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Dementia, From the Inside

Scott Kirschenbaum’s new film, “You’re Looking at Me Like I Live Here and I Don’t,” was supposed to be scripted and cast — a coherent story with a beginning, a middle and an end. Then he found his unlikely star: Lee Gorewitz, 78, who lives in dementia unit at Reutlinger Community for Jewish Living in Danville, Calif.

They met one day in 2009 as Mr. Kirschenbaum arrived at the facility, which was to be his setting, on a scouting mission. Fit, well-coiffed and made-up, in earrings that matched her baby blue jogging suit, Mrs. Gorewitz greeted him at the door and was eager to show him around.

But as she walked through the facility, he recalled in an interview, her tour made less and less sense.

“Windows,” she said.



And eventually: “I hear the song in my ears, and I think they don’t love me anymore.’’

Mrs. Gorewitz was vivacious, energetic, charming and “trying her darndest to communicate with me,” Mr. Kirschenbaum said, but the “gap between her thinking and speech’’ was cavernous. The head of the unit called Mrs. Gorewitz’s way of communicating “word salad.”

But the 31-year-old filmmaker knew that telling the story he wanted to tell, of living with Alzheimer’s from the inside out, meant “working with an unreliable narrator.” It meant giving up on the idea of a linear plot. It meant entering a fragmented reality where “emotional coherence had replaced intellectual coherence.’’ And so Mrs. Gorewitz, with her family’s wholehearted support, became his muse.

The result is a strange and transfixing television experience, shot over the course of two weeks in April 2009. It will air on PBS stations on March 29 in Chicago, Denver and San Francisco; on April 1 in New York and Los Angeles; and on April 6 in Washington. (Viewers should check their local PBS listings.)

Until now, screen depictions of dementia mostly have been told from the perspective of the caregiver. Mr. Kirschenbaum, never seen in the film, is heard only a few times, in barely a whisper, asking Mrs. Gorewitz questions about her late husband, children, favorite color, the identities of people in the photographs in her room, the recipient of a birthday card she had saved, what she wore to her wedding, the meaning of love.

Mostly, the camera follows her wanderings through the unit, her interactions with other residents and staff, her sudden swings from conviviality to despair to anger. We hear the background noise and conversation, if you can call it that, of residents and aides. Family members are never in the frame. We are there only to the extent Mrs. Gorewitz is. What she cannot tell us, we don’t know.

She rails at her grown children, who visit with some regularity; her grandchildren have decorated her room with photos and mementos. That birthday card was meant for her, it turns out, but she can’t figure it out.

Displaying her “wedding dress,” she holds up a lavender blazer of recent vintage. Of her late husband she says, “How do I even say it? The air’’ – she pauses – “was very good.’’

And the meaning of love? She is silent for a long time, licking her lips. “That’s a darn good thing to work with,’’ she says.

In the corridors and lounges of the unit, Mrs. Gorewitz dances and snaps her fingers when the tape deck plays “Billy Boy’’ or Frank Sinatra sings “Somewhere, Beyond the Sea.’’ She soothes an old woman curled in a wheelchair cradling a doll in her arms. She kicks an old man, also in a wheelchair, and blurts out at him, “You’re going to die.’’ He responds with a jaunty wave.

In one scene, she lies curled in a fetal position on her bed, with its blue flowered comforter, keening, “I don’t know why. I don’t why I do what I do.’’

At the end of each day’s shooting, Mr. Kirschenbaum recalled, Mrs. Gorewitz kissed him goodbye, tearing up at their parting. He had become family. “There is no such thing as enough when you are that sociable, confused and lonely,” he said. “The fundamental struggle is how to make do with the social dynamic available to her.’’

Mr. Kirschenbaum has some background in the subject matter. His grandfather, 100, lives in a Rochester nursing home; his 93-year-old grandmother is three miles away, in assisted living, and visits her husband a few times a week. At Yale, he made a documentary about the role of Jewish humor in the lives of 15 nursing home residents. He wrote profiles of the elderly for the Yale Journal for Humanities in Medicine. Later, living in New York, he answered an online ad for a companion for a screenwriter with Alzheimer’s disease. The pair spent every Wednesday over muffins and coffee.

The title of the film is simply something Mrs. Gorewitz said one day, sitting at the edge of her bed, not far from tears and playing with a bunch of small stuffed animals. He didn’t ask what she meant.

Posted in Alzheimer's and Dementia Care, Perspectives on Alzheimer's, Resources on October 23, 2012

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