In my previous post, I focused on the inaccuracy of our stereotypes (generalizations) of people with dementia. In this post I am specifically thinking about caregivers and the conclusions we reach about the behavior of our loved ones. Many of those situations involve a judgment about things like what stage of the disease the PWD has reached, what she is able to do, and can she be left alone. Last spring, I was trying to draw a conclusion about Kate’s sleeping later in the morning. I wasn’t sure whether that represented a few isolated discrepancies from her previous sleeping pattern or the beginning of a new stage of her disease. After months, I finally recognized that she was, and still is, making a real change.
One of the judgments that caregivers frequently make involves what their loved one knows. It hasn’t happened recently, but I’ve been asked if Kate still knows me. That’s a good question. It’s one that seems to imply that she either knows or doesn’t know me. The best answer I can give right now is that “sometimes she does and sometimes she doesn’t,” but that doesn’t tell the whole story. Let’s take an example of something that happened at lunch a couple of days ago.
When she got up that day, her conversation suggested that she knew me. She didn’t ask my name or relationship, and she behaved in a manner that is consistent with the way she has behaved toward me for years. At lunch, we talked about our children. I presumed that, at that moment, she knew I was her husband. Moments later she said, “Who are you?” I asked her if she meant my name or my relationship to her. She said, “Your name first.” When I told her, she said, “And what are you to me?” I said, “I’m your husband.” Then she asked me to tell her my “full name.” I said, “Richard Lee Creighton.” She tried to repeat it, but only got the first name. She asked me again. Over the next few minutes, she asked a few other times. Once she asked her own name.
In most ways this experience was like many others we have had. In this particular instance, however, I was struck by how blurry the line between knowing and not knowing can be. As usual, I was also amazed at how comfortable she is when she repeatedly asks my name and her own. She displays no sense of hesitation about asking nor does she seem concerned that I might think it strange when she asks. She asks the way she would ask a stranger’s name. At the same time, her words and manner of relating to me suggest she knows me. I feel certain that is the way an observer at another table would have interpreted the situation.
I try not to quiz her too much about what she “knows,” but earlier this week I did. She asked my name and relationship. I told her, and then I said, “Tell me this. You didn’t know my name or that I am your husband, but you did seem to feel that I am someone you know. Is that right?” She said, “Yes, of course.” I didn’t push for any more. As I have surmised on other occasions, she usually recognizes that I am someone with whom she is familiar and someone with whom she is comfortable. It’s just that she sometimes doesn’t remember my name or our relationship.
After living with changes like this for a while, I would say there are different levels of knowing. One is to know my name. Another is to know that I am her husband. Another is to know that I am someone she recognizes. If I were to guess right now, I would say that (1) she usually doesn’t know my name, (2) about half the time she knows I am her husband, and (3) she almost always recognizes me as someone she knows and trusts.
Prior to six months ago, I believe she always knew my name and that I am her husband. She’s made a significant change in that time period. I suspect the next six months will bring more dramatic changes, but I expect she will continue to recognize me as someone she knows and trusts for some time to come, at least that is what I am hoping. I’m also beginning to think of that as the deepest kind of knowing. It’s similar to what we felt when we first met. We didn’t know anything about each other, but our intuitive abilities led us to sense a connection. That is something I don’t want to lose.