I’m not really a writer; I just play one on TV (whoops, I mean this blog). What I mean is that I have neither the desire nor a special talent for writing. That would be especially true if I were writing fiction. Let me explain.
In this blog, I simply attempt to present an accurate account of what “Living with Alzheimer’s” is like for Kate and me. That doesn’t require any special creativity. It does demand that I pay attention to what is going on and write down my observations as quickly as I can. That has worked for a long time. While I wouldn’t say that every post does a particularly good job of that, I do think readers can get a pretty good idea of what life is like for us if they are regular or even periodic readers.
Recently, I find that so much is happening that I can’t remember everything and don’t have the time to make adequate notes during the day. That fact has made me appreciate the writers of fiction, especially those writing about the lives of caregivers and people with dementia. They always seem to have the necessary knowledge of dementia and the ability to write realistic portrayals of what it is like along with telling an interesting story.
For quite some time, I don’t believe I have given proper credit to the work of such writers because, after all, it is fiction. That couldn’t be as good as the “real thing” could it? However, I now feel that my own non-fiction account is somewhat compromised because of my failure to remember relevant events or conversations. There is simply too much coming my way to remember all of it. If I were a fiction writer, I could just create a situation that conveys the same message, but that has two problems for me.
First, is that it seems awkward to mix fiction and non-fiction. The reader might be confused about what is fiction and what is not. I don’t want that. Second, I don’t feel like I am sufficiently skilled to write a convincing fictional account of our lives. With that in mind, let me attempt to describe a significant change that is taking place.
From the beginning, Kate was quite normal. That’s how the story begins for all of us. In fact, she was so normal that she wasn’t concerned at all when she had her memory slips. Sometime later these slips became more common. I heard her say, “I think I have Alzheimer’s.” I gave her the typical, and truthful, response. “Everyone forgets once in a while. You’re all right.” We continued this exchange off and on for the next four years or so. She began to get lost when going somewhere in the car. We had several episodes in which I had to give her directions over the phone or drive to where she was so that she could follow me home. I began to recognize she was right. Finally, we talked with her doctor and went through the process of getting a diagnosis. It really was Alzheimer’s.
When we think of Alzheimer’s, or any other dementia, we tend to see an image of a person who is in the advanced stages of the disease. That is usually the “tip of the iceberg.” For much of the time, a person with dementia behaves quite normally. That is one of the good things I have learned since Kate’s diagnosis. That has enabled us to live rather full lives despite Alzheimer’s.
Now that she has reached the last stage (that can last years), we experience more dramatic changes. For the first time, I see what I have heard other caregivers talk about. It is a blending of what is normal and what is not, or, as I put it in the title, a blending of our world (yours and mine) and her own. She lives in both and shifts almost seamlessly between the two. Increasingly, she lives in both worlds at the same time.
Most often I have illustrated this blending with a story about Kate’s responding to me perfectly normally and then saying something like, “I love you. What is your name?” Now I see it in interactions like we had last night.
We had a good day though she wasn’t as talkative or cheerful. I don’t recall that she asked my name or hers the entire day. We came home from dinner, and everything was fine. I pulled up some YouTube songs from the musical Annie and then My Fair Lady. She enjoyed them. Then we started to get her ready for bed. We started with the bathroom. After brushing her teeth, she washed her face and arms. She rubbed them as though she were trying to get something off. That’s when she said, “Look. Can you see what I am doing?” I said, “Yes, you’re washing your face.” She gave me a look of irritation and said, “No, can’t you see that I am getting them.” (She frequently talks about things that are on her body. Often she gets one on her finger and shows it to me. I’ve never been able to see anything.) Having been through this before, I said, “Oh, yes, you’re doing a good job.” She said, “Well, it takes a while, but it’s worth it.”
From there we went back to the bedroom. Before getting into the bed she sat down and crossed one leg over the other so that she could work on her toes. This is one of her rituals in which she runs her fingers between her toes “to get them out.” She wanted me to watch. I was obedient. Then she wanted me to do it for her. I told her I had another way to do it. I got a hand towel and rubbed it several times between each toe. When I didn’t do it to her satisfaction, she told me I missed a spot and to do it over.
Then she got in bed and started pulling her hair. Again, she wanted me to watch. She said, “I want you to know what I am doing.” I knew what was coming next. She wanted me to do it for her. This time I told her I thought she did a good job and that I wouldn’t be able to do it as well. She accepted that. I should emphasize that during this entire time, she was talking normally as she always does. It was only what she said that was strange.
These days I never know how she will be from one moment to another. It keeps me on my toes in terms of how to respond to her. Fortunately, I’d say that more than 90% of the time when she is in her world, we are able to enjoy our time together. That’s a big plus for me. I know that isn’t true for all couples “Living with Alzheimer’s.” I do, however, believe that is a hopeful message for others traveling this same road. It is possible to live happily with this disease. Kate and I are not alone. I have read a number of accounts of other couples who have had similar success, but most have grimmer stories to tell. I wish everyone were as lucky as we have been.