‘It hit me like a ton of bricks. I was running out of time with my dad’

As her father nears the end of his life, filmmaker Kirsten Johnson has made a 90-minute documentary about him, ‘Dick Johnson Is Dead’, to help them both come to terms with the inevitable future

Dick Johnson Is Dead documentary (Netflix)

Dick Johnson is my dad and I really, really don’t want him to die. Although Dick Johnson Is Dead is the movie’s title, my father is not dead – yet.

As humans, we each face radically different destinies, yet one thing we all share is our mortality. The high stakes of being alive and loving other people mean that at some point we must inevitably face the pain of loss. And yet, we never know when that loss is coming.

Many of us turn to denial as a coping mechanism until there’s no other choice but to face death. But my father said that he was willing to face the pain with me. And that’s how we decided to turn to cinema and to imagine a movie not as a product but as a defiant grieving process.

A few years ago, I had a dream in which a man I didn’t recognise was lying in an open casket. He sat up and said, “I am Dick Johnson and I’m not dead yet!” It hit me like a ton of bricks. I was running out of time with my dad. Suddenly, I wondered how cinema might help me to do the impossible. Could a movie keep my father alive forever?

My dad and I, along with a remarkable team, made the film together in the spirit of an existential experiment, portraying the different scenarios in which my father could die. “Can a movie bring a person back to life?” we asked ourselves as we made the film. “Can we defy and transform grief by laughing at it?”

What I didn’t know – as I imagined what it might be like to create a comedy with my father about facing his death together – was that dementia was waiting in the wings for him.

Alzheimer’s brought out absurdist humour in my mother that was both completely like her and unlike her

I already have experience of dementia. My mother, Katie Jo, died in 2007. As the twenty-first century dawned on my family, it slowly occurred to us that Katie Jo had Alzheimer's. I hadn’t heard of the term “anticipatory grief” before she was diagnosed, but once she was, I certainly started experiencing it.

When I look back at that time, I say, “I cried for 10 years straight”. My mother’s illness robbed her and the rest of us in such an incremental and degenerative way that I grieved each twist of her downward spiral like one of a seemingly endless chain of losses before death.

But the experience wasn’t without its moments of raucous laughter. The Alzheimer’s brought out absurdist humour in my mother that was both completely like her and unlike her. 

The manifestation of her Alzheimer’s particularly affected her visual senses – she would be afraid to step on a shadow because she thought it was a hole, she would imagine that what she saw in front of her was behind her and refuse to sit down, and she once thought I was trying to throw her into the water when I was trying to help her get out of a boat.

One day, we were sitting close to each other in the backseat of a car, our legs touching. She started to giggle and then to laugh as hard as she could. I asked, “Why are you laughing?” She could barely catch her breath, tears were streaming from her eyes and her smile lit up the world.

Still laughing, she leaned toward me conspiratorially, whispering “I don’t know how this happened, and I don’t know what I am going to do about it, but I have a THIRD LEG!” I told that story at her funeral.

The filmmaking process has transformed our anticipatory grieving process into a strange celebration of love

Dick Johnson Is Dead is as much about my mother as it is about my father. Cinema has given so much to me in my life. Watching movies and making them has given me survival skills I didn’t even know I needed.

Just as my relationship with my father has taught me, filmmaking constantly reminds me to trust the process and attempt to fully respect other people, even as I must grapple with the shame of my own shortcomings, failings, impotencies, and blindspots.

By using the tools of documentary and fiction, by attempting to film the present and imagine the future, by questioning the space between life and death, the filmmaking process has transformed our anticipatory grieving process into a strange celebration of love.

Making Dick Johnson Is Dead is our way of facing the unexpected pain of this life in the hope that it will lead us to love and laughter. We all so desperately need it these days.

The documentary Dick Johnson Is Dead , directed by Kirsten Johnson, is on Netflix now.