Tuesday, October 27, 2009

A night out

We drove into Chicago last night, to attend a focus group for early onset Alzheimer's patients and caregivers -- patients in one room and caregivers in another. At the end, the patients came into our room and May's face was aglow. She loves getting together with these people. She searched for the words to express what she was feeling. It came out something like this:
"Is there a way for all of us to ... uh ... do this again ... without any fru-fru (wave of the hands). It's just so good to sit and talk."
Afterward, one of the patients came over and said she and May should get together and ride bikes, so we gave her our phone number. On the way home, I told her what went on in my room, what people had said and what I had said (not much). I described all the people who were there, the ones we knew and the ones who were new to us, and reminded her what each of their stories were. She asked me several times, "What's next?" Each time I explained that this was the second focus group we had been to, but there was no structure in place for ongoing meetings. All in all, a rich and touching conversation for 30 minutes. Two blocks from home, the following Q&A broke out:
"Where did we go tonight?"
"You don't know where we went?"
"No."
"I'm going to ask you some questions. I'm not trying to make it hard on you. I just need to know how your brain is working."
"Okay."
"Can you remember anything about this evening?"
"No."
"Do you know how long we've been out of the house?"
"Two or three hours, I think..."
"Do you think we stayed here in Evanston, or went into Chicago?"
"I think we went to Chicago."
"Do you remember where we parked?"
"In that place that goes round and round."
"Yes, the parking garage."
"Yes."
"It's a parking garage we've been to many times. It's across from what?"
"I don't know."
"It's across from the hospital. We went into the hospital and went to a meeting. Do you remember anything about the meeting."
"You went to your place and I went to mine."
"And what did we do?"
"I don't know."
"We went to a focus group. For early onset Alzheimer's. I went with the caregivers and you went with the patients."
Quiet. Then, hands over face...
"I hate this."

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