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 My blue outdated Android phone’s timer is set for me to leave here soon and go get my son’s stuff out of the dryer at the laundromat.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.