokyo. We have also spent time with a couple from Tom. They have also introduced us to some of their friends, and Kate has handled the situations normally.

Posted on

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.

Posted on

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.

Posted on

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.