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Asking Permission

Despite her objections that I am trying to control too much of her life, it is interesting that Kate is increasingly asking if it is all right for her to do things. Two examples occurred at dinner this evening. After ordering, she asked me if she could start “my album tomorrow.” I told her that would be good. Then I asked if she were talking about her Chautauqua album. She said yes. After dinner, she pointed to the parsley that she had taken from her plate and placed on a paper napkin on the table. Without using words, she was asking if she should take the parsley home for her compost. That is what she always does. Why she happened to ask about doing that tonight I can’t imagine. I told her that she could take it if she wanted to. She said something like, “I don’t have to.” She brought it with her when we left.

When we got home, we both sat in the family room where I watched the news on PBS while she worked puzzles on her iPad. When it was almost 8:00, I told her I was going to take my shower. She decided to go into the bedroom. She sat down on the bed and pointed to the charging cable for her iPad. She didn’t say anything. I didn’t understand what she meant but said, “Yes.” When I said that, she reached down to disconnect the cable from the surge protector. Then I asked what she was going to do. She asked me what I wanted her to do. I told her she could leave it plugged in, that we were “not going anywhere now.” Then she said, “What am I going to do now?” I told her that it was getting near the time she would go to bed and that she might put on her night clothes. She indicated she would do that. Then she picked up her iPad and started to work on it in bed. After my shower, she was still in her clothes. I walked over to her side of the bed. She pointed to the sweater she was wearing. Then she said, “This or my night clothes?” I said, “Your night clothes.” In a few minutes, she got up and changed. Just another illustration of using minimal words and asking for my guidance even though she still wants to be very independent.

Yesterday afternoon, Kate and I were talking about some of our memories when I suggested that we start a project of writing down our memories from our life together. She liked the idea. This afternoon she had reached a point when she was ready for a change. We had been to Panera this morning. Then we had lunch. When we got home, she pruned in the yard. Then she had worked on her iPad for a while. I could tell she was getting bored. Instead of asking if she would like me to take her to Panera, I asked if she would like to work on our memory project. She liked the idea and suggested we do it at Panera. We did it. She told me from the start that she would have to depend on my memory. I suggested we try to write down how we met and something about our first date. Then we started a second section on places we have lived. We only addressed the first place in Fort Worth. I could see she was getting tired and suggested we stop. I told her that I didn’t want us to think of this as work, that we would not have to work on it every day, just as we felt we wanted to. This first effort was better than I might have predicted.

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“I’m So Frustrated With Myself.”

Earlier I neglected to report that as we were pulling out of the garage to go to lunch, Kate said, “I’m so frustrated with myself.” This was after several things she had done as she was getting ready to leave. I said, “I know you are frustrated.” Then I asked her if she would like to talk about it. She said no as she always does. She just doesn’t like to talk about her Alzheimer’s.

A few minutes ago as she was coming into the bedroom for the night, she said she wanted to thank me. She said she was falling apart and appreciated my taking care of her. I said, “I know you’re frustrated. I want to help you.” She said, “That means a lot, that you want to do it, and I know you do.” When she says something like this, it makes me want to do all the more to help her. On the other hand, I can find it frustrating myself when she won’t let me help. For example, I wanted to give her a Benadryl this morning. She asked if it would make her sleepy. I told her it would. She didn’t want to take it. This afternoon she has been having more trouble with her nose. I told her I was going to give her a Benadryl before she went to bed and that I wish that I had gotten her to take one earlier. She agreed, but earlier she didn’t want to take it. It is hard to know what to do, when to push and when to back away.

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Funny Thing

I came home to take Kate to lunch before going to my Rotary meeting. Two or three weeks ago, we talked about my taking her to Chalupas, her favorite Mexican restaurant, since Ellen is no longer able to take her to lunch on Mondays. I really felt like it would be more convenient to go to Panera instead. Before leaving she asked if she had a cup in the car. I thought that signaled that she had forgotten about Chalupas; so I got a cup with the idea of going to Panera. In the car she asked what I was doing this afternoon. I told her I didn’t have any plans after Rotary. Then she said, “Oh it’s Rotary. I thought we said you would take me to Chalupas on your Rotary day.” Then she went on to say, “I’m the one with Alzheimer’s, but you forgot.” I said, “Sometimes I forget.” Then she said, “You remember the things that involve you. When it involves me, you don’t remember.” What makes this funny to me is the way she said these things. It sounded serious, but it was done very lightly as though she were kidding me. In fact, when we got out of the car to go to the restaurant, she said, “You have to have some faults. I can’t think of anything I would change about you.”

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Still Believing No One Knows

Last night Kate and I sat in front of the fire and just relaxed. It was one of those rare times that she has spoken about her AD. We talked as we have before about how well we have gotten along since her diagnosis. I told her I thought the past 4 years had been the best of our marriage. She hesitated and didn’t quite agree. She preferred to say that we have gotten progressively better with the passage of time. A little later he did acknowledge that the past 4 years have been especially good ones for us.

In the discussion she said something she has mentioned before that no one knows about her condition except Ellen, Ken, and Virginia. She even noted that no one would suspect. Quite naturally, I do not dispute this notion. This is the way she wants it. I want to support to the extent I am able. When she says these things, I must admit to a tinge of guilt for having told our children and even more for telling special friends like the Greeleys and Robinsons or my staff.

Perhaps because I know that Kate’s PEO chapter is aware and that another friend told me he had heard about Kate, I am becoming to suspect that others at our church might have an idea. The other day someone asked me if Kate is with me on most Sundays. I have told her before that Kate is in the library. Sometimes she asks if Kate is in the library. This morning someone else asked me how Kate is. I may be especially sensitive now, but I wondered if she might know. Several other people ask about her, but all of the inquiries could be just normal interest. One day, however, I know that it will occur because they are aware.

I have awakened in the middle of the night several times in the past few nights. I have managed to get back to sleep, but it is has taken more time than I have been accustomed to in the past. Previously, I would wake up and then go right back to sleep. I don’t know if this is just something that is natural with aging or the stress that I feel as I try to keep things in order and think about the future when it will be more challenging.

I feel that my recent contact with several other friends and family members may be an indication of my feeling greater stress than I have had in the past.

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Mini-Discussion

I have mentioned before that Kate and I rarely have any conversations that relate directly to her Alzheimer’s and how she is feeling. This past Wednesday, however, we had a brief discussion. Here’s how it happened. I think I have commented before that she has a harder time understanding movies than she used to. She gets confused about the plot, especially if there is anything complicated about it. On Wednesday, we went to see Anna Jesseina. It was a modern adaptation that I won’‘t even go into; however, neither of us liked it. It also had a lot of very quick “cuts” during the early part of the movie that made it hard to know who was who and what was going on. I suspected this would be hard on her, and it was. (A similar thing had gone on at Un Ballo in Maschera at The Met.)

As we drove to Hathaway’s s for dinner afterwards, we discussed the movie. When we got there, she told me that she just couldn’t get any of it. She was confused the whole time. It made it very difficult for her to remain to watch the movie. Then she said, “”You know I am getting worse.” I acknowledged that she was correct. We discussed how fortunate we are to be enjoying things while she can. She indicated she didn’t know how long that would last, but her comments made it sound like she may think it will last longer than I think. I asked her if she felt any closer to telling the children about her Alzheimer’s. She responded very quickly that she felt we were a long way from that. I, on the other hand, had been thinking that we might want to tell them either before or after our trip to Jackson Hole in June. (My reasoning is that they might notice signs that would make them wonder.) I told her I knew she didn’t like to dwell on the topic but that I wanted to be more supportive if I could. The conversation didn’t last long, but it underscored my belief that she is quite frustrated over not being able to do things or to understand movies. I think that extends to books because I hear her talk less about her books than she used to do. I think her major reason for listening to books is to help her sleep and that she is not finishing books nor remembering what she has read. She is also playing Free Cell on the computer and her iPad more. In addition, she jumps around from one task to another. I suspect that relates to frustration she has with one and tries something else.

I had a brief conversation with our pastor this week. He mentioned that a member of the staff had thought things were not quite right with Kate after our return from New York. He also felt that our children probably know or have a suspicion. This makes me think that others around the church are beginning to notice. He encouraged me to tell the children, but I think that was mostly to help me since I do not have someone to talk with now. I told him that he and our attorney were the only ones who know.

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Beginning To Think About Our50th Anniversary

During this week Kate continues to feel some frustration over her AD. She has said “I am a disaster.” Also “I am a basket case.”

Our pastor called me on Thursday afternoon, and we had a lengthy conversation. He was calling related to a personnel matter (a replacement for our church organist) but also asked about Kate. I gave him a rundown on the situation which corresponds rather well with what I have written within these pages.

Last night Kate and I had a conversation related to our desire for travel in the years ahead. We also talked about our 50th wedding anniversary in 2013. Her priorities are to go to the Galapagos and New Zealand and then Russia. We also agreed that we would like to have a family celebration for our 50th. I am going to look into a beach house somewhere along the Gulf coast of Florida or Alabama. I didnt tell her, but I am especially interested in this experience in connection with her Alzheimer’s and decline. I can’t help wondering now if the children will know by then. I have to believe that if we spend a week together, they will have to suspect.

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Kate Is Discouraged

Last night Kate and I had a good but very saddening evening. When I got home from seeing Dad, I sensed that she was upset. She was working on our pictures from Vienna. She is making an album similar to the one she and her did for the her mother’s family. I asked her if she would like me to get us a glass of wine and go over what she had done so far. She accepted enthusiastically.

I got a glass of wine for each of us, and she continued working for a short time while I sat on the sofa for her to bring her computer to me. She started to express her frustration. She simply can’t remember names or events that she needs for the album. She had called me twice while I was with my dad to ask the names of two operas we had seen in Vienna. She was still having trouble with that and where we had seen them.

This led to a brief, but much a longer and honest, conversation on how she feels about her AD. She told me she wishes she would rather have cancer, a heart problem, or anything else but AD. She talked about the frustration she has about not being able to remember anything. She talked about her anger over my spending 2 hours a day with Dad when she needs me. We talked together about my spending more time with her. I told her that I had already been thinking that the change in our office arrangements might be a good time for me to spend less time at the office. She then mentioned the possibility of her coming to the office to be with me because she feels she needs to ask me so many things. She seems to feel lost when she is alone. At the same time she talked about her continuing ability to do things. She mentioned specifically that she often finally figures things out even if she struggles to do so.

I have said it before, but I now want to SHOUT it. People say that at least the person suffering from AD doesn’t know it. How wrong this is. Of course, in the much later stages that is certainly true. However, there are years before that when the person does know something is wrong even if the condition has not been officially diagnosed. In a recent conversation, she said, she wasn’t so sure now that she was glad to know.

At any rate, she can see herself declining. It is not just my own observation. Still, I don’t think many, or any, people other than I know her situation.

I continue to be sometimes feeling panic as I see that we are moving toward a time when our lives won’t be as idyllic as they have been. We still want to travel, share good times with friend, etc. I feel like that may be affected within the next year or two. I am going to have to work hard to plan things in order for us to do as much as possible. This comes at the same time that I have to worry about the future of my business and taking care of Dad.

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More Discouragement

Last night we had a nice evening – a fire, wine and cheese and olives, and good conversation. Kate indicated that she was discouraged over her decline. We both talked about making the most of the time we have together. We never talk in terms of specific amount of time, but I think she believes we have more time than I do.

This conversation was brought up by my showing her a video on Michael J. Fox and Family Ties and a song, “At this Moment.” I first heard this on the show and loved it but didn’t know the name. Periodically over the years I have thought about getting it. Yesterday I went to YouTube and found a part of the episode that included the song and then downloaded it from iTunes.

I put it and 24 other songs on a playlist on my iPhone and played them while we talked. The last song was a repeat of the first one I played, “At this Moment.” She had no recollection of the song when it was played again. Even though I had played it a couple of times and she indicated she liked it as well. That is when she said something about being discouraged.

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Reflecting on the Past and Looking Ahead

Last week we took our granddaughter back to Nashville to catch her plane to Houston. We both felt we had had a great visit with her. At the same time we recognized that we focus so much on her and the other grandchildren while they are here, that we get behind on other things. We stopped for dinner on the way home. We talked about our aging and how much we value our time together. We wonder how much longer we will be able to do the one-week vacation with each grandchild.

This past Saturday I selected 600 slides to send to ScanCafe.com for them to scan. I am trying to convert our slides to digital. As I was going through them, I became very nostalgic. I found myself reflecting on our time together in Madison, the move to Raleigh, and Jesse’s birth. Those were such special times for us. I couldn’t help feeling sad as I thought about the path on which we are now headed. This rekindled my more intense feelings about making the most of our time together in the weeks surrounding Kate’s diagnosis in January.

I am also noticing what I believe is a continuing decline in her condition. It is not great, but it seems like there are so many little things that occur that wouldn’t happen if she did not have AD. I am in a sad mood. This comes as I am also seeing a decline in Dad’s condition and a worsening of business conditions. It is a stressful time.

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Reflecting

Kate and I spent a little time in the pool Friday night and had a brief conversation about her adjustment. She indicated some frustration with her inability to handle things. I told her I thought she was handling things well. She agreed, but she said she thought part of what was happening was denial. She went on to explain that she accepted the situation intellectually but emotionally she hadn’t fully accepted it. I also commented on her sense of humor regarding her forgetfulness.

Yesterday morning she told me that she had made two other mistakes. One of these involved her giving a date of June instead of July in an email to a member of PEO. Another was to have left one of her Library Ladies off the email list for her communication regarding the lunch she is trying to arrange for them. Neither of these represents anything of consequence. In context of all the other little things that are happening, they do represent further reminders that her brain is not functioning the way it should.

During a conversation at dinner last night, we talked about aging and said something about 80. She said, “By the time you are 80, I will be –”  (here she did not say anything, she simply drooped her head the way she might do at a later stage of her AD). We made a few comments and then she started to tear up and suggested we change the topic.