On any given day Kate may express confusion, clarity, sadness, and joy. My own emotions vary a lot as I observe each of these things. That was true on Thursday of this week, but, overall, it was another good day.
Kate has always been a little slow to wake up. As her Alzheimer’s has progressed, she has been more confused. As we move through each day’s activities, she improves. I often find that she is at her best in the afternoon and evening. I have a thought about why. I have been using the pixels on a computer screen as a simile. When we look at pictures on the computer they look beautiful. That’s because all the pixels are working as they should. Let me explain how I apply that to Kate’s behavior.
Let’s take a step back. Remember tabula rasa (the idea that we begin life with a blank slate)? Upon birth babies immediately begin to fill that blank slate. The more experience and education we get the more we fill the space. To me that’s like adding pixels. For many reasons, some people have more pixels than others just like our electronic devices. The “pixels” in the brains of people with dementia are damaged. At first, it’s just a few that are not working, but ultimately virtually all of those pixels that relate to our rational abilities fail to work as they did before.
If I extend that idea to Kate’s behavior during a day, I would say that upon waking many of those pixels are not working well. As she wakes up and engages in more activity and conversation some of those pixels begin to work again. They may or may not work perfectly, but they work sufficiently to enable her to function reasonably well. Toward the end of the day they work best although she sometimes experiences overload. When that happens, she is confused again. With this in mind, let me take you back to Thursday.
I got up with her a few minutes before 6:00 to go to the bathroom. She went back to bed, and I got ready for the day. She got up again at 9:45 and went to the bathroom. I thought she might want to get up, but she wanted to return to bed. At 11:00 when I went back to see if she would like to get up, she was awake. This time she was ready to get up. As I was helping her dress, she asked if I were her daddy. I said, “Would you like that?” She smiled and nodded. I said, “I’m your daddy.” Then she asked, “Where is my mother?” I said, “She’s in Fort Worth.” She asked her name. When I told her, she said, “She was a nice lady. People liked her.” I agreed. I can’t say what was going on in her head at the time, but she was confused. It seemed like she must have been wondering why her father wasn’t with her mother or where she was if her mother was in Fort Worth. That made me wonder if I was wrong about telling her that I was her daddy.
Just before leaving the house for lunch, she said, “Yes, Daddy” when I told her I needed to put some drops in her eyes. I didn’t say anything. Once we were in the car, she said, “Are you my daddy?” I hesitated a moment and said, “Would you like me to be your daddy?” She said, “I can see you’re not going to tell me.” Then I said, “Would you really like to know?” She said she would, and I told her I was her husband. She is frequently surprised at this news, but this time she appeared shocked. My immediate thought was “Richard, you’re causing more problems than solutions.” It reminded me of what I’ve heard so many times. “Once you tell a lie, it leads to other lies.” I felt the deed was done and didn’t back away. I told her that we had met at TCU, fell in love and married in 1963. She remained confused for a couple of minutes (maybe less). Then she had forgotten. She called me daddy one more time before we got to the restaurant. After that, I had a sense that she knew that we were married. In fact, one time she said something about our being together a long time.
Once we were home, I picked up one of her family photo albums. This was one that focused on her mother’s family. It had been a while since she had looked at it, and she responded enthusiastically. I looked over her shoulder as she went through a large portion of the album for almost an hour. I was pleased with two things. First, it seemed like she was showing less confusion as she went through the album. It was as though the accumulated impact of seeing the large number of pictures of people and places from her past was rekindling the connections in her brain. To me it was like lighting more pixels, but not all the connections came back. It was mostly her feelings and not the facts. For example, she still had trouble remembering people’s names and recognizing them as we went from picture to picture.
That night we went to Casa Bella. It was an unusually good night of music from Broadway. She loved the music and the two singers and expressed her pleasure audibly. This was one of those times when I wonder if anyone finds her audible reaction unpleasant. I don’t think so. They were noticed, however. At the end of the evening, the man seated next to me said, “This was a really good night for Kate.”
It was not just her pleasure that I thought was striking. She also seemed quite alert and happy. She didn’t seem like the same confused person she was earlier in the day. It was like all those pixels were charged up and working well. Of course, they weren’t. Alzheimer’s has damaged her brain so much that at this point there is never a time when everything is working, but I am thankful for those moments when it appears to me and to others that they are.