How it felt to put my mom in care and lose her right after

Cutaways is a personal essay series where filmmakers tell the story of how their film was made. This Hot Docs 2023 edition by Denys Desjardins focuses on his film I Lost My Mom, which immerses us in the personal experience of the filmmaker and his sister as they try to ensure their mother Madeleine can end her days with dignity.

When I realized a few years ago that I was slowly becoming my mother's parent, I felt the urgent need to document everything my sister and I were going through as her caregivers. It was by making my documentary that I was able to better understand the reality that my mother was living. But I couldn't imagine how it would end: with me having to put her in a long-term care centre and then losing her right after.

I've been making films for 30 years and family has always been central to my practice. I am the man with the camera in our family; it's a role I inherited from my father, who had been making family movies long before I was born.

My mother had already been in a number of my films, either before or behind the camera. But she had recently become a key focus of my work, especially since Le Château (The Castle, 2020), which documented her life in a seniors' home until the day its management requested that she be put into care. It was a major blow for my mother, my sister and I to learn that she wouldn't be able to end her days in her "castle." 

It was then that I thought of making a second feature to chronicle what came next.

I promised myself that I'd film my mother right to the very end, even if I had no idea how it was all going to pan out. In fact, I often had to shoot on the fly — for example, when a crisis occurred or when there would be a change to my mother's state of health. I documented the entire process of getting her into care. But the situation got seriously complicated when the pandemic hit.

My mother had attended the premiere of Le Château in March 2020. Two weeks later, the Quebec government barred family members from visiting the CHSLDs (centres d'hébergement et de soins de longue durée). I was literally in the process of filming my mother in her long-term care centre when everything suddenly ground to a halt.

My mother was stuck inside the care centre and I was outside with my camera, unable to enter or even speak to her. There were no phones in any of the rooms. I was drip-fed information by the staff, who were on constant rotation, with employees coming in to replace those who fell sick.

Then I got a call from a doctor who I didn't know and who didn't know my mother either; she told me my mother had a lung infection and that they were doing everything possible to treat her. 

She had three COVID tests and all were negative. Still, her condition worsened and she went into respiratory distress. I still couldn't come and see her or talk to her because of the protocol that required death to be imminent before family members could be allowed in. It felt extremely cruel. I firmly believe that not being able to have family caregivers played a role in the deaths of many of the 5,060 seniors who died during the first wave in Quebec.

When you make a documentary, the people you film are like the actors in the film — but when you can no longer film the actors, then you have to find a solution so that the documentary can continue. That's how I became the central character in this film about my mother. I had no choice but to film myself to tell what I was going through.

Every day, the media reported the deaths that were occurring in all the Quebec long-term care centres, especially in the city of Montreal. While I was in front of the centre where my mother was, I could film the morgue trucks. I always had in mind that my mother could be in one of those trucks as I was filming.

As a filmmaker and especially as a son, it was extremely difficult to make a film about a situation that was simply beyond our control. I spent my days on the phone trying to convince the staff that it was necessary for my mother and I to reunite before it was too late. The film became my reason for living until I could find my mother. The suspense was unbearable (which is what you'll find out by watching the film). 

It's obvious that the pandemic upset the fragile balance within our long-term care public system. Really, all of the failures we witnessed only underscore the bigger issue — namely, our relationship to illness and aging, which is reflected in the poor treatment we reserve for seniors in long-term care.

When you see my movie I Lost My Mom, I hope you think about what family caregivers really went through with their loved ones during the pandemic. This film is a testament to the memory of my mother and the 5,060 seniors who died in Quebec's long-term care system during the first wave.

I Lost My Mom screens at Hot Docs 2023 on Tuesday, May 2 and Friday, May 5.

This essay is part of CBC Arts's coverage of the 2023 Hot Docs Festival.