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.


Monday, October 27, 2008


John and I met with the therapist and John said he feels I don't communicate with him. I said it hurts to ask him for input and not get it, so I tend to give up asking. We added a category to the list I started--things that are his responsibility (all but one are things that are about him only), things that are my responsibility (what I've put on the list is family responsibilities), and the new category is things that we do in partnership or share responsibility for. Cooking is on that list, not that we do it together but we take turns (week by week).

I asked John if he would share responsibility for Christmas and he said something that sounded to me like "if you tell me what to do." I said I would be glad to discuss issues, but I didn't count it as sharing responsibility if he waits for me to bring the subject up, decide what needed to be done, and tell him what to do. He said he would try.

I'm not sure any of this is going to work. But I think it is worth a try. In Families, Illness, and Disabillity, John S. Rolland writes that

Both partners need to realize that sustaining intimacy depends largely on establishing viable caregiving boundardies. Even the strongest relationships are strained by the ambiguities and discrepancies in shifts between two forms of relating: patient-caregiver and equal partners.
And that: "one of the key tasks of the chronic phase" is "maximizing autonomy for all family members given the constrains of the disorder." (pp. 245, 247)

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