Sundowning

Sundowning, or sundown syndrome, is a common term used to refer to the agitation, anxiety and confusion that affects many Alzheimer's patients. It occurs later in the day and can continue into the night and even make sleeping difficult. My grandmother has not escaped this part of the disease. I try to keep my visits between ten a.m. and two p.m. Yesterday my visit, which included my mother and all three of my kids, began at four p.m. I knew this would not be easy.

I can remember the exact moment when I knew that my grandmother was in trouble. I remember the phone call when I felt like the wind had been knocked out of me. When I hung up the phone and cried and called my mother. It was one night in February, almost a year and a half ago, when I had called my grandma and asked her what she had for dinner. It was a common question for us, talking about meals and what we had cooked or would cook the next day. This time when I asked her what she had for dinner she said she didn't know. I was confused how she didn't know, she always ate at five thirty. She then asked me what time it was and I told her seven. Seven at night or seven in the morning, she asked. I felt a real sinking feeling. It's night time gram, I told her, you must have dozed off in the chair. I made light of it with her and immediately called my mom when we hung up.

Summertime makes my weekly visits become every two week visits, which is why I had to squeeze in a visit with my kids in the afternoon. She was disturbed by the noise the kids made and she was afraid they could get hurt if they ran in the hallway. I wore a dress and put my hair up but she didn't seem to notice. She was intent, as she always is, on brushing the kids' hair. She wasn't able to locate her brush and that upset her. She didn't want to see the movie showing after dinner because she claimed she'd already seen it (even though she didn't actually know what movie was playing, she was certain she'd seen it).

I left the nursing home feeling a little sad and defeated. And guilty. I get frustrated when she doesn't behave the way I want her to. Some of the other residents who always sit by the nurses station, tucked into their wheel chairs in homemade sweaters, are sweet and always smile at me when I come in. They sit together. I want that for her, rather than passing the hours and days sitting in her room alone doing jig saw puzzles. But it's not for me to decide how she lives what's left of her life. All I can do is keep showing up. And love her. That's it.