I tend not to think too much about the future as an elderly caregiver to Sophie. I tend to push away the thought that she'll be home full-time when school is finished in two years. You could say that I'm optimistic that everything will work out, or you could say that I've achieved some sort of buddha-like satori where I literally live in the present. Or you could say that it's so freaking scary. Or you could say that I'm f^*ked.
An old college friend of mine, Sophie Sartain, has made a beautiful documentary called Mimi and Dona. Sophie said this: MIMI AND DONA is a personal documentary about my aunt and grandmother. It is also a love story. I set out to make it in 2009, taking an HDV camera from Los Angeles to Dallas to capture the quirky and insular world of Mimi and Dona. Time was scarce. Mimi had finally admitted that she could no longer care for her daughter Dona, and my mother (Dona's sister) had submitted an application to move Dona to a state-run institution in Denton. After 64 years, Mimi would have an empty nest, and Dona would suddenly be on her own.
You can read more about it on her website, and hopefully you'll see it at screenings in Texas and New York.
An estimated 4.6 million people in America have an intellectual or developmental disability.
75% of these individuals, our fellow citizens, live at home.
This is what I posted on Facebook:
THIS is the reality of what long-term care-giving is like in these United States. As we argue and dither over everything from vaccinations and women's reproductive freedom and the Affordable Care Act, tens of thousands of our fellow citizens are being cared for by their aged parents with little to no help and only dismal alternatives. THIS will be the fate of my family, too, unless we wake up and extend some compassion and sensible supports to families. Thank you, my old college friend, Sophie Sartain, for making this incredible documentary that will, I hope make a big splash. Watch the trailer.
Mimi and Dona - Teaser Trailer from Katahdin Productions on Vimeo.
It's not easy taking care of our kids at home and it's not much easier having them in care. Even though Katie has wonderful care, I worry about her and I miss her. I can't care for her and I can't not care for her. Shit.
ReplyDeletelily cedar -- All I know is that you're an extraordinary mother.
DeleteMy heart just broke.
ReplyDeleteDitto what Ms. Moon said. I wish full distribution for what seems like an incredibly important and poignant documentary.
ReplyDeleteJoanne -- Sophie is an amazing filmmaker, and I hope the movie gets a wide distribution, too. She did say that it might have a run on PBS. I will keep everyone posted --
DeleteGiven the longevity in our family and my mom's desire to be the oldest, I may still be caring for her as I approach 70.
ReplyDeleteI'm glad she's making this film. I believe Oliver or Henry might one day make such a film.
ReplyDelete37paddington -- I hope Henry or Oliver make a film about an amazing local community residence that has replicates all over the country, is funded by people who have come to their senses and decided not to buy mega-mansions or uber-luxury cars but instead invest in humanitarian causes.
DeleteDarling Elizabeth, they may both found the residences and make the film, and win a international awards for their vision. The need is so obvious. Why doesn't it already exist?
DeleteWhen I watched the trailer, I got such a lump in my throat. It is one of those movies that I think I will have to try and watch at home so that I can occasionally pause it, walk around the block and breathe, and absorb the emotion before watching a bit more. The day to day reality of caring for someone whose needs are immense and all-consuming is something I have felt only for small windows of time in my life, but I think it is so isolating and exhausting that it deserves more air. If only so that we can think about respite and small, community-based support for folks who are doing it. I love that your friend made this movie and I am surrounding her family in love and light as they navigate the ongoing challenges. Thanks so much for sharing.
ReplyDeletekario -- Yes. Small, community-based support for folks.
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