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Sunday, February 26, 2006


Update on how Mary Lee is

I saw Mary Lee earlier today and thought I'd let readers know how she's doing. Essentially the description I gave in the first post still applies, only more so. Her mind is as sharp as always and she can hear perfectly well, but her motor control has worsened including her speech and her ability to eat. I'm not sure how her vision really is, but she does watch television and her DVD player. She's sleeping even more now as she tires more rapidly.

She is extremely frustrated with the difficulty of communicating. Today I was trying to understand something she was trying to tell me, and I could tell that it was something simple but I just wasn't getting it. At one point she said (and this I understood clearly) "this is stupid!" I agreed that it was, and in a little while finally managed to figure out what she wanted; she had to spell out a key word for me because she couldn't say it clearly enough for me to understand it. I apologized for being so dense and said I would get the hang of it (hoping that I would).

The trick to communicating with Mary Lee is to set the context yourself and then you have a chance at understanding what she says. Yes-and-no questions are the simplest example. At one point the nurse asked her whether she wanted the TV on and she said yes, and then asked "what channel?" and Mary Lee held up three fingers and then one finger, meaning channel 31. That was a smart thing to do because if she'd said "thirty-one" we might not have had a good chance of understanding it. She can often pronounce words more clearly if she puts more effort into it, but she's weak, and in addition thinks that the whole situation is ridiculous. So she may repeat something more carefully and have it be understandable.

I cried today while visiting her, for the first time. For some reason I said "it's not fair" and she said (and I was able to understand this without trouble) "Life is never fair."

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