A world bereft of compassion is an unnecessarily cruel one. For sufferers of Alzheimer’s, their families, and their caregivers, such a world is far too often the reality. When Banker White’s mother Pam began experiencing the initial symptoms of Alzheimer’s, rather than withdrawing, he committed to opening the doors to the merciless disease by documenting her struggle in what would become The Genius of Marian, an elegiac documentary that depicted Pam and her family’s new existence (and an extension of Pam's unfinished book about her own mother Marian Wlliams Steele, who passed from Alzheimer's years prior). But the point at which the influence of most documentaries typically ends – at the film’s denouement – was where Banker’s vision continued.
The Genius of Caring is Banker White’s new web-based project aimed at building a community of and for caregivers where dialogue flows freely about an otherwise isolating disease. The ultimate goal: compassion and understanding. The site is currently in beta and will need a successful Kickstarter campaign to continue to tell the stories of caregivers from across the country. Below, Banker took some time to chat about the impetus for the project and his own intensely personal experiences with Alzheimer’s.
The Genius of Marian is an incredibly poignant portrayal of Alzheimer’s, but The Genius of Caring looks to achieve something different. What is your hope for this web project?
Banker White: The process for caring for a loved one with a terminal illness is humbling and isolating – isolating at a time when you need the most support. The process of producing The Genius of Marian helped us communicate better as a family and sharing our experience publically has connected us with so many individuals and families who are going through the same thing. The response since the broadcast has been overwhelming – so many individuals and families reaching out, sending pictures and sharing both heartbreaking and beautiful stories. It has definitely confirmed why there is a real need for this kind of project. Many people who have reached out to us will be profiled on the site and have expressed a hope that what they learned might have value for others.
The goal with the site is to create a platform for people to feel safe sharing their experiences and to facilitate making connections and building community with others going through the same thing. This site, www.geniusofcaring.com, is now live and launched as a beta version of the site with a portrait of my father Ed White caring for my mother Pam. We are scheduled to release five more documentary portraits to the site profiling caregivers from all over the country. We are choosing stories that reflect a diversity of experience profiling spouses, adult children, siblings and paid care in a caregiving role and that are from diverse backgrounds in terms of geography, access to care, and available resources.
Reflecting on your intimate experiences with Alzheimer’s, what do you find to be the greatest misconception about the disease?
BW: People are so terrified by dementia that it creates so many misconceptions. It is even a part of colloquial speak to say I don’t want to go, ‘like that.’ When there is that much fear, we don’t looks closely and we don’t learn on so many levels. Many people still believe it is just loss of short term memory or senility and is a natural part of the aging process. Much in the same way heart disease and cancer were regarded 50 years ago. The medical community even admits it was not universally accepted as a disease until the mid-80s. So people seem also not to believe the numbers; that 50% of people over 85 are experiencing some form of dementia, that it is a terminal disease, that it is the number 6 leading cause of death, etc. What we do know is with the baby boomers aging this disease will become a reality for almost everyone in this country.
Despite these numbers I hope we can also learn to not run away from this and move towards educating ourselves to the reality of caring for someone with dementia, because the disease is much more complicated than memory loss. It comes with complex behavioral changes, severe physical impairment in the later stages, and it is care intensive and an incredible burden on the caregiving team – physically, financially and emotionally. It was our experience, and I have heard from so many others, that there is also humor and lightness in dementia, that you are asked to be in the moment with your loved one and it teaches you patience and compassion.
How much was the genesis of this project based of your own desire to have a community with which to share your challenges?
BW: What is absolutely true is that a strong community of friends and a network of support is what helped us through it as a family. We had a close group of friends who supported my parents and naturally transitioned into a kind of caregiving role, but it took time. Many people did not know how to react to my mother’s diagnosis. She was the first in their peer group to go through this because she was so young (officially diagnosed at 61, but was going through difficult changes for 5-6 years leading up to the diagnosis).
When it did ‘get out’ that she had been diagnosed with Alzheimer’s, it was like they lost at least half of their friends. People just did not know what to do. And because my Mom was so traumatized by the stigma surrounding the disease, we did not ask for help or really communicate well at all with our network of friends. Eventually many of these people did come back into their life and still today are a big part of how we are supported. Some of that support is as simple as still including them in their life, coming by to have lunch with my mother and giving my father a couple hours off.
My father talks about this very specifically in Chapter 2 of the portrait on the Genius of Caring site: http://geniusofcaring.com/portraits
I think one of the reasons for the change is that we became more vocal – actually moved from a place of secrecy to public advocacy. Through the film, interviews, and writing everyone in the family has done, people maybe understood what we were going through better and reached back out. So the site hopefully provides a space for people to share, but also for people to learn, so our understanding as families, communities, and as a country of what this experience is like becomes much deeper.
You attended last year’s New Frontier Story Lab with this project. Is there one particular resonant experience or lesson that you gleaned from that process that you could share?
BW: The Lab was such an amazing experience – so many talented artists and advisors from many different disciplines. The big take away for me was to strip away all the ideas and infinite potential that could be explored to the essence of the project: What is driving you to do this work? And then rebuild confidently from there.
That this project had real utility for people going through this was essential. We worked with caregivers, geriatricians, and social workers after the Lab to both develop the set of prompts and questions and to build a space that felt uniquely safe for families to share and connect with others.