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Susan Shifrin, Founding Director of ARTZ (Artists for Alzheimers) Philadelphia, recounts the following powerful learning experience in her chapter, “The Museum as a Site of Caring and Regeneration” in The Caring Museum:
The centrality of imagination in the lives of people living with memory loss forms the crux of a story presented on the radio show This American Life in 2014. During the second act of an episode titled Magic Words, we hear the account of Karen Stobbe and her husband Mondy as they “search for a new way to talk to [Karen’s mother Virginia], looking for some magic words to say to her mom as her mom is losing her memory, words that will keep them connected.” The three live together, their communal lives shaped by Virginia’s diagnosis of Alzheimer’s Disease.Karen describes her yearning for a structure within which she would be able to maintain meaningful communication with her mother. “I had this moment where I Googled the rules of care giving for someone with Alzheimer’s. I wondered, for some reason, if they were even out there… And when I read one of them that said, literally, step into their world, I went, bam.” As the reporter narrating the story tells us, “step into their world” is a mainstay of improvisational comedy. Karen and her husband are both improv comedians. “You walk on stage, another actor says something, and you step into their world, whatever world they’ve just created. You don’t ever say no. You don’t question their premise. You just say yes. And…” The world of dementia, Karen realized, is “a whole ‘yes, and’ world.” Conceived in this way, the strategy of “stepping into their world” is not one of placating or patronizing the person with dementia. It is one of respecting, dignifying, and engaging with the power of imagination. When Virginia Stobbe and her son-in-law share an extended conversation about the monkeys Virginia sees outside the window – when Mondy proposes that the monkeys be invited into the house providing they are appropriately trained and given pants to wear, and Virginia laughingly admonishes him that monkeys can’t be brought into the house – they are connecting through shared imaginative experience. The fact that that experience was initiated as the result of hallucinations brought on by dementia becomes secondary to the enjoyment and mutual engagement of stepping into each other’s worlds.
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July 29, 2016
Karen, you are so right. In re-reading the passage highlighted here, I found myself thinking “WHAT was I thinking when I used the term hallucinations?!” So my apologies for the ineptitude. And I couldn’t agree more that as you say, “Persons living with Alzheimer’s are acting more normal than we are sometimes.” I so appreciate your perspective and your work to release the rest of us from our stigma straitjackets through the insights of improv. — Susan
April 09, 2016
Hi Susan- Thank you for writing about the NPR episode we were featured in. I want to just say that my Mom is not having hallucinations, in fact for the most part people with Alzheimer’s do not have hallucinations, but are just simply making sense of the world around them. See we have this crazy bamboo here in North Carolina and if you didn’t have great eyesight and saw an animal leaping from swaying bamboo to swaying bamboo I bet you would think it is a monkey. and that is exactly what she thought. Persons living with Alzheimer’s are acting more normal than we are sometimes. Take care – Karen
November 10, 2015
Can’t wait to read more of this chapter!
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