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Archive for November, 2007

Thanks to the O’Connor family, we had a burst of media coverage on the issues of love and intimacy in late life, particularly in the case of dementia.   Scott O’Connor told a local reporter that the family was so happy that their father had found love just two days after moving into an assisted living facility.  The national media played it as potential scandal.  See Fox News coverage for a typical scandal sniffer.  But then NPR did a story.  And the New York Times.  Sure, they still called people with dementia “patients.”  But overall, these were some of the best pieces on dementia that I’ve see/heard in the media to date.  And the courage of the O’Connor family is remarkable — they were unafraid to be happy for their father/husband, who after 17 years with Alzheimer’s, has found a bit of peace.  Dr. Piero Antuono and I did a call-in show on Wisconsin Public Radio a few days later.  I was so heartened by the callers, who clearly saw the humanity of the people with dementia and seemed hungry for a more supportive and understanding world in which to experience this disease(s).   Perhaps we’re turning a corner of some sort?

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“What is memory? Memory is a glorious and admirable gift of nature, by means of which we recall past things, embrace present things, and contemplate future things, thanks to their resemblance with past things.”

Boncompagno da Signa, in Rhetorica novissima (in Jacques Le Goff’s History and Memory, 1994)

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Well, at least I think it’s a great book. I’m only on page 22. Stephen Hinshaw’s The Mark of Shame: Stigma of Mental Illness and an Agenda for Change is new from Oxford University Press. I just got it through interlibrary loan and am drinking up his careful distinctions between stigma, stereotype, and prejudice; and between various definitions of mental illness. I’m a little sad because one quick look in the index (I always go there first) shows “almshouses” followed by “ambivalence”. There’s no mention of dementia either. Or aging. I still think it’s going to be a great book. But I’ll just have to extrapolate…

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When people talk or write about care giving experiences, you’ll often hear or read something like this: “I’m the parent now.”  I’m so intrigued by this theme in care giving stories, particularly in cases of dementia and Alzheimer’s.  Do people really see these relationships as the same?  What differences do they ignore?  We have a hard time seeing our parents as full, complex human beings, and we certainly have a hard time seeing people with dementia as full and complex human beings – perhaps when the two overlap, it’s extra hard to push through to have a new relationship, and fully recognize and be with our parents in the moment.

I interviewed the amazing Karen Stobbe for a chapter that I’m hoping I’ll able to include in the book.  She told me a story that spoke to this point.  Karen was an actor (writer/director too) when her father was diagnosed with AD.  She dove into the world, and has adapted her comedy improv skills to care giving.  Stobbe’s mother has now been diagnosed.  One day, Karen had the idea to make “pigs in a blanket” with her mom.  Karen and her daughter Grace went off to the store to gather the ingredients.  It was a generational moment – she and her daughter were recreating a ritual Stobbe and her mother established.  When they got home, Karen proudly announced “we’re making Pigs in a Blanket!”  Her mother looked blank – “what the heck is that?”

Stobbe said it was an important moment for her.  She had to grieve a little for the fact that her mother didn’t recognize a family ritual.  “But it made me see that I have access now to something new – I can learn about my mother not as my mother, but as the person she was before I knew her.”

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