LIVING WITH DEMENTIA: Please quit trying to make me remember something that I don’t. You see no matter how you keep trying to twist it to make me remember, I only get more & more frustrated & still don’t remember it. (Written by a person with dementia)
After breakfast and my walk this morning, I went to my computer. I found the message above when I checked in on Twitter. It was timely for me. With the progression of Kate’s Alzheimer’s, I have to be much more careful how I respond to her. Things that have worked in the past don’t anymore. Being a caregiver requires greater attention to more things than most of us imagine at the point of diagnosis. That brings me to what is really on my mind today – Kate and her iPad.
As I have conveyed for years, working jigsaw puzzles on the iPad has been her primary self-initiated activity since she stopped her yard work and use of her computer. I have also pointed to the increased difficulty she has with her puzzles. With my help, she has been able to continue, but we have reached the point at which she can’t follow my guidance. For a while, the primary problem was getting into the store. Once that happened, she couldn’t do anything. It was easy for me to fix but impossible for her.
More recently, the problem has been her ability to locate the pieces she needs and to figure out where to put them. For as long as I can remember, she hasn’t wanted to ask for my help. I would simply notice that she was sitting with her iPad but not doing anything. Then I would help her. My first step was to drop the number of puzzle pieces from sixteen to nine although I go back and forth. My next step was to tell her about the edge pieces. In a nine-piece puzzle there are eight of these including the corners. That leaves only one piece that goes in the center. I discovered that it was hard for her to see the flat sides that identify an edge piece. Sometimes she seemed to get it, but most of the time she seems to have completed puzzles by trial-and-error.
The past couple of days her own approach has failed her. She wanted my help yesterday, and I tried again. This is tough for me because I do know that her lack of rational thought makes it impossible for her to understand, but she wasn’t ready to give up. She still wanted me to help her. I began by trying to get her to identify the four corner pieces. She was unable to recognize them. I put them in place. Then I spread the four edge pieces so that each one was beside the empty spot where it should go. I even put my finger on the piece and then on the space immediately adjacent to it. That was also too much for her. I put them in their places.
Now there was only one empty space directly in the center of the puzzle and one piece left. First, I put my finger on the space where it should go and said, “Can you see that this is an empty space?” She couldn’t. I asked if she could see that it was green. She could. Then I showed her that the whole screen background was green and that it was covered up when she put each piece in place. She was unable to comprehend what I was telling her. Then I asked her to give me her hand. I used her index finger to touch the space. I told her she wouldn’t see the green if she put the piece in that spot. I showed her the piece and asked her to put it in the space. She couldn’t do it.
All the while, I was thinking, “You’ve been doing some variation of this same lesson off and on for weeks. Isn’t it obvious that it’s not working?” That’s why the tweet at the top of this post caught my attention. In addition, I remember and old aphorism. “If you keep doing what you’ve always done, you’ll get what you’ve always gotten.”
I decided to do what I should have done earlier. I redirected her attention, something that is often recommended for caregivers. I reminded her that we had talked earlier about looking at one of her photo books and suggested we do that. She was ready. We looked one of the books for about fifteen minutes before she said she really wanted to look more but was tired. We stopped, and she lay down on the sofa for about thirty minutes before going to dinner. When we got home, she asked what she could do. I said, “How about working on your coloring book?” She liked the idea but had a hard time knowing what to do. She gave up after fifteen minutes and wanted to get ready for bed
So what am I going to do next time? The truth is I’m not sure although I know what approach I will take. Like everything else, losing an ability to do something occurs over a period of time. It comes and goes but gradually fades away. I believe there is still more time for her to enjoy the iPad. I want her to keep trying, but I am not going to be as persistent in trying to teach her what to do. I will look more and more to other options that will be easier for her. I’ll continue to try the coloring book. She has had some minor success with it. Maybe she will catch on to it. I told her there are no rules. She can color any way she wants.
As I have noted before, we are always learning and adapting. There will be more of that in our future.