FYI Daily

Alzheimer's Insight on PBS: "Embrace the Sublime Chaos"

Last updated: Mar 29, 2012

Organized Chaos

What does life with Alzheimer's look like from the inside? By that I don't mean from the perspective of a caregiver seeing it up close, but by the person who's actually living it. A powerful new documentary about Alzheimer's appearing on PBS stations -- "You're Looking at Me Like I Live Here and I Don't"-- attempts to answer that question. The result is a presentation of Alzheimer's like none that have come before. (Check local listings, since air times vary.)

The film follows Lee Gorewitz, a woman in her 70s with advanced disease, at the Traditions Alzheimer's Unit in Danville, California. Filmed over six months, it captures her inner universe -- frustrations, communication breakdowns, disinhibitions, kindnesses, cruelties, and a candor that borders on the poetic. (On love: "That's a damn good thing to work with." On her deceased husband: "How do I even say it? The air -- was very good.")

Producer-director Scott Kirschenbaum had intended a completely different film about Alzheimer's, to be made from a script he'd created, he writes in Huffington Post / Arts: "With the exuberance of a cruise director, Lee presented herself as a staff member [the first time he visited], took my hand, and gave me a tour, during which she delivered a soliloquy unlike anything I had ever heard before: For well over a minute she prattled on about purses, windows, and gardens, before she eventually locked eyes with me and said, 'I hear the song in my ears, and I think they don't love me anymore.'

"From this spontaneous word-salad came two things that forever altered my film project," he writes. "I realized Lee was not staff, but a resident. And, I decided, her presence in the unit was reason enough to throw away that screenplay I'd just written."

Instead, he simply recorded Gorewitz's world as seen through her disoriented eyes. "Who should say that her fragmented reality is any less valid than my own," he asked himself.

Though not her caregiver or even a family member, he nevertheless experienced an insight shared by many families struggling with a loved one who has dementia: "A shift happened for me when I started to embrace the sublime chaos of Lee's world," he writes. "Spending time with her became not about remorsing [sic] on what will never be, her past (most of which she cannot remember) -- nor was it about analyzing the tragedy of her plight.

"It became about letting Lee tell her own story, one unfolding in the context of a cruel, debilitating disease. And it became about learning that there was no reason not to let that story seem beautiful."

Image by Flickr user Urban Woodswalker, used under a Creative Commons license.