This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.


Sunday, October 19, 2008

The New Normal

One of the concepts that struck me at the Well Spouse Association meeting is the idea of a new normal. I didn’t even go to the workshop with that title, but the phrase has stayed with me. I think I’m imagining some stability, and in the long run I’m not going to get that. But I still see some peace in thinking “this is now what’s normal for us.” This isn’t (or isn’t only) a strange and scary place, it is where we live. That’s very similar to the famous meditation for people with children with disabilities called Welcome to Holland. How to be here, in this unexpected place? There were people at the conference who had been well spouses for 20 or 30 years (mostly with spouses with Multiple Sclerosis). Caregiving is a place people live, not just one they visit in a crisis.

How to settle down to living here? I wonder if it is possible to sit down and discuss with John what he can do and what I will do. I will take care of finances and family plans and remind him of those things. I will go to doctor’s appointments with him. When he asks me to, I will take over his bills and organizing his medications. He is responsible for his things and for the day to day matters of his health, such as exercise, and for finding the things to do that make his life worthwhile.

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