The documentary feature Wine, Women, & Dementia will debut nationally on PBS and the PBS app on November 2nd, timed to coincide with National Family Caregivers Awareness Month.
This full-length film, directed with love and humor by first-time filmmaker Kitty Norton, explores the physical and emotional toll of dementia caregiving on family members who face isolation and financial stress.
I had a chance learn more in this interview.
Can you share a little bit about the title?
I decided on the name Wine, Women, & Dementia for the documentary for a couple of reasons. When my sister and I first became co-caregivers to our mother, Gloria, we were not in the best of places. We had gone through a really nasty fight a few years prior, and we had just started to talk to one another again, tentatively, on pins and needles. Suddenly we were thrust into a situation where we had to work together - let go of our own issues with each other to cooperate on what was best for Mom in the shared space of Mom's home. It was difficult and painful, but one way we dealt with it was having a wine night every couple of weeks. These evenings weren't planned, they just organically happened. After Mom would be tucked safely in bed, Lexie and I would meet up on the back porch, open a bottle of wine and be able to talk about Mom, avoiding personal landmines in our conversations while finding support in each other for this new dementia morass we had been thrown into. It slowly allowed us to begin trusting one another again - our shared caregiving experiences and the camaraderie found in a glass of wine allowed us to begin healing.
Through my dementia family caregiver blog, Stumped Town Dementia, I was making friends with other family caregivers around the world, and I found my sister and I weren't the only one's pouring ourselves a favorite beverage at the end of our caregiver day in order to ease feelings of sorrow, or celebrate the warmth of caregiver successes, and ready ourselves to do it all over again in a few short hours. Caregivers would write that they too enjoyed a glass of wine, a cup of tea, or a bourbon neat should the previous hours require a stronger response. I wanted to acknowledge this nightly ritual of self-preservation somehow.
I thought about the song, Wine, Women, & Song and I enjoyed the lilt of the words while thinking a similar film title would make the documentary more memorable. Thus, Wine, Women, & Dementia was created. Plus, Loretta Lynn is just hella cool. :)
Why is it important for people to be open about the challenges of caregiving?
I've watched the generations before me operate under the motto "It's a family matter" when it comes to dealing with a terminal illness. That frame of mind equated to no discussion of the situation outside the household. In my observations that has guaranteed caregiver isolation, inescapable high levels of anxiety, and the proliferation of stigma around the end-of-life journey - that it is to be avoided at all costs instead of an experience worth participating in.
I've watched the generations that follow me break open the flood gates on what it means to be a caregiver, the challenges, the successes, the normality of day to day life when walking someone down the long road to death. I watched my father buckle under the weight of keeping the "burden" of caring for Mom to himself. While in my own caregiver journey I found that the more open I was about Mom's dementia, the more I reached out to others on the same path, the greater the support I found, as well as increased confidence in my caregiving prowess. I’m not going to lie, at first it was a perverse relief to know everyone else was struggling. Second, it was the camaraderie of sharing our experiences that helped me find new ways to look at dementia, to shrug off my epic caregiver fails, and celebrate my less frequent sublime successes.
Caregivers sharing their stories - the good and the awful - means other caregivers know they aren't alone, allows us all to learn from each other, and educates those who are not (yet) in the caregiver world that this life is doable, tough, and worth it.
How can people find support with others in the caregiving community?
Finding support as a caregiver is not a one-size-fits-all solution, as some of us live in places with support resources while others of us are geographically isolated from assistance. Most of the dementia family caregivers I know started building their support with family and friends. Not everyone is going to be comfortable joining the journey - our culture enjoys fearing death over accepting and learning from it - but my sister and I worked hard to make others comfortable with Mom and her dementia progression. By showing that while dementia is not a normal part of aging, the "normal" dementia lifestyle could sure be lively and worth sticking around for, and that we were just as prone to humor about the absurdities of dementia as our family had always been about the absurdities in the rest of the world around us, we managed to create a space for folks to timidly step into the arena with us and Mom. Some of them stuck it out, and like us, finished the journey with pride knowing that we all had been there for Mom, and each other, through thick and thin.
Family and friends are just one of the places where people can find "villagers" to support them. Local support groups, dementia cafes, dementia art programs through local museums, or dementia choirs in the area - these are all places to meet others who are walking the dementia walk. And while there's not much to thank the pandemic for, the rise of online support groups is certainly a checkmark in the gratitude column for COVID, and that goes for both caregivers and people living with dementia who are looking for others on the same journey. There are loads of caregiver community groups on Facebook, and Instagram and TikTok are full of caregivers sharing their day to day lives.
I tell caregivers that are starting out on their journey to not be discouraged if the first time out you don't find the right fit. It can be a bit like dating where you might walk away from an encounter and think "Never again with that bunch!" But keep searching. Anyone helping another to the end of their life needs their own support. Find your people... you're gonna need 'em.
I have a lot of resources on the website Resource page, or here is some that I specifically referenced in my answers if any of this is helpful!:
Dementia Alliance International focuses on folks living with dementia providing online support groups that serve Australia, various countries in Europe and North America Memory Cafe Directory offers both in-person and virtual get-togethers for care partners and their loved one to participate in, throughout Armenia, Australia, Brazil, Canada, and the USA
