A few days ago, I saw the following tweet by @ThePurpleSherpa.
There’s a tragedy narrative that often accompanies dementia, and there’s certainly enough loss and sadness to make the tragedy real. But what if, without denying the reality of loss, we look at what remains instead and focus our energy there?
Her tweet was accompanied by a graphic that said, “What if, instead of living in the tragedy of dementia, we live in the possibility that remains?”
I share this view and have tried to live by it since Kate’s diagnosis. I also believe it has paid off for us. Kate has tried to live this way as well. Most of the time she has been successful.
As the tweet above suggests, there is no denying the “tragedy narrative that often accompanies dementia.” I see that most often when she wants to know the names of people, places, and objects around her. It also happens in conversations when she can’t understand what people have said. My view is that her intuitive side still wants to know about the world around her. I would say it is part of a natural curiosity with which we are born. Kate and I are fascinated at the eagerness of little children to explore the world. Every parents knows they are like sponges in quickly taking in everything they can. Kate has lost most of her rational ability and along with that all the knowledge she has accumulated over a lifetime. Like a little child, she still wants that knowledge. So she repeatedly asks where we are, who I am, who she is, and what is said in conversation.
Sometimes she is somewhat concerned about “not knowing.” She expresses this when we are about to meet friends by asking and rehearsing their names. It occurs in restaurants when she forgets that I take care of ordering, and she repeatedly asks what she should order. She routinely asks, “Whose is this?” when she wants to take a sip of her iced tea or water.
Each of things represents a minor problem for her, but the other night she was quite concerned about voting. This came up after we returned home from Casa Bella. As I was getting ready to take a shower, I turned on the latest debate among the Democratic presidential candidates. I would have turned it off when I showered, but Kate was watching. I felt sure she wasn’t understanding what she heard, but I left it on anyway.
When I got out of the shower, I heard her call me (and by my name). She said, “I need your help.” I told her I would be with her as soon as I dried off. When I reached her, I discovered that she couldn’t understand what was going on in connection with the debates. She was very concerned, almost disturbed, because she felt the need to understand before voting. I told her there were a lot of candidates now, that it would be a long time before she would need to vote and at that time it would be much easier to decide. For the next 5-10 minutes she continued to be concerned. She kept telling me she didn’t understand and didn’t know for whom to vote. I tried to reassure her that it was still early and most people weren’t sure who they would vote for. In a few minutes, I turned off the TV, and we went bed. She didn’t express any further concern.
Several times before, I have talked about the interaction of rational and intuitive thought. They are not completely independent of each other. One of the tragedies of dementia for Kate is her intuitive desire “to know” things that her rational thought cannot process. That’s not unique to her. I have heard many caregivers talk about the same questions that are repeated over and over by their loved ones. I find it helpful to focus on the struggle the person with dementia is having. They want to know something they can’t remember. That keeps me from being annoyed about repeatedly giving the answers. In fact, I don’t look forward to the day when Kate doesn’t ask, “Who is that?” when she sees the mug shot of Frank Sinatra at Andriana’s every Sunday. That will be sad marker on this journey.