- By Sue Campbell
When the poignant documentary The Genius of Marian begins (it airs tonight on PBS; check local listings), we meet Pam White, at 61 beautiful, vivacious and diagnosed with early onset Alzheimer’s disease. She’s having a hard time breaking the news to people she loves. She talks about her “memory issues,” and sometimes denies having the disease. Her family wants to help her, but isn’t always sure how.
Banker White, her oldest son and a documentary filmmaker, is on an extended visit to his parents' home near Boston. At first, his role is to help Pam as she writes about her own mother, Marian Williams Steele, a renowned painter best known for portraiture and New England landscapes. Marian died of Alzheimer’s in 2001.
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To help with the book project, Banker has Pam record video diaries — he sets up a camera and leaves the room. What resulted, he says, were intimate snippets of Pam processing what happened to Marian and exploring her own transition from daughter to caregiver. By talking about her mother’s Alzheimer’s and decline, Pam, over months of filming, began to accept what was happening to her.
Discovering a Broader Message
Banker was so involved in his mother’s book project that he didn’t fully realize the impact of Pam’s diaries until he watched all the footage on a trip back to his San Francisco home.
“I had decided to move to Boston and went back to get my things. The distance gave me perspective. I was so emotional watching my mother talk,” he says. Suddenly, “I saw the gravity of how she was changing.”
Banker realized he wanted to tell his mother’s story — Pam had been a model and actress, had married and raised three children, had become a social worker — as much as Pam wanted to tell Marian’s.
When Banker returned to Boston, he talked with Pam about shifting from the personal book project to creating a public documentary about what Alzheimer’s looked and felt like for her and their family.
The former social worker believed in the importance of talking things through and processing emotion. She was for it. She wanted her experience to help others.
Behind the Lens
Speaking to the camera, it turned out, allowed all of White’s family members — his dad, Ed; his sister, Devon, and brother, Luke — to reveal thoughts and feelings they might not have shared otherwise.
“My dad cried in every interview,” Banker says, “then he would get embarrassed and say, ‘Don’t use that.’ But he was so overwhelmed with caregiving duties, how else was he going to find the space to grieve, to have moments where he could admit how much he misses and loves her? It was emotionally cathartic.”
Nobody sees what caregiving is like up close, Banker says. “It’s all behind closed doors. It’s a thankless job,” he adds.
(MORE: Bringing Someone With Dementia Back to Life)
When family friends saw screenings of The Genius of Marian, the truth of Pam’s situation spurred many to come forward to help. “They started calling my dad and would invite them over for dinner. My dad began to understand the effect of sharing your story, what it can be for people,” Banker says.
The Genius of Caring
Now, the White family wants to continue Pam’s life’s work by helping to support families dealing with Alzheimer’s. They've launched The Genius of Caring campaign, an interactive website where people can post their own short documentary portraits.
They recognize that millions of people caring for those with dementia are often lonely and isolated, and that each experience of the disease is unique. Those experiences collectively inform how the whole country understands Alzheimer’s. And through understanding, change will come — new ideas, new treatments, new methods of coping and care.
Ed White & Pam White
A Powerful Force
In his film, Banker uses water as a recurring motif. He chose his imagery consciously. It was something his grandmother, Marian, painted frequently in her depictions of the New England shoreline. His family loved excursions to the beach.
“As you approach something as huge and intimate as end of life,” Banker says, “being able to meditate on something so awe-inspiring and powerful — the ocean, or gathering storm clouds — there is something humbling that happens. Focusing on that power quiets the noise of anxiety and fear.”
His mother and father, he says, have moved to a smaller, more manageable house so Ed can honor Pam’s desire to remain at home until the end. “Right now, she can’t navigate the stairs and she needs full-time care,” Banker says. “But she’s lovely to be around. She’s playful. She laughs.”