Since we wrapped up the Jackie video a whole lot of things have been going on. People have been watching. I have been able to get in touch with numerous different groups here in the USA who are at the forefront of dementia care and dementia prevention research. Jackie’s video has become a sort of key that has opened a lot of doors to some enlightening conversations. She has also been there for most of those Zoom calls too. Not every group wants to be known at the moment so I will keep the big reveals for later. Also I am typing this up while on a rare day off. Yes. Days off. Now I have weirdly…days off. Because I work now, for money. And it’s the strangest thing ever to work again. For example, offices. They are a thing. Just picture a coffee shop without the coffee, or music, or windows, but you get paid to be there along with everyone else. Work, after being a full time caregiver, is very very strange. After being out of the “workforce” for 3 years while doing that has put me in a very different frame of mind about what “work” is. I know that being there pays the bills. And I am lucky that I do work that I enjoy. But it’s also just bizarro world that people pay you to do something so uncomplicated. Do you know what I mean? I did the hardest thing I could possibly do already. Taking care of my parents was the hardest thing I will ever do. And nobody pays you for that. In fact I was dead flat broke the entire time. So it really does a number on my mind to now be paid for something that is absurdly easy by comparison. Life is odd.
A second interview happened! It’s in post production now and should be wrapped up by July 25th. I am very excited for many reasons, about this one. It features Heather from https://www.instagram.com/hkellam9/
Heather wrote to me after seeing the Jackie interview. See how that works? Amazing! She wanted to do an interview and after we had some prep calls her and her husband (he ran sound recording on their end) helped to pull off a very powerful interview that I think will help a LOT of caregivers.
Below is a screenshot from a recent posting from Heather’s IG. You should definitely read some of her postings to get an insider’s unfiltered version of what it is like when your mom gets FTD: Primary Progressive Aphasia variant. Heather is also a nurse. Which to me, makes her experience even more valuable to learn from.
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.