Thanks to @askhowie for this really great interview. He asked some great questions!
Today has been busy! In the interest of saving my fingers from even more typing…here is what I posted elsewhere about my day so far…
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.
Right now I am listening to Hwa Sa “TWIT”. If you don’t currently watch Kpop, and the way that they edit and light videos in South Korea, you are really missing out. This week I was also blown away by an intro for Season 1 Episode 8, “The Widow” on Amazon. The music featured a song by Cage The Elephant. Even if you don’t watch the episode, just watch the intro until the music starts. What I appreciate about it, is that without a single word of narration, the visuals and the music show the true cost of where the materials inside of our cell phones come from. It’s ugly. It’s true. It’s powerful. It’s beautiful. It’s a good use of video.
Right now I am working and temporarily still bouncing around houses in Warren, VT. But (drumroll!) I have finally acquired housing in Plattsburgh, NY. Why? Why Plattsburgh? I admit, it’s not exactly a place people are flocking to live. It’s got an odd post industrial vibe for sure and needs a lot of work. But the rents there are so much lower than in Burlington. And Burly is where I will be mainly working on my non video stuff. From June til November I will be working at the University of Vermont full time on a very fun project. I will still be doing video work, consulting and non profit stuff. But I am very excited about finally having a place to put my feet up for a while. It also gets me closer to Saranac Lake and Mirror Lake. Two fantastic winter destinations that I adore.
The best part about living in Plattsburgh is the commute to work. I have to take a ferry to cross Lake Champlain. I like ferries almost as much as I like skiing.
Anyway, I have been busy working on making connections for my Caretaking: The Untold Story . I had a great convo today with a woman who has been working on the topic of dementia for decades.
I have also been starting to slowly envision where I want Old School Stone: A Climber Looks Back to go. I have a deadline…the Carrboro Film Festival is accepting submissions until August 1. My old mentor Bradley Bethel is the organizer. He helped me get my start in making a living by making short films and video editing. I don’t expect any special favors though lol..he’s a tough critic! But this is yet another film that has been on the backburner for far too long. John, the subject of the film, lives in Carrboro. If I can finish the film, and it gets accepted into the festival…and he can go and sit in that audience and watch it, that will be totally amazing. To be blunt, John is over 80 years old. I want to get this thing locked in while he can still totally enjoy it.
Finally I am working locally on a gig where I am helping someone do a major overhaul of all of their digital assets. They have roughly 50K images in their iCloud Photos. Yep. A lot. And they have images on various older phones and laptops and SD cards and so forth. What the mission is, is to take all of these images and organize them by year and then park them on a new 18TB NAS drive. NAS stands for “Network Attached Storage”. I have had to do so much with file storage and management during my time editing videos and photos, that I have developed a real knack for this kind of thing. I understand drives, all storage media formats, and can switch back and forth easily between Mac and Windows. It may sound like boring work, but I like it. And honestly tons of people are in my new client’s situation right? Who hasn’t lost control of where all their photos and videos are located?
Another highlight from this week was when I was interviewed for a podcast. Pic below…
Howard’s podcast is called Plant Yourself. We had a really great conversation. The interview isn’t live yet, but it’s coming! I will definitely post it here once it is ready. I think it may also be included in video format as well. He asked me a lot about process. About how and why I got into being a documentarian. It was really rad.
Soon I leave my housesitting gig here in Warren. Then I head south in early May to visit my dad. Then I will be in NC for nearly a month, visiting friends, my daughter. I will also be doing a bit of additional filming for Old School Stone.
I will also be taking a Wilderness First Responder (WFR) course with Landmark Learning. I am so so so psyched to be taking this class. The reason most of my work is centered around the outside world is because I spend so much time there. Just check out my Instagram for the proof of that. Being a WFR (again) has been a long time dream of mine. With the WFR I can be on ski patrol, lead outdoor trips, volunteer at medical relief shelters and be well informed for all my own trips, which are often in wilderness areas.
It’s hard to describe the relief of knowing that I will l finally have housing for 4 months. Yeah I am excited about having a place for only 4 months. That’s what happens to you when you are out here in this housing crisis madness…even 4 months in one apartment seems really exciting and miraculous.
So…We made a thing. Check it out at https://caregivingtheuntoldstory.wordpress.com
March 11th, 2022
11:21 AM-Brooklyn Kolache
Snacking on kolaches in Bedstuy Brooklyn at the moment. Reading articles about Ukraine. Still pondering going over there to volunteer along the Polish border at one of the warming and food centers where they welcome refugees. In the meantime, rebuilding my own life here in the USA still…
New York. What a strange place eh? But the kolaches are to die for. My son lives just around the corner. My blue outdated Android phone’s timer is set for me to leave here soon and go get my son’s stuff out of the dryer at the laundromat. He is back in his 3rd story walk up apartment, that we painted together last night, taking a shower to be ready for work today.
Soon we will leave in an Uber and head across the Williamsburgh Bridge and into Manhattan. He works right along the view into the Rockafeller Plaza. I will be heading on into another Manhattan location though. An office building with bright windows and colored couches and my first interview of another person since before I began caretaking for my parents in August of 2019. The last time I had my cameras and mics out to interview someone was likely for my movie 400 Feet Down. I went from making a movie that sold out three local screenings in a row…to barely even turning on my cameras for 2.5 years. I had to turn down work in Nova Scotia, New Brunswick, Newfoundland, Ontario…I gave up invitations to work on material in Norway. But all that is behind me currently. And today I finally get to get back to what I worked so hard to build. I am pretty damn excited about it.
This is an all volunteer project I dreamed up. The topic is dementia. I want to create a docuseries, sharing the deeply personal experiences of those who are caregivers of family members with dementia. Then I will give dementia related organizations the rights to open source share the content on their platforms. I think it will have an impact.
I have my Panasonic GH4, my Zoom H6, Rode Pro, two tripods, a backup GoPro, tons of extra batteries, my question list, my glasses…I have gone through my gear list over and over, rather obsessively, since I am so out of practice. It used to be that a client could call me and my gear bag was literally always well stocked and ready for a shoot. Hopefully I will be getting back to that. It’s been a long wait. And more than that I didn’t even know if I would get back to this point. Glad to be here though.
After the interview here today I will head back to my son’s apartment and backup all the footage from the cameras and mics. Then I will scrub through it all to make sure it’s looking and sounding good. Then tomorrow I head back up North into Vermont. And apparently there is a big old snow bomb cyclone coming through. So yeah! Glad I still have my snowshoes and skis in the car. Sounds like fun to me.
I was able to finally secure a storage unit in Burlington VT. The housing market is so strained right now that even finding a storage unit is like searching for a rental. It’s crazy out here. On Tuesday I begin my next housesitting gig in Warren VT. I have three interviews lined up related to the my video work and social media expertise. Very excited about that! I also have some other interviews popping up to help me cover the bills that look exciting, though not video related. At this point, money needs to start coming in period. It’ll all work out.
And besides all that. I have about 2.5 weeks of gap in my housesitting time…and I might go over to Ukraine to volunteer if things line up.
Something about this house makes me wake up earlier than normal. It’s not just the hilarious dogs that lick my face and stand over me at 6:30 AM. I think it has more to do with the fact that I am living in an actual snow globe and I don’t want to miss anything. I am looking out of the large sliding glass doors down at Willoughby Lake from the top of Hinton Hill. The nearest “town” is Westmore. In the year 2020 the town claimed a total of 357 inhabitants. I think in winter it is about half that.
The snow is coming down hard enough to be a whiteout without any apparent wind. Big thick fat flakes. Hovering. Slowly shifting. Taking their time. And this house is windows all around. I really do feel that I am in a snow globe. I will not be able to describe how happy it makes me to be here in Vermont. How do I explain that simply seeing snow is healing for me? We don’t get to choose what we love, do we? Visibility is about 1/4 mile. It’s coming down so hard that I would not take the wild dogs hiking in the thick forest nearby. At this rate of snow, a full whiteout could easily come and cover up my tracks behind me, while I stood still, unable to proceed for a time. I definitely don’t know the lay of the land here well enough to find my way back. We are on the edge of the Sentinel Rock park. I think there are 350 acres of land that comes right up to the property here where I am house/pet sitting. A massive playground of Vermont wilderness.
I arrived Monday. Today is Thursday. It’s at this house that I find myself truly slowing down. I thought I was slowing down before. If true, then all I can say then is that this is slower still. Slower and slower still. I am back to doing yoga in silence. I sit and just gaze at either the snow or the glacier carved mountains and lake below. I take stock of my life and come up with new understandings daily. Things that surprise me. It’s ever fascinating to me that even at 50, I appear to be a stranger to so many things I have become. I guess it is because it’s much like someone writing a memoir. Even the most plain existence, would still see the writer with a need to continue. Recording what is happening. And mine has been anything but plain. There always is a lot to parse.
Since I have been in Vermont, in general, there is a lot less to say about it though. No wait. That’s not so. What I mean to say is that since I have been in Vermont, there are other things I would rather do, than write…because usually I am in such a place of deep contentment, that writing feels like a distraction. Sort of like now in fact haha. But I promised myself I would write and it finally felt like a good time. Mainly to chronicle some things so that I can come back and read about them someday.
Dave Chontos died.
David lived in NYC and worked in the off broadway theatre circuit doing wardrobe and costume design. I have known David since 1993 or so. He was one of the nicest people I ever met. Having a person of similar age that you know and respect die at such a young age is always hard. But David’s death is unique to my situation and to many others. On Christmas Eve December 26th, 2019-Dave flew out from NYC, leaving his entire life behind, to go take care of his mother in AZ, upon the death of his father. Dave stayed there until May 28th, 2021. He then returned to the city around July of 2021. I messaged with Dave a handful of times over that 1.5 years. He was doing his caretaking at the exact same time as I. We also spoke on the phone once. What I heard in his voice was easy to identify. The worn out haggard voice. The silent desperation from the isolated living with someone with out of control dementia symptoms. Also…in a pandemic. His mom suffered with hallucinations daily. Violent outbursts. Profound confusion. David said the worst part was the night terrors. His mother would wake up at night at random points screaming, walking around the house and reacting to things that were not there. She would be completely inconsolable and not even truly awake. Later, towards the end, David did a lot of lifting, moving her to where she needed to be. I urged David to get support. On the phone I could tell that he wasn’t comfortable reaching out. I urged him to call me whenever he needed to. He never did. I urged him to post for support on the same support forums that I did…I never saw one from him.
When he returned to NYC I reached out to him. He told me that his body was a wreck. He had done considerable damage to his spine from helping move his mother alone. He literally looked, in photos, as if he had aged a decade. I tried messaging him further but he quit responding, even when I asked him about visiting when I was heading to NYC while on my cross country journey.
On Tuesday, I was out with the dogs. I was cross country skiing. Breaking trail across an open field. The wind was gusting up to 30 mph. Spindrift tornadoes whipped their way through the driving snow and sped into us over and over again. It was, for me, heavenly. It was around -10 with the wind chill. The sun was setting. I was in a rush to get back to the house. Then the phone rang. It was my son. Dave had died.
Here is the Facebook post made on his behalf:
We are very sad to share the news that Dave has passed away. He had been recovering from a series of small strokes in mid-January, but last night his heart gave out. They tried to revive him, but Dave won the debate over the timing of his exit.
Whether you knew Dave because you made amazing theater together, because you went to college with him, hung out at Blazing Saddles with him, or were just lucky enough to cross paths with him, we have no doubt your world feels like it lost a brilliantly sparkling light. We also know that Dave left a trove of epic stories in his wake, and we want you to share them here. Please fill the comments with your amazing Dave stories and photos – share your happy, funny, ridiculous, beautiful Dave moments to help fill the hole he’s left. (Your stories and photos might be used at a later date.)
I skied back to the house and have been sitting with this ever since. I know what killed Dave. More than most, I know exactly why he died. And I hate to frame it like this but it’s just got to be said by someone, somewhere. Caretaking is what killed Dave. The isolation. The stress. The unreasonable and awful behaviors that dementia brings out in our loved ones…and the isolation and lack of support for the caregiver is what led to Dave’s health crisis. I do want to blame Dave, in some way, for not reaching out more for help. But that’s the thing with dementia caregiving. You get so isolated that you don’t even remember to ask for help. You are too busy surviving. David’s strokes were a direct result of his caretaking. And I feel angry about that. I feel sad that such a good guy died. I feel angry that because it should not cost you your life to take care of your ailing mother.
While on the phone with my son I thanked him for helping me not become another dead or dying caretaker. For those of you reading this, who haven’t done what Dave or I have done, I am sorry that you don’t get it. But I am also glad that you haven’t had to go through it.
Admit it…it’s really hard to imagine that just sticking around and taking care of someone can lead to your death..isn’t it? But holy shit. I wonder daily about what mechanisms of illness I may have jump started inside of my body from caretaking. I made it out. I am living out my dreams. In the last 3 months I have done exactly what I said I would always do if I ever survived it all. I have gone all in and gambled on following my dreams and keeping my word to myself. I don’t know if I will succeed in finding that dream job or finding a place to affordably settle down. But I am here, in the snow globe, in Vermont. I have kept my promises. You never know when you are going to die or how. If I did right now, I would be okay with it. I would have regrets, sure. Everyone dying does. But I would know that no stone went unturned. And that’s a gift.
From an Alzheimers site:
More than 5 million people live with Alzheimer’s disease. Many are cared for by family members in the home. But what happens to the ones providing constant, stressful care 24/7? Overlooked, these family members often provide care at the expense of their own mental and physical wellbeing. 63% of these caregivers will die during their time providing care, with many family caregivers dying an average of two years before the Alzheimer’s patient for whom they care.
My buddy Dave was in that 63%. I know that he wouldn’t have died from strokes at his age if the isolation and stress of caregiving for his mom hadn’t happened. He was in the 63%, it just took a while to catch up with him. He died after his mom. But it’s the same damn thing. A tragedy. Your own death should not be the price of caring for someone.
Besides that, besides how angry I feel at this. I feel sad that Dave is gone. He was so excited to be back in NYC. He was so relieved to have survived and so ready to get back to his life.
Besides that…well…now it feels weird to talk about anything else going on in my life. I am sad that Dave is gone. I feel surprised, amazed and grateful to my kids and my friends for helping to encourage me to seek a different path than dying from taking care of dad, after nearly dying from taking care of my mom.
On the video editing front, Dave’s death is also encouragement for me to follow through on my plans to start the video documentary series regarding the voices of caretakers of family members who have dementia. I do the first interview, on a strictly volunteer basis, in about 2 weeks. Poignantly I will be doing the interview in NYC, where Dave lived.
Hey! I am being interviewed on a cool local radio station on my new hometurf wayyy up north in VT. Nick Ihley is the host for a show called “TRUTH FOR A CHANGE”
Tune in to this open format chat on WMRW.org. Just go to the site around 9:30 PM this Tuesday February 22nd and hit the Livestream button to listen in. Here is that link: WRMW
I don’t know if we will be talking about @salmonfolkfilms or @rduforest or dementia care or how to make the best pizza dough, but I will wager it will be interesting. Or…at least better than whatever you were going to watch on Netflix. I haven’t been interviewed on radio since @whupfm back in 2019. Pretty excited.
Well…it’s been a while. But come on…it’s always “been a while” when it comes to these postings here on my blog. What can I say? I’ve been busy, but not with work. Still coming off of 2.5 years of caretaking. Still bouncing back from mom’s death and dad’s dementia onset. The disappearing of my parents is still an emerging reality. One thing to come out of those years and the losses of just about everything that was nailed down in my life, is the ending of the needless separation between my “work” life and my “personal” life. I think a lot about how social media allows us to create a personal brand…which is absurd, and quite sad. At least in my opinion. Just be who you are all the time. I definitely get how life is far too short to spend time being someone you are not. And our “work persona” is usually far removed from what we do in the rest of our lives. I am very much into being just one person these days. Not divided.
I got into video, in order to be true to my values. How is it related? I could see, starting around 2009 that video was going to emerge as the number one way to inform and educate a huge number of people simultaneously about the most important issues. I began tinkering with a Flipcam in 2009. Edited some of my first videos back then. Just messing around, you know?
Then I finally got serious about doing video work around 2015 and have been working slowly since then.
Anyway, I have just started back to work after my long hiatus. I have been working on a most unexpected task…a fundraiser video for…get this…a green burial conservation cemetery. I mean…right? Yeah. Crazy stuff. That’s the kind of place mom wanted to be buried. And now my first paid gig in forever is that exact topic. I got to film on location in NC and am now editing in my new digs in Warren VT.
This client found out about me because of a film I made, Bolin Creek Unpaved. Google it! A really rewarding project I did with a non profit group to save a forest, ended up also resulting in paid work that connects to the death of my mom. It’s like I am making the video as a tribute to what she wanted.
Then I got a text from a friend yesterday. Another project I worked on with a non profit group had become a centerpiece of the strategy to save a forest from being turned into a stone quarry. This topic has been tied up in litigation since 2019, the year my film came out. The text announced that the state has rejected the mining permit application! Victory dances will be had. My whole crew of dedicated volunteers and activists down there are all getting together to celebrate. Sure, there will be appeals. The quarry will try again. But now the state AG office has a legal responsibility to defend the nearby state park against the quarry operator…I see no way that the quarry operator wins this fight. It’s just a huge huge outcome. The main person leading the charge told me tonight how much my film helped make this all possible. And it did. And also..the film only took what was already there, and turned the effort into a single source. A one stop shop for all the hard work so many had been doing. A video, a film…can change the world, create real outcomes. But only if it is capturing the hard work already being done. The film doesn’t do the work, it turns the work being done into a format that an audience can connect with. And that’s what drives me, to find that story so that the work others do can have an impact.
I am just overwhelmed with happiness that I followed my instincts to get into video and create films. I am not cinematic. I am not big budget. I don’t have the newest equipment. But so far it gets the job done. Tis a very satisfying feeling.
Speaking of satisfying, I am now in Warren VT. Dad is now actually very happily living in a retirement home in VA and I headed north to where winter still exists. I knew I wanted to live somewhere in VT, but I didn’t know that my first stop would be my stopping point. Look no further. Warren and the Mad River Valley got ahold of me by day three. Now I have a bunch of housesitting gigs lined up as I try to navigate getting paid work flowing in again. Eventually I will buy or rent a place of my own, but for now housesitting is a great way to manage expenses and outflow and a great way to meet the people that live around here.
I will soon be putting out the feelers for more freelance video work in the local area. I am genuinely looking forward to working a lot on new projects, seeing what is out there, seeing what people have to say.
One other thing to report…I am beginning a brand new video series. All volunteer to start. My experience with living with parents with dementia taught me much. Mostly what it taught me is that caretakers caring for family members with dementia are often caught in a nightmare with very little support and in near total isolation. I want to give them a platform to be heard. In mid March I will be heading to NYC to interview a powerful young woman who is committed to raising awareness about the Frontotemporal Dementia that her mother was diagnosed with. I will be bringing along my GH4 and mics and lights…I think it will be a great first chapter to what I hope becomes a whole series.
And finally I can’t wait to get back to my work on the Salmonfolk project. Sheesh! So long overdue. Episode 7 of that podcast has got to get done soon!
More to come. A lot more.
It’s been a very very very long time since I posted a blog update. That long trend of barely ever publishing a blog update is going to be ending. I am about to delete my Facebook account, which is a very odd and freeing feeling. It will also drive me more to post actual thoughts about the world and the work that I do here, right here, on this platform. Does anyone even read blogs anymore? Lol. I guess I will find out.
Update, with brevity. And verve.
I haven’t worked with video content or worked for money at all since about September of 2019. I have instead, been working harder than I ever have, in my entire life, but without pay. I became a full time live-in caretaker for both of my parents in October of 2019. It was going to be a temporary thing. I was just going to help them through a health scare. I packed my bags, traveled to VA from NC…just for a few months. Right? Wrong. I am still here over 2 years later.
My mother died of dementia and cancer in October of 2020. Then I took care of my dad, who has cognitive decline issues as well…and, well…it’s been a long journey my friends. I have aged about a decade in the last 2 years. Sort of like dog years but even longer.
My dad moves into a retirement community at the end of November 2021. That marks the end of my unexpected journey of being the full time caregiver for my parents. I’ll still be hanging out in the town where Dad will be living-Charlottesville, VA.
Over the last 2 years I have turned away job after job. Amazing work travel opportunities had to be turned down. I was to film in Toronto and Nova Scotia. I was invited to film in England and Norway. I had to decline everything. I lost all my paying clients for my social media management accounts.
If you haven’t been a full time caretaker for folks with dementia, you won’t understand why I couldn’t just work while doing it. But if you have been in my shoes, then you know why work was the last thing I could have possibly attended to.
First things first…I won’t be getting back to work right away after Dad moves into his new digs. Oh hell no. This boy needs a serious break for sanity’s sake. I am taking a king sized holiday. My first real vacation in about 3 years actually. I will be visiting friends and camping and skiing my way across the USA for the entire month of December. I just got a lovely pair of classic telemark skis…as well as an equally lovely pair of discounted twin tip freestyle park skis for the lift served action. They will see a lot of use!
Come January I should be ready to get back to work. I said that rather hastily. What I meant is that come January I will need to get back to work, because you know…money!
I am genuinely eager to soon be working once again with clients. Learning to write, edit video, create content, run social media accounts…it’s no fun when you don’t know how to do all that stuff. But it’s a lot of fun for me to help clients who have other things to do while I do those things for them.
I did manage though to do at least one big creative thing during the last 6 months. I launched a website, podcast and an ESRI mapping project.
This aligns with my values and I will be working on The Video Slab stuff while also seeking funding and grants for this long term project.