My Demented Mom

5 million Americans suffer from Dementia. My mom is one of them. A site for young adult caregivers struggling and coping with "the long goodbye."

Lee applying lipstick
Photo by: Phillip Maisel

Media often plays it soft when it comes to the portrayal of Alzhemier’s disease on TV shows, in the news or in movies………..… that is, they skirt around the complexities surrounding the disease, the emotions, the financial implications, the long-term toll…………. Sure, some works are more adept than others at portraying the effects of dementia………. The short film, My Name is Lisa, hit on some of the more brutal realities of the disease, specifically, the toll on children…………..… Others, well……………….. The TV show Raising Hope superficially touches on it — sort of — with its character Maw-Maw………. of course, her senility is used to get laughs. The movie The Savages annoyed me more than anything else………”irreverent, hilarious”……….. not so much. Away From Her was a beautiful film, but, for me, it was too easy — the character with Alzheimer’s chose to move into a nursing home and her adjustment was, for the most part, seamless. The movie actually left me feeling worse about my own situation………. Why can’t my mother be like her? Am I doing something wrong? God, I wish my mom were like her…….

The truth is, dementia is a hard story to tell. It isn’t a sexy story. There are no survivors, so no happy endings. Alzheimer’s disease and other dementias are incredibly grotesque…….. twisted……. disturbing………. and until we start having an honest, more mainstream conversation about dementia, it will continue to be the disease that gets swept under the rug…………… Let’s face it, no one really wants to talk about “that.”

Until now. Documentary filmmaker Scott Kirschenbaum does talk about “that” in his film, You’re Looking At Me Like I Live Here And I Don’t premiering on PBS’s Independent Lens Thursday, March 29 at 10-pm (check local listings).

That title pretty much sums up this beautifully poignant yet jarring documentary about a woman named Lee Gorewitz who lives at the Traditions Alzheimer’s & Other Dementia Care Unit at the Reutlinger Community for Jewish Living in California.

Kirschenbaum doesn’t do much talking. He doesn’t hold your hand throughout the film. He doesn’t make you feel at ease.

In fact, when the film opens, you can’t help but feel disoriented, even confused because you’re given no sense of direction, but then, that is his point…………….. and then you meet Lee.

Charismatic, delightful, even poetic, Lee takes your hand and guides you into her  world…………. a world of disconnected, fleeting memories………….. a world she’s trying to piece together and navigate in her own way. Lee has Alzheimer’s disease and this is her story…………. a first-person account. We don’t hear from her family, her friends or her doctors — Kirschenbaum did that on purpose. “It needed to be wholly about Lee’s present-day existence within the walls of the Unit.” Watching Lee tell her story is humorous, exhausting and heartbreaking all at once…………… to watch this woman quizzically stare at family photographs, to read a card addressed to “Mom” and not realize she IS mom, to watch her dance and smile, only to later tell another resident that she’s going to die……………..

Kirschenbaum refuses to sugar coat the disease.

We see Lee as she is…………… Kirschenbaum sums it up best: “In the span of minutes, Lee would morph from pensive thinker to gregarious helper, from bubbly mover-and-shaker to morose and sometimes cruel instigator.” His decision as a filmmaker to leave the grotesque intact is brave. As an outsider, it’s often difficult to understand what the individual goes through — as well as their family — until you have witnessed these unsettling scenes unfold.

Lee is a remarkable woman……………. you can’t help but fall in love with her………… you can’t help but want to reach out and comfort her, laugh with her, cry with her……. And despite everything, she’s resilient…………. or maybe she knows she doesn’t have a choice…………… this is her life and she must keep going……………. even as the walls are closing in on her.

“Widowed, cloistered, and slowly undone by her inability to think or speak clearly, Lee has every reason to succumb to the expectations of her conditions. Instead, she defies despondency. When she breaks down, she rebuilds. When she loses words, she summons emotions. And, despite the small defeats of her efforts, she remains an exceptional and resilient soul.”

I talked to Kirschenbaum about his remarkable film below:

There’s no narration. Why did you decide to let Lee tell the story?The goal from the onset was to place the viewer in Lee’s world — in this time of her life — and not rely on her past or someone who lives outside the Alzheimer’s Unit to tell Lee’s story. I wanted to let Lee communicate to the audience. I think, in essence, there is a narrative but it’s not a conventional Hollywood narrative. This is the fragmented reality of Alzheimer’s. There was a method and strategy as to how the scenes were oriented, one after another — as an Alzheimer’s odyssey.

You show the grotesque in your film, which is unusual… why did you decide to go there in your film?
For me, I know if I’m going to explore an Alzheimer’s unit in earnest, the entire continuum of emotions needs to be evidenced in the final film. Just as integral to showing Lee telling a joke in front of a caregiver was showing the most painful images that occur in Alzheimer’s unit. I want the audience to see that there’s a great deal of humanity and to be fair to what actually occurs in that environment, so audiences can be clear on what this world is, so they can hopefully connect with this world on a human-to-human level.

Has this film changed your view on aging?
As a filmmaker, I’m trying to explore difficult and challenging environments. I feel more connected with life and living by making films more than any other work. There was a sense of urgency in making this movie … I know about the emotion and the psychological impact its had on me. I feel a sense of gratitude that I was allowed to make this movie, to befriend Lee and the other residents, and was allowed access to this beautiful and depressing world. I want to be someone who has the capacity to hold space in my life for these kinds of relationships.

You said you wanted to target younger people with this film… Why?
The entire film crew were in their 20s and 30s, so as a young group we wanted to go there… I know some of the most impassioned advocates for Alzheimer’s awareness are young people and I wanted this to be a film that they can rally around and be excited about. In my dream scenario, this movie is for all age groups. This is a reality. Alzheimer’s is not going away. It’s worth everyone’s time to experience this… to get comfortable going to an Alzheimer’s unit or nursing home and trying to connect … We should not ignore our elders no matter how debilitated they are or difficult their situation is.

You’re Looking At Me Like I Live Here And I Don’t will air on PBS’s Independent Lens this Thursday, March 29 at 10-pm (check local listings).

One thought on “Alzheimer’s Documentary Sheds Light on Disease… OR You’re Looking At Me Like I Live Here And I Don’t

  1. kimjoy24 says:

    Thanks for posting this, I had not heard of this documentary. I can’t wait to see it.

    I agree about ‘Away from Her.’ There is a Swedish movie called ‘A Song for Martin’ that does a good job of showing the ugly side of dementia.The lead actor/actress were a couple in real life and he ended up being her caregiver as she lost her battle with cancer. In the movie she is the caregiver, and he suffers from Alzheimer’s.

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