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 12, 2008

Families and illness

I'm reading Families, Illness, and Disability by John S. Rolland. It is written for professionals, not for families, but I am finding lots of useful ideas. The first part emphasizes previous experience and family patterns, which I was already realizing. John's thinking is very much shaped by the death of his parents, mine by my own experiences of the death of my fathers and my grandmother, as well as having a sister with a cognitive disability.

The interesting immediate example of family patterns is that this weekend my mother was more positive about John, now he is ill, than she has been in the past. She and John went and picked raspberries while Elizabeth and I worked on her laundry.

What I like best in the book is not the theory but the case studies and the questions that Rolland suggests asking families. For example, in the chapter on intergenerational patterns he suggets asking families about previous experience, about:

What would they want to do similary or differently? Are there aspects of the current situation that they feel confident, insecure, or terrified about?

I feel terrified that at some stage John will want my attention constantly. But the book is helping me see that now is the time to make a transition from the crisis (or at least acute adjustment) stage to an early chronic stage where I have a last change to pursue my own goals while I still have the opportunity and can encourage John to have as much autonomy as possible and take responsibility for his own choices.

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