Twenty years ago when my mother was living with dementia, I recall someone’s saying, “Well, at least she doesn’t know.” That was meant as a word of comfort suggesting that she would not have to experience the mental anguish that can accompany the disease. At the time, I felt that wasn’t right. I remember how frustrated she was when she couldn’t remember things or do things that she was once able to do.
I’ve had much more opportunity to observe Kate, and I have confirmation that I was correct. During the last stage of the disease, people may not be aware of their impairment. For most of the way, however, they are quite aware of many things including their own failings.
Next Tuesday, it will be 7 years and 8 months since Kate’s diagnosis. She is still aware that she is unable to do all the things that she used to do. I don’t have to look far for examples. I checked on her a little before 9:30 and discovered that she was just getting out of bed. I was pleased since she has been sleeping much later. I went back to the kitchen without disturbing her. She likes to wake up slowly, and I thought it best not to rush her.
At 10:00, I went to our bathroom to brush my teeth. I noticed that she had picked up the clothes that I had laid out for her last night but left the top on her chair. At the time, she was in her room. I took the top to her. She was concentrating on her clothes, trying to make sure that she had everything she needed to wear before she got in the shower. I asked if I could help. She said, “I need something to wear.” I told her she had just about everything but a top and that I had it. She had laid the clothes out on her bed. She had the pants I had put out for her and an additional pair. Beside them she had one sock. She realized she didn’t have everything and was trying to figure out what else she needed. After I walked in, she decided to lay out her clothes on a chair next to the bed. She was confused by the fact that she had two tops. I told her I would take one of them and let her wear the other. She took one and put it on the chair. I started to leave the room, and she asked me to wait. She wanted to do this herself, but she wanted me there in case I she needed me. It took her a long time to do this. When she was finished, I said, “You’ve got it.” She gave me a doubtful look and said, “We’ll see.” She, too, knows there are times when she thought she had everything together only to discover she was wrong.
It is painful to watch her work so hard on what we would think to be a simple task, but I still like to give her a chance to do as much for herself as she can. She seems to appreciate this. One thing I do know. She does recognize she can’t do what she used to do, and it bothers her. There will no doubt be a time when she doesn’t.
