When the documentary filmmaker Kirsten Johnson learned her dad had dementia, she decided to kill him herself. Over and over again.

The result is the new film “Dick Johnson Is Dead,” which is available on Netflix starting Friday. In it, Johnson combines staged enactments of her father dying in accidental ways (tumbling down the stairs or getting hit by a falling air conditioner) with scenes from their life navigating his memory loss, cognitive decline, and impending death.

The film is both incredibly moving and funny, an exploration of the coming grief and an act of preserving what it is that Johnson is so sad to be losing. The “deaths” are played for laughs — moments from which Dick Johnson is resurrected in defiance of the finality of death, but against the backdrop of a very real, irreversible progression toward that ultimate fate.

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The film debuted earlier this year (before the pandemic fully arrived in the United States) at the Sundance Film Festival, where it received a special award for innovation in nonfiction storytelling.

Johnson this week spoke to STAT from New York about making the film. Below are excerpts from the conversation, lightly edited for clarity.

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Before your dad developed dementia, your mom died from Alzheimer’s. Did your experience with your mom inform you making this film, or even make it possible for you to make it?

Completely, and in many ways. I was really just devastated by her Alzheimer’s. I kept not seeing it coming, the way in which Alzheimer’s gets worse and worse. I would think this is as bad as it can get, and it’d be like, oh no, it became worse. So I really went through that as a period of grieving, and then more grieving, and then more grieving.

My previous film, “Cameraperson,” is an inquiry into memory and going back into all this footage that I shot over 25 years of being a cameraperson. I became very interested in memory and how memory functions because of her Alzheimer’s, and then I became very interested in time and how time functions. And then I was relating that to cinema.

When you’re looking at a movie, you’re not looking at a memory. You’re experiencing something, and you’re often looking at a dead person, like you’re watching Buster Keaton. But Buster Keaton was dead before I ever watched one of his movies and yet his movies are totally alive. So what is that? And that’s how I set upon the idea of making this movie with my dad, as a way of being defiant toward dementia, being defiant toward death. Like I’m going to laugh this time, I’m not going to just do the veil of tears that I did last time.

You say in the film that at first, because of what your mom went through, that when you first started hearing about your dad’s memory and cognitive issues, you thought, “this isn’t happening again, no way,” which I think is what a lot of people feel initially. How did you go from that point of denial to accepting this to the point you could make a humorous film about it?

Sometimes compartmentalization serves people. It helps us function. Sometimes, though, denial and avoidance and silence just let festering things fester more.

I’m really interested in how humans cope with exposure at scale to very difficult things. My father was a psychiatrist. He spent 50 years treating people with a variety of mental illnesses, and he’s someone always looking for a joke. And I think that was one of the ways in which he coped with how much trauma he encountered. So I was trying to learn from his methodology, learn from my career, of how does this craft — whatever craft it is that we have, whether it’s our medical skills or our filmmaking skills — how do we work with our craft to transform pain and difficulty into curiosity, hope, laughter? Because I needed that.

At one point in the film, as part one of preparing for one these fantasy death sequences, your dad is in a casket, and you say seeing him breathing in there makes it less hard. The enactments of his death are generally slapstick and funny, but still, was taking on your dad’s death as your job difficult, even if it was in defiance? 

It definitely had plenty of difficult moments, and yet because my dad has dementia, I was not going to avoid the difficult moments. They’re already in the house, so like, OK, how do we engage with them? Seeing people who work in these stressed positions, who are caregivers of many forms, the people who are doing it with lightness, who are doing it with humor and acceptance of the absurdity or the obscenity of it, that often helps.

The other thing I’m really interested in is images, and how images imprint on our brains — the idea of the indelible image. As I worked over the years, I realized that what is often the unforgettable image is the impossible image. So if you think about the things that have like, “Whoa, I saw this and I can never unsee it,” it’s often seeing something like a body in a position it’s not supposed to be in, or a body in a position that is unfamiliar to you. And accidents and death and disease, they all do strange things to the body. It’s this idea of being haunted by an image. We really file certain things away as, “OK, this is exceptional.” So I deliberately wanted to play with that, and see what would happen if I created an image of my father, like the indelible image of my father lying at the bottom of the stairs, but then he can get back up and we can laugh about it.

In another moment in the film, you ask a woman whose husband had been a pathologist if that changed her relationship with death, just being in the vicinity of it. And so for you, how did making a film about the end of life and death change your relationship with death?

I’m increasingly interested in things I wasn’t interested in before. And I certainly think there’s a great probability that I will have dementia. And there’s a part of me that’s like, “Huh, I kind of can’t wait to see what it’s going to feel like.” I know so much about it from super close proximity, but I don’t know it from the inside. But I’m also like, “Please let me die another way.”

But the film is healing. It has given me a way to do this differently than I did with my mom.

The film was made before the pandemic, but with that, there’s just been so much death in the past nine months, and I wonder if making the film has shaped your thinking about the pandemic and how many people have died.

Like each of us in our own ways, I’m really struggling with how to wrap my brain around this. You know, a million deaths? I talk about the scale of things that people encounter during a lifetime when they’re a professional who really looks at death. Like, I did 225 Holocaust interviews, but I didn’t do 6 million Holocaust interviews, right? And there is a way in which the individual brain may not have the capacity to allow in global-scale pain, and yet that is what is being asked of us. It’s also being asked of us in terms of climate change.

I’m definitely overwhelmed. I’m also deeply interested in the fact that we are now sharing anticipatory grief. I feel like dementia introduced me to that concept. You know worse is coming so what do you do with that? And you know finality may be coming. What do you do with that? This concept of, we’re in the long middle of the pandemic right now, we don’t know when it ends — that’s a very uncomfortable place for humans.

You tell someone in the movie that we all carry parts of our parents in us. And then you ask what he carries of his parents. So I’ll just end by asking, what do you carry of your parents?

From my mother, I know that she keeps showing up. She keeps being here. She doesn’t go away, and I’m comforted by her presence. She had a great love of color and I’m sitting here looking at what I’m surrounded by, and there’s an explosion of color all around me. And I think, that’s my mom.

From my father, I have this wish to listen more and I have this desire to laugh more.

  • Thanks for this piece. I would like to take note of William Wharton’s book Dad. He explored similar though son focus on this topic. One needs to have humor and improv skills to best handle the hills and valleys.

  • a very moving interview . thank you. now I can look differently to what is happening around me.

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