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Chris and his grand-daughter

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Chris Lightfoot MA, FRIN

By Jane
Posted on

I had the conversation with my spouse.

Chris had a diagnosis of Multiple System Atrophy in June 2014, after 5 years of autonomic failure symptoms. His neurologist – who was a great ally in all other respects – did rather dissemble about life expectancy. When asked whether the 6-9 year average started from onset of symptoms or from diagnosis, the neuro told Chris that it was the latter. This led Chris to tell his sons that he was going to live for years. He was dead within 2 years, which didn’t take me by surprise but sure as hell freaked his sons out.
The story: we didn’t often talk about End of Life stuff, but I was conscious that his speech was fading, and my big fear was that C would not be able to tell me if he was in pain, or where it hurt.
I found it very hard to initiate the “what-if” conversations, but he wasn’t going to do it. The last conversation we had on the subject was about 2 weeks before he died: he said he hoped it wouldn’t go on too long, because he wanted me to get on with my life; I said that I also hoped it didn’t go on too long, because I didn’t want “living” to turn into “supported existence”.
I still wasn’t ready when the end came, though.

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