Banker White’s mother, Pam, had just started working on a book about her own mother, the well-known painter Marian Williams Steele, when she was diagnosed with early-onset Alzheimer’s at age 61. A filmmaker from Dedham, it seemed natural for Banker White to turn on the camera to help his mother complete her project. Mid-filming, White said he realized that what began as an intensely personal way to remember Marian offered some universal truths for families like his who were battling Alzheimer’s.
The film, “The Genius of Marian,” made with his wife, Anna Fitch, aired on Sept. 8 on PBS, and can be watched online at www.pbs.org/pov/geniusof
marian until Oct. 8.
Q. Your mother’s 2009 diagnosis, just eight years after your grandmother’s death from Alzheimer’s, must have been devastating.
A. It came after about four years of worrying about how she was doing. So, in some ways, the official diagnosis was helpful.
Q. Your mother had recently started to write a book about her own mother, called “The Genius of Marian.”
A. I was really close with my grandmother who was an amazing artist, a magical grandmother. The book was a tribute to who she was. The initial impulse to get the camera out and press record, was really a very personal thing between a mother and son, and a way to help my mom continue this project. It gave us the ability to slowly talk about my mom’s own diagnosis, because we could reflect on what it felt like for Marian, which was very comfortable for my mom.
Q. How did your mother react to the filming?
A. My mom, in addition to being a career social worker, she was a model, she had done stage acting. She was a beautiful woman with a great smile. I think she loved being on camera and feeling that kind of attention. The presence she brought to that space, even in the most compromised way you could possibly show up there — just having been diagnosis with a terminal illness that was going to affect the way her mind worked and her ability to embody her full identity. Even in that space, she had an incredible poise.
Q. Was it difficult for your family to see these incredibly personal moments on film?
A. The process of filming helped everyone [in the family] in a different way. For my father, it formalized the schedule with which we would talk about what my mom was going through. He’s such a loyal, loving husband that even discussing why we needed to take her car keys away even when it was clearly dangerous for her to be driving, felt like he was being disloyal.
Q. The filming helped you both cope?
A. It became a space where we could process and grieve. I had really emotionally connected conversations with my father with the camera between us.
Q. Your mother, who now lives in Brookline, became a grandmother during the filming – first with your sister’s three children and now your two. Has she been able to enjoy being a grandmother?
A. There’s this incredible way in which young children experience the world, which I believe is wonderful for anyone going through dementia. [Young children] have absolutely no judgment. The way she behaves is who she is and they absolutely love her. Kids are really present to things like looking out the window to squirrels and birds. They’re running a similar type of vibration and experience of the world. Getting finger paints out and all that has just been really wonderful, and very much in synch with the way my mom experiences the world.
Q. With your family’s history, are you worried yourself that you might get Alzheimer’s some day?
A. None of [her three] kids has had a genetic test done. Since there is no course of treatment, it didn’t seem like helpful information. Marian and my mom, they did the types of things their whole life that you would say someone who is experiencing dementia would do. They were wonderfully distracted by all kinds of things in the world: losing keys, losing your train of thought. It just seemed to be the way their mind would work. And I recognize that I have a bit of that, too. I don’t think if I had a test done that showed me I was more at risk it would surprise me at all.
Q. What about your mother is still the same, unchanged by this disease?
A. For my mom, her whole life was about connecting openly with people. She was an incredible listener. She was a supportive and loving mom. She maintained a huge amount of very deep and meaningful friendships — that aspect of who she is is amazingly intact.
Q. What do you hope the film accomplishes?
A. [I hope it] helps people understand a little bit more about what the experience is actually like. It is a very long disease process. You’re grieving the loss of someone who’s still there. It’s so important to try and be as present as you can, to give the type of support you can – also for yourself with all the complicated emotions around what it’s like to lose somebody.This interview has been edited and condensed. Karen Weintraub can be reached at email@example.com.