USA | 2013 | Documentary
Run Time: 84 minutes
Film source: Filmmaker
Sponsor: Nora and Nancy Bercaw in honor of Beau Bercaw
Director: Alison Segar | USA | 2011 | Documentary | 15 minutes
A visually rich, emotionally complex story that follows Pam White in the early stages of Alzheimer’s disease as her son, the filmmaker, documents her struggles to retain her sense of self. After she is diagnosed at age 61 life begins to change for Pam and everyone around her. Pam’s husband grapples with his changing role from partner to caregiver. Her adult children each find ways to show their love and support while mourning the slow loss of their mother. And Pam deals with the fear that she will be institutionalized for her disease. This delicate film treats the subject with a humor and a light touch while serving as a meditation on the role of memory in creating legacy.
I have been making documentary films for more than a decade and each project has been deeply important to me in its own way. My most recent film, THE GENIUS OF MARIAN, is the most personal and most challenging project I have ever undertaken. I approached this film both as a loving son and as a patient observer. It is a story about my extraordinary mother, Pam White, and her struggle with early-onset Alzheimer’s disease. On the surface, the film is about my family’s efforts to come to terms with the changes Alzheimer’s disease brings. But it is also a meditation on the meaning of family, the power of art and the beautiful and painful ways we cope with illness and loss. The last few years have been a roller coaster of emotions, filled with frustration, sadness, joy and celebration. I didn’t originally set out to make a documentary film about my mother’s disease. The project began as a series of informal recorded conversations with my mom in the months after her Alzheimer’s diagnosis in 2009. She had begun writing a memoir called “The Genius of Marian” about her own mother (my grandmother), Marian Williams Steele. Marian was a well-loved and well-known painter and was in many ways the matriarch of our family. In 2001, Marian died of Alzheimer’s disease at the age of 89.
Soon after my mom started writing the book, she began to struggle with typing and other mental tasks. To help her continue the project, I began filming our conversations. For the next three years, I recorded both the big events and the small details of my family’s changing reality. I filmed my parents recounting stories of how they met and fell in love. I captured my mother’s delight at the birth of her grandchildren. But I also documented the slow erosion of my mother’s ability to dress and feed herself, her waning independence, and her fierce resistance to accepting help from professional caregivers.
I grew up feeling like my mom could do it all—and often, she did. She worked full-time while raising my siblings and me, maintained deep friendships and dedicated herself to helping others, both in her personal life and in her career as a therapist. She loved being a mom and encouraged us to be ourselves, always stressing how important it was to talk about our feelings, especially when times were tough. That’s why it was especially painful to see her frozen by the shame of her diagnosis, unable to talk openly about what she was experiencing. And despite being a loving, willing and available family, we also struggled to share our thoughts and feelings with each other. Before she was ready to talk candidly about her diagnosis, my mom and I were able to connect by remembering Marian, someone we’d both loved and had lost to the disease that was now affecting my mother. These intimate conversations became a kind of therapy space and my mom began to share the complex emotions related to what she was going through. At the same time, filming with the other members of my family provided a way for each of us to celebrate my mother’s life while processing difficult feelings about how she was changing. I am grateful to my siblings and father for having the bravery to share so openly. I have been especially moved by my father, who displayed tremendous compassion and loyalty while grappling with his changing role from partner to caregiver. The spirit of my mother’s book project was my point of departure — the deep desire to memorialize someone you love and to connect with the difficult and complex emotions that surround losing them. My goal is to create a film that finds light and beauty in a place often shrouded in shame and confusion. A patient approach to production has helped me capture the essence of my family’s story. I’ve shared warmth and intimacy in conversations with my mother, laid bare our family’s challenges in caring for her and allowed myself to feel the silence that increasingly fills my parents’ house. I believe the story is deeply important and powerfully told and I trust it will resonate not only for those directly affected by Alzheimer’s disease, but for with anyone who has had to reconcile complicated emotions around aging and loss. It is from this place that I know we have created something special.
~ Banker White, Director