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.