In the past I’ve suggested that it is hard to predict exactly what lies ahead in our future. That is true for everyone, but it seems to be especially noticeable in the lives of people living with Alzheimer’s. It certainly is for us. I was reminded of that around 6:30 this morning. I had just gotten up and entered our bathroom when I heard Kate say, “Hey.” I opened the bathroom door and saw that she was sitting up in bed looking at me. She looked as if something were wrong. I asked if she were all right. She said, “I don’t know. I want to go to the bathroom.” She was shaking and uneasy on her feet. She held my hand most of the way to the bathroom before she felt secure enough to let go. On the way, she asked, “Where are we?” I told her we were at our own home in Knoxville.
When she got up from the toilet, she wanted to brush her teeth. As she walked to the sink, she said, “I’m not myself.” She repeated that several times over the next few minutes. She finished brushing and said, “I’ll be glad when this is all over.” I’ve heard her say this several times in the past and don’t know what she means. I’ve asked before though not this time. She always says, “You know.” Over the next few minutes she said, “I’m not myself. I don’t know what’s going on with me.” I can’t remember what it was, but she said something else that was a clear recognition that something is wrong with her.
I took the approach of comforting her without any attempted explanations. When she said, “I’m not myself,” I said, “I can tell that, but I want you to know that I am here to help you. I will always be with you.” We walked back to the bed. I helped her in. I told her I would stay in bed with her. She said, “Oh, good.”
For the next forty-five minutes, we lay in bed facing each other. She wanted to hold my hand. We spoke very little. She asked my name one time. I said, “Richard. Richard Creighton, and I am your husband. You are Kate Creighton, my wife of almost fifty-six years.” She looked puzzled but didn’t say anything. In a while, she said she was feeling better. When I could tell that she was asleep, I got up. She is still sleeping as I finish this post.
These attacks and milder experiences of knowing something is wrong remind me of my mother who had dementia. I remember so well her saying, “I don’t know what’s wrong with me. I can’t remember anything.” I also recall times when I’ve heard people say, “At least, she doesn’t know.” I’ve realized all along that people with dementia often know that something is wrong even if they don’t know what it is. And it bothers them. What I didn’t expect was that Kate would have these experiences so late in her journey. At this point, I doubt that she has a concept of Alzheimer’s or dementia, but she is able to tell that “I’m not myself.” Those are the moments that are hardest for her. They are for me as well.