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A Couple of Experiences on the Road

We left Knoxville for Memphis yesterday. We stopped for lunch in Nashville with Ann and Jeff Davis. Early in the conversation, I asked them to tell us about their recent  trip to Italy. They had told us a little when Kate said she wanted to tell them about the wedding we are going to this weekend. It is the wedding of a granddaugher of her cousin Tina. It seemed a little abrupt as the Davises had said so little about their trip. I said, “We just finding out about their trip.” She said she thought they were through. I just let her go on with her explanation of the wedding.

When she told the story, it was somewhat disjointed. She first said she had to back up and tell them about her cousin Tina. It was a challenge for her to explain and it took her a while. I helped her with a couple of things. I think she gets frustrated with so much conversation by other people, and she wants to be involved as well. But she doesn’t have as large a set of things she can talk about. A little later in the conversation she said somewhat sternly that she wanted to a chance to say something.

As we left the restaurant, she asked, “What was this place again?” I told her, and she said, “I knew that.” Of course, she really did know that. She simply couldn’t remember what it was until she was reminded of the name.

When we got to Memphis, we went into a McDonalds for something to drink. While I went to the men’s room, she went to a table occupied by a staff member and sat with her. When I got back she was engaging in a conversation with the woman. This is something else that she might not have done years ago.

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Slight Unease in Public Gathering

Last night we went to a birthday party for our next door neighbor. It was a large gathering, perhaps as many as 150. There were many people we knew. We also go to the same church. Thus we had a lot of church members there as well as neighbors. In addition, there were other friends that we just happened to know. I had a good time. Kate did as well though she was not as enthusiastic about the event as I. At events like this, we often split up. That happened last night. I felt a little uneasy when it happened because of the large crowd and a feeling that she might feel lost when she didn’t know where I was. As it was, I believe I was the only one uneasy about being separated. On the other hand, I did get the impression that she was not enjoying herself as much as I. That is because I saw her a few times standing by herself while I was always engaged in conversation with somebody. At one point I saw her leave the room and walk down hallway toward the exit. She walked back before going very far.

Her behavior at the party makes me think that social situations like this are becoming more difficult for her. I suspect that the easy part is seeing someone, greeting them, and engaging in the usual small talk. After that, she may find it more challenging, especially when there are several people together, and she finds it difficult to process all that people are saying and respond appropriately. My assessment is that events like this are just too confusing for her.

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Deja Vu Experiences

It has been a while since I have mentioned it, but Kate continues to have Deja vu experiences. For example, yesterday or the day before, we were driving on our way to church.  We saw two women walking on the sidewalk. She pointed out that she has seen them before walking along about “this time.” Of course, it is really doubtful because she doesn’t have a car, especially this time of morning. A little later she saw someone else and said she had seen him before. At Panera in the past few days, she has pointed out people she has seen before. This even happens in places where we have not been before. I never challenge her or tell her she couldn’t have seen them before. There would be no purpose in doing so, and it might hurt her. It is amazing how natural it is to want to correct someone. It requires self-control. Once in a while, I find myself failing in this respect.

These kinds of experiences make it clear to me that Alzheimer’s not only affects the memory but also other aspects of the brain. Another example of that occurred yesterday. When I arrived home, I discovered that she had brought in the garbage bin from the street after the garbage had been picked up. She had left it out instead of returning it to the garage where we keep it. When I looked in it, I saw that she had put yard trash in it, something she would not have ordinarily done before Alzheimer’s.

While at the office yesterday morning, I called our former dentist, Hank Noble, to see if we could get together again. It has been several months since we last did so. We talked about 20-30 minutes and set a day next week to meet for coffee at Eggs Up. I had a feeling that I had gotten the very first time we talked. He is suffering much more than I am. He says he is getting along well but then what he says lets you know he is troubled. He told me that he was having difficulty making himself do little things like write checks to pay bills. Another friend told him that he was depressed. Hank said, “I don’t feel like I am depressed, but I guess that is what it is.” Another indication of his depression is that he said he needs to begin thinking about possible arrangements with some kind of facility for his wife. He said that he hasn’t been able to make himself think about it as though if he doesn’t think about it, it will go away.

He asked how we were doing. When I told him about our having had good trips to Switzerland and New York and that we had gone paragliding in Switzerland, he was amazed. He expressed a touch of envy that we were getting along so well. I will have to be very careful in our future conversations not to make him feel badly about this. I did tell him that our time is coming, that we had been very fortunate, and that both Kate and I often talk about how grateful we are for our circumstances. He reiterated how fortunate he and his wife are that that have the financial resources to provide the care that his wife needs. He has had 24/7 care for 8-12 months or so. His wife can’t walk on her own and cannot feed herself. He indicated how hard it was for him to look across the room at his wife with her head slumped toward her breast much like we envision those in nursing homes. He says he sometimes just has to get up and leave the room. He misses conversation with her. He had told me that the previous time we spoke.

I plan to stay in touch with him even though I don’t feel he is in a position to provide me a great deal of support. I feel I will be able to help him more than the reverse. There is another way to look at it, however. I draw strength from people whenever I am around them (most people at least). It isn’t necessary for him to express any special concern or support for me to benefit or be strengthened. Just having another person to talk with will help me down the line. I am thinking about the time when Kate has progressed much further than she has now. At some point, his wife will pass away. At that point, he may not feel the need to get together.

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A Visit With Out-of-State Friends

Debbie and Bruce Morton (a TCU roommate) visited us yesterday after spending two days with friends in Nashville. Kate’s memory of them was sketchy. We hadn’t seen them in a while and was a little uneasy about the visit. When they left, she talked about how much she had enjoyed the visit. She got along quite well. I noticed a few little things that the Mortons would not have noticed. David told me he and Vicki were surprised at how well she is doing. These are two common things about visiting with friends. Kate is often a little hesitant about getting together with people she doesn’t remember. The other thing is that everyone always is struck by how well Kate seems to handle herself. They often say, “If I hadn’t known, I would not have suspected she has Alzheimer’s.”

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Thursday

Today’s Kate went to her PEO chapter’s meeting. This was just a social and not a regular meeting. I had gotten an email reminding me of the meeting 3 weeks ago. Kate had also received an email (at least I assume so), but she had never mentioned it to me. In order to prevent her awareness that I am communicating with a couple of her PEO sisters about things like this, I simply mentioned this to her a week or so ago as though it were something that she might have told me. She never questioned how I knew. I reminded her yesterday that she would be going today. She asked me what time we were going but nothing else. I told her I was going to take her to our church where she would meet someone who would take her to the meeting. She showed no surprise that I knew this. When we arrived, she got out of the car while one of her sisters came over to speak with me about making arrangements to get her back home. I noticed that she didn’t say much to but gave me more attention as if to say that Kate doesn’t really understand, I’ll tell Richard. After they returned, Kate said that the people in the car are big talkers and that she had a hard time getting in to say anything. I suspect that what is happening is that people are beginning to treat her as though she doesn’t understand. In other words, they are treating her in the very way that Kate has been concerned about. That is why she hasn’t wanted people to know. Things like this make me feel for her.

When she got home, she seemed tired. She has been in the bed ever since. Some of that time she has been working jigsaw puzzles on her iPad, but she has also slept. That is what she is doing now. I am about to get her up to take her to dinner. I have a dinner at the convention center this evening in connection with my responsibilities at the foundation. I think the social activity of the day has worn her out, another sign of Alzheimer’s.

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Good Friday Update

Wednesday afternoon (April 1) Ann and Jeff Davis were in town; so we arranged to meet them for dinner at Il Giorgioni at 5:30 pm They were not sure when they would be finished with a hearing at the State House; so they called when they got out to arrange the time. Kate was outside working in the yard. I went out to her and told her that the Davises had called and we would meet them in about an hour. She said she would come in to take a shower and dress. I came back inside. Knowing that we had plenty of time, I didn’t worry when she didn’t come inside right away. She did so in about 20 minutes. There seemed no reason to worry. When I saw that she was getting dressed, I still did not worry. When she wasn’t completely ready 10 minutes before I had planned to leave, I went to her to ask how she was coming along. She told me to leave her alone. I did. I didn’t want to start another panic attack. When it was time to leave, I checked on her again. She was indignant and again told me not to talk and leave her alone. Finally, we got in the car at 6:00, the time we were to meet the Davises at the restaurant. At 5:25, I called Ann and told her we were running a little late.

After getting in the car, Kate asked what time we were to be there. I told her we were to have been there 30 minutes earlier. She then went into a panic and said she didn’t know. She wanted to know why I didn’t tell her. I told her I tried to explain but that she wanted me to leave her alone. This attack was not as severe as the last one, but she was still teary when we arrived in the restaurant parking lot. We took a moment for her to compose herself and went inside. She was very embarrassed about running late and felt it was her fault. She apologized to Ann and Jeff for being late.

Just before the Davises left to go back to Nashville, Jeff said he wanted to go to the men’s room. I said I needed to go as well. In the men’s room I told Jeff about Kate’s Alzheimer’s and explained that is what accounted for our being so late. Yesterday afternoon, I called Ann and apologized for telling her through Jeff and wanted to give her a little more information. She was quite tearful throughout the conversation and had me tearing me up near the end. She wanted to know what they could do. I told her it would be nice if we could come up to have lunch with them sometime in the near future. She mentioned that they are coming through on the way back from North Carolina next week and could have dinner with us. I told her that would be great.

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A visit with University of Wisconsin Friends

We had a very nice overnight visit with Marjie and Ed Hinton yesterday. They arrived just after 3:30 and left this morning around 9:30. Everything went smoothly. It was like old times with Marjie who was a close friend when we lived in Madison 1965-68. Although she has remarried, we still feel close to her as well as her new (31 years) husband, Ed.

I doubt that either of them suspected Kate’s AD. A number of things were apparent to me but were probably not noticeable to them. When we were driving near the University after dinner last night, Kate commented that basketball was really the big thing around here. She is right that basketball is popular, but football is king. There were also a couple of times that she either repeated something she had said before or something I had said.

In addition, one of the things that has emerged during her “illness” is a greater interest in family. I don’t know that this is caused in any way by AD, but her jumping into conversations with people to talk about her family has increased tremendously over the past few years. It often comes out in talking over other people who are speaking. She seems eager to tell people about her family.

She really enjoyed showing the Hintons her yard. They both took a good bit of interest, and I must say that things look beautiful. The beauty was enhanced by two beautifully sunny days. I am sure she took great satisfaction in seeing her efforts being recognized and appreciated.

I should add that although she had been talking about and making preparations for their visit all week, she had forgotten about their coming yesterday until I mentioned something in passing. That was about 4 hours before their arrival. It was as though she had never known about it. That and a problem getting ready in time for a hair appointment led her to suggest that we get a calendar to post on the refrigerator door. I think that may be a good idea as well although I think I need to continue to enter things on my calendar with reminders to jog memory.

The good news is that even this far into her AD, Kate is able to enjoy life, and that together we are making the most of the time we have.

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More Good Times

Yesterday was Memorial Day; so the office was closed. I did not go to the Y because of my back. I did take a 2-mile walk in the neighborhood. Kate and Ellen went to lunch . Then they went to a nursery before going to a movie at The Flick. I went to lunch at Panera and then to the Acura dealer to have the car serviced. I then went to the store and bought a pot roast, the fixings for spaghetti sauce, and tilapia. We had the fish last night before going to a neighborhood gathering to welcome the new neighbors on our street.

While there Kate got in a conversation with two women. One of them asked if she didn’t get bitten by bugs while working in the yard. Kate told her not very much and that she used Listerine to keep them away. They acted surprised. She told them it worked for her. This is something I have ignored for quite a while. I was thinking that she got the idea by hearing that it was good for bites not as a preventive measure and that she had simply misunderstood. At any rate, I let this go because it annoys her when I challenge her on things like this. I felt awkward with the neighbors because I didn’t want them to believe it would work for them and learn later that it does not.

Kate was quite sociable. She went her way, and I went mine. We both had a good time. When we got back home she joked with me that I was not the only one who could socialize. She jokes like this frequently now, something she didn’t do before.

This morning we went to breakfast with the Y group. She had a good time, especially as it was ending. We walked out with a couple of people and were talking with them outside the restaurant when we saw two other people we know. We must have talked with them for 30 minutes. Larry asked her if she had been to Texas lately. We said yes, and Kate said we went to Fort Worth for one day. We did not go to Fort Worth on this trip. We did go there in December. In that case we went for 2 days. There are lots of examples like this in which the listener would have no basis for questioning what she says. This is another way that Alzheimer’s can remain hidden for so long. Then another church friend and his caregiver, Judy, came out of the pancake house. We then engaged in conversation with them for another 15-20 minutes. Kate spoke with Judy about our getting together for lunch one day. This is something I see happening more often nowadays. In the past she might not have done it or at least not been as enthusiastic about it.

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Why don’t people notice?

This is really a rhetorical question to which I know the answer. I still find it interesting that with so many signs of problems Kate successfully conceals her Alzheimer’s from most people. The reason is that other people see such a small part of her behavior. The time they are with her involves ordinary social conversation that she is able to handle as well now as she could in the past. I, on the other hand, am with her so much and get to see much more than others. This morning, for example, she let me know that she had called Ellen to arrange lunch and go to see a movie this afternoon. Although I had told her yesterday that the movie does not start until 3:00, she had forgotten. That would mean a long time between lunch and the movie. She called Ellen, and they worked out plans to do something in between lunch and the movie. Had I not intervened, they would have worked out things on the spot.

I told Kate she had an hour until Ellen was to pick her up. She said she was coming in anyway because of the heat and humidity. Thirty minutes later she was still outside. I told her she now had less than 30 minutes until Ellen arrived. She came in and started to get ready. She did a good job getting ready. Ellen came almost 15 minutes early; so she only had to wait 5-7 minutes before Kate was ready. This is part of a daily occurrence. Nothing too serious, and Ellen would probably never have connected it to Alzheimer’s if Kate hadn’t told her. Even then she may not have noticed anything. Most things are simply unseen by others.

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Normal Ups and Downs

The Robinsons visit last Wednesday was a good one. It gave Kate a psychological boost. It was a non-threatening experience in which she could chit-chat on routine things and things from the past. I find that all experiences whether it is a good movie, a theater production, time with friends, eating out, etc. play a part in keeping her spirits up. I don’t mean that she gets depressed regularly. She does not. It’s just that she enjoys having things to do. That is increasingly important as her ability to do some things decreases.

We have been pretty active in the days since the visit. One of the things that she has enjoyed most was a book festival. We went on Saturday and Sunday specifically to see and hear one of my former clients who has written a book about his experiences in public relations. In addition, we browsed through the vendor area and saw a number of people we know in the hallways and in sessions we attended.

Kate got depressed when she was getting dressed for church. She had a hard time finding something that fits. This kind of situation occurs more frequently now. While the fundamental issue is her weight, I have tried to see that she has slacks that will fit. As I noted in one or two earlier posts, I took her to buy clothes about 6-8 weeks ago. We got 5 pair of slacks and several tops to go with them. She has rarely worn them. I assume that is because she forgets she has them. I have put the new clothes right at the front of the closet so that she can find them easily, but I am now assuming that she customarily has put things in some other location. I need to be more conscious of when she is getting dressed and helping her pick out things. The problem with this approach is that she is coming to resent my help thinking that she doesn’t need it.