We all think it won’t happen in our family. We ignore the signs. We pretend like everything is OK when it is not. For one out of every three of us, we are facing loved ones with Alzheimer’s or another dementia.
I’ll never forget when I telephoned my maternal grandmother and she told me she didn’t have a grandson and then hung up on me. And I still remember watching the torture of the physical pain my paternal grandmother endured. I witnessed my parents have the privilege and heartache of being the caregivers to their parents. I watched the toll on their emotional well-being, their relationship with one another, and the forever changed relationship with their own parents. In the sadness surrounding their deaths, I faced the mortality of my parents. I knew not long from then, it would be my turn to step up. I faced my own.
Alzheimer’s and dementia affect people no matter their race, religion, socio-economic background, or sexual orientation. Because of my family’s experience I was inspired to take action. I am a storyteller with a long theater background. I realized, however, this was a story I wanted to tell on film.
Along side my producing partner Gio Messale, whose grandmother also suffered from Alzheimer’s, I have produced and directed my first short film, titled Policy of Truth. The story depicts a man who lives in a city and must come home to his father in the country to take away the car keys. He must begin to parent his parent with the early stages of Alzheimer’s. The film stars Tony nominee Stephen Kunken (Enron, Still Alice, The Affair, The Wolf of Wall Street) and Broadway veteran and president of Actors Equity Association Nick Wyman (Les Misérables, Boardwalk Empire, Die Hard With a Vengeance).
Before filming, Gio and I candidly discussed how the story, written by Doug Bost, took us back to the early days of our grandmothers’ “dreaming and forgetting.” It is an underlining theme in the film.
Gio recalled the confusion in his grandmother’s voice when she realized she was repeating words and questions. He remembered the frustration in repeating the answers a million times as if each were the first. He thought of the cloudiness in her eyes when she was confused and the sadness in her voice when she realized things were not the same. Despite this, there were moments of lucidity in the beginning. These are the moments caregivers cherish.
As a middle-aged gay man without children, I wonder who will take care of me. Who will be the caregiver and what kind of support will they have? The last two decades of increased awareness of gay people has brought attention to our community. However, our microcosm is as youth-obsessed as the macrocosm. We spend our time and money on youth-oriented activities, social media campaigns, and causes. As more GLBT people come out of the closet, and as the current generation ages, a greater awareness for support and additional services will be needed for the elderly in our community.
In 2013, 15.5 million caregivers provided an estimated 17.7 billion hours of unpaid care valued at more than $220 billion. That figure is growing. How do we ensure that when it is time to be placed in a facility we are providing care that is homophobic free, that our “chosen” family has the legal right to make decisions on our behalf, and that all of our needs will be met by those caregivers? We learned how to be caregivers during the AIDS crisis. Perhaps we will translate some of that into Alzheimer’s.
More than 5.1 million Americans are suffering from this disease. Together we must continue the conversation to bring change so we will no longer have to make that translation. Don’t wait until it affects your family or you find yourself “dreaming and forgetting.”
NICK DEMOS is an award-winning director and Tony Award-winning producer of the Broadway hit Memphis. Follow him on Twitter @nickdemos. Policy of Truth will have its Los Angeles premiere at the L.A. Indie Film Festival March 6-8 and in New York City at the Soho International Festival May 15-21. Follow the film on Facebook or Twitter @Policytruthfilm.