Shopping with mom, my sister loses track of her. Finally approaching through some hanging things, unseen, she sees our
mother staring, helplessly disoriented, staring at a wall. When she sees Joanne, mom smirks at the suggestion something might have been amiss. By nature taciturn and reserved, she hates attention.
We learned from my sisters that there had been similar episodes; they told dad and me to watch for changes. I tried to
come around more often, as if on an undercover mission. One day alone with her after some months had passed, I commented that the days were getting shorter. “It must be what, four or so?” I could not see the clock, around the corner beyond her. I turned but mom had not. Gazing back unperturbed, she observed: “Could be,” her almost painfully self conscious expression suggesting: I don’t do clocks any more. I remembered other times after that when she had forgot things, completely out of character. I hadn’t put it together till now. Eventually my siblings, dad and I went to get advice from the Alzheimer’s Association. We read up and talked. It didn’t take long for the pattern to become clear, confirming things. I began writing notes for a story, trying to remember everything I could about how she was before she wasn’t any more. I knew right away I would shoot a film of it, without any idea how though, sometimes to my utter despair, such sensible reservations rarely manage to dissuade me.
I admired mother’s ability to cover as she had always been flawless in doing socially, always uncomfortable with her shyness,
saying things like: “Is that right?” and “...isn’t that something?” She could always adapt. My father was on the other hand
unable to restrain his panic, trying to make her remember things she dismissed as his comic invention. In this phase, when everyone seemed to her to be changing, I reworked my story to explore what it must be like for someone in the early stages of Alzheimer’s to experience an Alice in Wonderland transformation: doors and windows on the wrong walls, the clock misbehaving, people acting annoyingly solicitous. My father claimed she had overdrawn her bank account for the first time, or forgotten appointments, or meals...poor man was “losing it,” she joked with us children.
I told my wife Bev about the script idea; she is my best friend and a dependably unambiguous critic of my work. I trust her
judgment. I especially needed her to hold me down because I can get more enamored of my ideas and creations than common or economic sense would advise. She was struck. “You have to do this,” she said.
I began crafting what I would explain to my actors in rehearsals later were “dropouts” in the script - scenes from the
linear story line that are no longer there, only implied. In a normal film, the audience has to have all the information they
need to figure out a mystery. But I would be sliding present and past in and out even as the story appears to move through time,
the disorientation I was guessing my mother experienced. Unlike schizophrenia, cancer, or genuine mental instability, however, no one could come back from this disease and confirm the feeling, stages, or struggle during their decline so I was on my own to manufacture what I imagined it was like for a sufferer. On top of that, the story couldn’t be logical or chronological. I told
myself I knew what I was doing, even though I’d never seen anything like this.
I was living in mom’s head. I remembered driving home one midnight on an unfamiliar road in the country little traveled or
marked. I awoke from an exhausted trance not sure where I was, what direction I was headed, what time it was, even what I had
been doing. I tried to remain calm but the panic was rising for some agonizing Twilight Zone minutes when, finally, a road sign
came up and it all came back to me. That’s what it must be like, I thought. For months I searched for the right cast even as I was shaking the bushes and trying to find money to do the film. My fellow filmmaker contact who had suggested Lizzy for the lead had evidently misunderstood my needs. She was too young and inexperienced. We needed an older person. Still, she did a
surprisingly creditable job in her cold read, having done her homework. We talked about our families and her experience with
elders who had suffered the disease. I thought we might consider aging her with makeup.
A couple months after that, I brought her back. No one was working out for the role and I had by now read about early onset.
The idea of following the story of someone much younger than my mother, who now was over seventy, seemed more dramatically plausible. My wife and I discussed the idea that the character could be younger - maybe an even better way to reach a wider audience, to shock people who didn’t expect to have to deal with Alzheimer’s. I wanted to reach the uninitiated, as my family had been. I changed the story again and hired Lizzy, immediately working her like a dog. We argued and wrangled about lines, about her back story. She was taking ownership of Mimi, but she had to convince me before I would rewrite various snippets of dialogue.
My mother’s life became a reference but my research into the disease process brought me others: a woman in Colorado diagnosed at 44 who had got lost in her own back yard, for instance. As we shot, I only allowed Lizzy to see the pages for one
shooting day at a time once we started, leaving her continually lost and tense, not sure where the story was going. As she grew
tentative and more concentrated, it fed into her interpretation of Mimi, the same terror and confusion I wanted to leak into the
On our day together, a particularly brilliant autumn one, I am trying to keep mom busy so that she won’t know we can no longer
leave her on her own. I babble on about how much I love the season as I drive aimlessly, recalling when I was a kid and played in the leaves, hoping she might recall some of it, as if I had that power. Seemingly oblivious, she watches out the car window. I
even sing made-up ditties. I want to keep her occupied. She had always liked my charmingly witless prattle, but now glowers.
“Do you ever shut up?” Struck, I drive for a time in wounded silence.
The rudeness is not her, I remind myself. She gazes out contentedly. The sky is a brittle, heartbreaking blue. We roll up to a stop sign. Leaves fly in a stout breeze, skittering across the street and over the car hood. Something has occurred to her, and not wanting to disappoint her again, I wait in silence. Deciding finally, she says: “I like orange.”
“Me too,” I tell mom, relieved. “Orange is best.”
The production ran out of money two months in. We were forced to shut down. When running an independent film set, you have to inspire the confidence of people who are mostly working for food so there’s no real claim on them. We had to play it off as a
momentary break. I said I was rewriting some of the story for now. They didn’t know my wife and I were on the verge of losing the house because Bev had just lost her job and the film had tapped us out. I had not been taking on writing contracts in order to
complete the film, which was years away from being finished. I had to borrow money at Christmas from a friend for food. I had really done it this time. At one point, I was hospitalized with exhaustion. I had to pace myself, and I’m not great at that.
I tried to dangle the project before producers in Hollywood, some of whom had optioned my screenplays in the past. I went to
the Lifetime Channel, and was told the idea of early onset Alzheimer’s was “too dark.” This from the ‘Woman-Killing-Husband’
network. I was striking out everywhere.
At the last second, I drew another investor in the early months of the new year and I pulled the team together. Yet because
of the long hiatus, the cinematographer’s child had been born and he had to bow out of the project. Again, we scrambled to get crew to work for nothing.
My mother was getting worse. We sat down with an elder law attorney who gently guided dad to begin the process none of us
wanted to entertain. We convinced dad to move mom into a long term care facility. He seemed to take it as his failure to help her. I wanted to convey the same about Mimi’s husband Terry in the film, though I had to mislead the audience to think of him at first as a pushy louse, not guessing his understandable desperation. By now we were shrinking the crews to save money. The actors
were wearing out as months wore on; we shot in dribs and drabs. People were losing faith in me. I decided to call the film “You
Are Here,” a reference to a star on a map, useless for someone with cognitive deficits trying to locate themselves. Also, it’s a
sly reference for the viewer: But for the grace of God, you are here, in this film. I was determined now to market it to raise
awareness. Again, I hadn’t seen anyone do it this way. Bev thought I was again out to change the world while ours deteriorated and fretted, she admits now, about my mental health.
The first night at the facility, getting mom acclimated on the pretense of touring it, my sisters finally had to go home. We
had dad stay back because it would be too hard for her to let him go. We made the mistake so many do in underestimating an
Alzheimer’s patient’s ability to sense things. She realized she had been tricked, and busted us, wagged a finger. She spluttered
in the halting way she had now: “All you...very...bad!” But after the girls left, wrung out, I got mom to lie down. Frightened but
calming, as I would have been when she came to me after a childhood nightmare, she watched me. I uncomfortably assumed my role as father to his mother.
“Don’t go,” she pleaded meekly, a little girl, her hand gripping mine to keep me there. As she had done for me as a child,
I knelt by her bed, squeezed back now to reassure her, and drew my other hand across her forehead. I wasn’t going anywhere.
It would be years yet for “You Are Here” to reach completion, as I labored every waking hour in the edit suite when I didn’t
have to take stopgap jobs to keep us going. The first and only focus group response was disappointingly tepid. Back to the
drawing board. For another 14 months I reedited, added scene inserts, sound and new music beds. I could almost not
remember doing anything else in my life. I told my wife I was checking out some nice, reinforced appliance boxes, which she did
not find amusing.
My siblings and I had been feeding mom on alternating schedules. My continual routine when I came was to cheer her up,
her son the clown, with Henny Youngman jokes: “A guy told me today he hadn’t had a bite for a week, so I bit him.” She rolled hereyes. Even in her condition, she knew from cheesy. Finally, Bev and I watched the finished product alone in the
studio. I liked what I had, but I was too close. I’d spent 1100 hours editing and paid people to do some 400 more. If it wasn’t
right now, I was going to apply at Taco Bell in a small town where no one connected with this would ever find me again. Bevy turned around as my mother’s name appeared, and the credits rolled. She smiled, eyes wet. “You did it.” We fell apart.
The tour followed, traveling the country with the film to raise awareness for the disease. Eventually, we engaged elder law
firms to host our events as a community educational opportunity for the public and professional folk to get answers from and
network with a team of other providers and care partners. We are in the top 200 films of the nearly 5000 released in 2007, which
doesn’t mean we’ve made much, just that I returned on the original investment, which less than 20% of films typically do. I’m saying “Spiderman” is a little ways ahead of me on that list. But every time it gets hard and I wonder why I’m putting myself through all this, a guest will seek us out, thank us on behalf of a loved one or family, saying: “You have to keep this thing going. People have to see this film.”
Of the thousands who now have, many tell me they have done so three and four times, and each time it’s a different experience. I could have never expected that kind of reception, but overwhelingly audiences are stunned, enthralled. Mom would be proud. She passed in 2009, but I fortunately finished in time.
“It’s done,” I told her one day as we sat in her room. “People like the movie.” She tried to approximate the grin
on this stranger’s face. “You won’t like this, but I put your name on the screen. You’re famous. Deal with it.”
Mom nodded, approving. My work done, I finally shut up. The film would do my talking for me. We held hands and watched the
shadows slip along the courtyard plantings outside her window, flashes of orange in some of the trees above. Same old brittle,
heartbreaking blue sky.
It was going to be a nice autumn evening.