In the fall of 2008, I wrote a screenplay I intended to film entirely in an Alzheimer's unit. After many weeks of rehearsals, I arrived at a troubling realization: I was not just making a challenging film -- I was making the wrong film.
Writing a fictional Alzheimer's narrative -- creating a neat and orderly plot whose course I could control, from a disease by nature chaotic and nonlinear -- was impossible. In the way that a son or daughter doesn't know exactly what to expect during a visit with a parent who has Alzheimer's, it's inconceivable (some might even say ridiculous) for a screenwriter to map out the trajectory of a scene in an Alzheimer's unit, and expect it to play itself out in a manner remotely resembling what was written.
Other than the loose structure provided by a schedule of daily activities -- a parachute toss, the hair salon, an oldies sing-a-long -- life in an Alzheimer's unit does not follow the logic of the real world. It is founded upon the incidental and accidental, a string of interactions and experiences that digress unpredictably, omnidirectionally and constantly turn back on themselves. The Alzheimer's unit almost never adheres to the continuity of the linear narratives that we enjoy on a daily basis -- or that screenplays require.
The first time I visited the Traditions Alzheimer's Unit in Danville, Calif., I was greeted at the door by Lee Gorewitz, a spry septuagenarian in a baby blue jogging suit. With the exuberance of a cruise director, Lee presented herself as a staff member, 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; 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.
For the next six months, I visited Lee with the hope of making a documentary that would capture her inner universe: the discord and frustration, the communication breakdown and uninhibited behavior everyone speaks of when they speak of Alzheimer's -- and the unusually poetic candor it can distill. Reflecting on her birthplace, Lee would say, "Brooklyn, it's right behind you." Considering love: "That's a damn good thing to work with." Regarding her deceased husband: "How do I even say it? The air -- was very good."
Like many in an Alzheimer's unit, for Lee every day is an odyssey: wandering to and fro with no destination in particular, on a quest for something that she can neither articulate nor comprehend. Having advanced Alzheimer's was once described to me by a neuroscientist as akin to waking up in the middle of hinterland Russia, alone, not knowing a lick of the local language, not knowing how you got there and being expected to act like it was home.
Due to that constant sense of disorientation, in the span of minutes Lee could morph from pensive thinker to gregarious helper, from bubbly mover-and-shaker to morose and sometimes cruel instigator. When in good spirits, she consoled heartbroken women, kissed caregivers and shook a tail-feather even after the music had stopped. And with no realistic option for leaving, Lee also gave in to frustration: She argued with her tablemate at lunch, kicked a bouncy ball at a frail man's legs and unapologetically told a sickly woman that she is going to die.
My time with Lee, and her struggle, left me utterly confounded. Who should say Lee's fragmented reality is any less valid than my own?
Composer John Cage once wrote, "The first question I ask myself when something doesn't seem to be beautiful is why do I think it's not beautiful. And very shortly you discover that there is no reason." A shift happened for me when I started to embrace the sublime chaos of Lee's world. Spending time with her became not about remorsing 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.
In ways that are often painful and intense to the rest of us, Lee and others with Alzheimer's stumble along a road we're all traveling, trying -- often desperately -- to communicate something, anything, grasping for unanswerable riddles.
And until there's a cure for Alzheimer's, there's one way, outside of medicine, to counter this disease, which we all have within our reach, whatever the road, whatever our relative agility at traversing it.
Empathy.
Scott Kirschenbaum is a filmmaker based in San Francisco, Calif. His documentary You're Looking At Me Like I Live Here And I Don't will premiere nationally on PBS' Independent Lens on Thursday, March 29, 2012.
For more by Scott Kirschenbaum, click here.
For more on Alzheimer's, click here.
Dr. Veronica Anderson: Don't Lose Your Mind: 7 Ways to Prevent Mental Decline
Marie Marley: What If It's Alzheimer's?
Michael Hodin: A Bold New Attack on the Alzheimer's Scourge
Deepak Chopra: The Higher Health, Part 3
My husband now doesn't understand what eating utensils are for. He's likely to plunge his hand straight into the mashed potatoes. He also hallucinates, so while at the table he's busy eating invisible food with an invisible fork. The way we feed him is to wait until he opens his mouth for the invisible food and then popping the real food in. I've learned, when reaching across him to rescue a bowl of food or glass he's about to tip over, that letting him get ahold of my arm means he's going to try to pull it to his mouth and take a bite out of it.
He tries to talk, and while occasionally he says something very clearly, most of the time he can't be understood. When we work especially hard to understand him, and ask him to repeat several times, he comes out with something like, "Throw the shirt on the ground and drive over it."
I wondered what her story was before she was in the care facility. Where were her visitors? But that was not the point of the film, was it?
I also wondered what went on in the minds of all the people ('all the lonely people'?) in the facility.
The caregivers took each client as they were and were very gentle with each.
This is us..
The mind and brain are so delicate.
There are proposals to build nurseries and old folk care centers alongside one another so that patients can have interaction with infants.