What's going on...

I started this journal as a way to keep track of how the condition was progressing. I wanted to have an accurate answer if a doctor should ask me, "And how long has such-and-such been going on?" Later, as more and more people would ask, "How is May doing," I started giving out the address of this site so I didn't always have to be talking about the latest episodes. And then I reached a point where I just didn't want to write about it. For thing, I realized that no doctor was ever going to ask any more questions. It doesn't matter when a certain symptom showed up, and there's nothing to be done. Plus they're never going to guess at the one thing that would enable you to plan for the future: how much time do we have?

So for everyone who wants to keep up, let me just say this:

Every two or three days, we have an outbreak of belligerence, consistent with the symptoms of Sundowner's Syndrome. Out of the blue, she'll say things like this: "I take care of all these little boys. I cook for them. I dress them. I wash their clothes. I make sure they have a place to sleep. And I can't see that you're even lifting a finger to help." Or like this, "I don't know what right you have to keep me here when all I want to do is go home. I miss my friends. I'm not sure when you came or how you got here, but you have no right to keep me here when I just want to be back in Oklahoma."

Also, four or five nights a week, she gets up shortly after midnight and stays up the rest of the night. She goes into her closet and moves clothes around for five or six hours sometimes. When I get up at 6, she expects me to take her to lunch. She's astounded when I tell her it's 6 in the morning.

During the day, she falls asleep anytime she slows down. She falls asleep with a cup of coffee in her hands and dumps it all over herself, she falls asleep in restaurants waiting for food to come, she asks me a question and falls asleep before I can answer.

She has trouble making a sentence. The words just aren't available to her.

She gets very anxious if she can't find Adam. He went to a birthday party this week and she repeatedly came into my work space to say "I can't find Adam" or "Do you know where Adam is?" Explaining that he's at a birthday party doesn't help. She wants him where she can see him.

If I'm not here to put food in front of her, she doesn't eat. (I have help in the house now, so she's not alone if I have to meet with clients.) One day last week I left home at 7 in the morning and got back about 3. She said she didn't feel good. I asked if she had eaten lunch and she said no. That may or may not have been true, but the odds were that she hadn't eaten lunch or breakfast. I made her a sandwich and immediately after eating it she said "Oh, I feel so much better!"

She puts dirty dishes into the dishwasher with clean dishes, then comes back in a few minutes and unloads the dishwasher. So you find dirty plates and utensils put away with clean ones. You learn to inspect the tines of your fork.

She often thinks her dad is here. The other day she walked into the kitchen while I was cooking a veggie burger. "Is that for Dad?" she asked.

That's basically it for now. I'll continue to write, but probably not as frequently. You might want to check about once a month.