Okay! So…progress was made today! This is a screenshot from the newly updated Youtube Channel! And for the sake of saving my fingers from even more typing…here is what I just posted about this on my IG.
It’s Mother’s Day. And in honor of #mothersday I committed to completing #caregivingtheuntoldstory vis a vis the Youtube Channel content. I have broken out the full interview into 19 separate bite sized chapters for easier viewing. It’s all live now on the Youtube Channel. Link is in my bio!!! https://www.youtube.com/channel/UCSYml4DxCKUbV5SV0MZErmA
I did this today in honor of my mom, who lost herself in the world of dementia. She didn’t have #ftd but the impact was the same in terms of trying to manage the situation.
Backstory: I was a full time live in caregiver for my mom from August 2019 until October of 2020, right up until the second she died from cancer. However the experience of her having cancer was exceedingly complicated by her having dementia. What I learned is that between the two illnesses, dementia was the more awful one-by far. Being a caregiver of someone with dementia changed my life in ways that no one else could understand…except for those who had also been through it. To be blunt it nearly killed me. The whole time I was in that situation I had one overriding question “why isn’t there more support for people in my situation?”
I learned a lot and received a lot of support from online chat groups devoted to dementia caregivers. Especially via a group on Facebook called “The Purple Sherpa“. I learned that these caregivers are isolated, not listened to, ruining their health in order to help others and the hardest working people you will ever meet. Their situations are beyond belief. And what they need, is a voice at the table. Because if they are not a fundamental part of how we approach dementia care, then nothing will improve enough to matter.
But before I took care of mom I was a filmmaker and documentarian. I had interviewed countless people for films and videos. To me, the power of seeing someone talk about their experiences was important to capture. I began to imagine a documentary movie that would give dementia caregivers a voice.
Then someone told me that they wouldn’t want to see a single movie. Nope…they said I should make a Youtube channel with lots of interviews from different caregivers.
That set me on this path. I first reached out to Jackie at FTD: A Love Story back in November of 2021. This was about one year after my mom had died from cancer. We finally met to do an interview in NYC in early 2022. And today we launch the first video of that series! Jackie’s “untold story” is the feature of the first full episode. Oh and credit for my site name and project name goes fully to Jackie. She came up with it!
At the same time this blog and that full video is launched, we have partnered with The Purple Sherpa group to do their own launch. They will be publishing each individual chapter to their FB support group. One every few days. How is it that this will work out?
I made this video as a full volunteer, donating all my time and gear and travel. Jackie also did the same. This video series will be open source, meaning anyone can contact me and I will help them figure out how to use the footage on their social media outlets-for free. Yes. Free.
The goal is to get this first video and all others to come after it, in places where it will be seen. Caregiving: The Untold Story has the potential to help every single caregiver, doctor, clinician who sees it. So the goal is to have as many people see it as possible.