I'm not usually tempted to crawl into bed and pull the covers over my head at 5 pm, but it happened today.
It wasn't a bad day really--just a doctor's appointment for Mom and a birthday luncheon for her and my daughter Roz, with a few other errands tucked in the edges.
As we were finishing lunch, Roz ran outside to put more quarters in the parking meter for her car. That left Mom and me and Roz's friend Malina, who is visiting southern California while on spring break from college in New York City with Roz.
Mom was dressed elegantly and her hair had been done on Monday--all in all, a suitable family matriarch, to all appearances.
As we were talking, she mumbled something about a sweet little kitty, I thought. I didn't quite hear it.
"What did you say?" I asked.
"They're afraid I'll show them my sweet little titty," she repeated.
Silence. There we were at the nice seafood restaurant, Mom and I and Roz's nice new friend from Barnard College.
"Disinhibition," I said, finally. "That's an example of what I was telling you about." Fortunately the subject of Lewy Body Dementia and disinhibited speech had come up before in my conversations with Roz's friends over the last six days.
"Oh, I understand. It's not a problem," Malina said.
"I guess I shouldn't have said that," Mom then commented, noticing that something was wrong.
"No, you shouldn't have," I said.
The moment passed. Roz returned, but I didn't mention it to her. She had been so brave, trying to engage her grandmother in conversation.
"How are things at Ocean View?" she had asked. "How are your friends doing?"
"Oh, same old thing--boring," Mom had said. A pretty good answer. But she didn't have much to say to the second question.
I could have explained: she doesn't have any friends. She is surrounded by the same people every day, but none of them has a real capacity for friendship. That would require several abilities: to listen, to retain what someone has said, and to focus their attention on another person's words and feelings.
When lunch was over, I drove Mom back to Ocean View, but I was rethinking her future.
I can tolerate things like wiping her mouth and chin in public or fielding random comments when she tries to participate in a conversation, but I reached my limit today. She is no longer fit for polite company.
From now on, she will be confined either to the floor she lives on or to the immediate family. I'm not sure that grandchildren (except for my own) will be included in that category.
One of the tragedies of Lewy Body is that the patient's mental condition varies from day to day and sometimes moment to moment. Lucid to looney. Unlike persons with Alzheimer's, who talk less and less, LBD people talk as much as ever. They just don't have a functioning frontal temporal lobe, which screens speech and behavior for social acceptibility.
Up until today, my general plan has been to keep her life as normal as possible. I take her out to attend church, to dine at restaurants, to share family parties, and even to attend social events such as P.E.O. I introduce her to my friends and my children's friends.
But I need to cut back. I need to protect myself. I need to recognize that she belongs in an environment where dementia is expected and understood.
The biggest hazard I see on the horizon is taking her to P.E.O. meetings. Because I've already committed to taking her to them, I will give her one more chance, but I will watch her like a hawk. If she makes any mistake like the one today, that will be her last P.E.O. meeting.