Her father, Dick Johnson’s dementia diagnosis was what inspired Kirsten Johnson to make Dick Johnson Is Dead, a fanciful documentary in which Kirsten imagines various scenarios for her father’s death and makes him act them out — complete with make-up, fake blood, stunt people… the whole nine. It all culminates in a tragicomic fake funeral, where parishioners know Dick isn’t really dead but grieve anyway, in a surreal scene that makes you wonder who’s performing for who.
Hearing what it was about (dementia!), I initially avoided it, the way I do virtually all movies about death and dementia. It’s not something many of us are eager to relive. Yet when I finally saw it, I found it not only wonderful, but weirdly uplifting. Something about the way Johnson shifts seamlessly from history to memory to imagination, constantly filling the cracks between fiction and non-fiction, allows us the space we need for the magical thinking we require without ever feeling like we’re lying to ourselves.
It’s a hell of a trick, but it’s one Kirsten Johnson may be uniquely suited for. Growing up in a family of Seventh-day Adventists who were always convinced the apocalypse was about to start, she says thought a lot about the future. And unlike Catholicism, Johnson says, Adventism didn’t have a tradition of visual expression for their ideas about Jesus and Mary and Heaven. Which in some way made her do the work on her own, developing what she calls an “intense visual curiosity.”
She’s put that into practice over the past decades as a prolific documentary cinematographer, though in the process worried that she wouldn’t be able to have a family. She eventually had one, with the help of an egg donor and a gay couple she now co-parents with. I spoke with Johnson this week, about how her dad is doing these days, some of the scenes she wanted to shoot but couldn’t, and trying not to compare your kids’ childhoods to you own.
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I see you’ve got a special background — or is that in the picture? [Johnson moves the picture around so I can see that it’s a printed picture of her father’s face attached to a popsicle-stick thing]
It’s a Dick on a stick. Dad is here… it’s so crazy, I’m in the middle of moving his room out, and those are literally my mom’s ashes behind me. They’re the best Zoom background ever.
Were you moving him there or…
Dad is now in a dementia care facility. He has been here with me [in New York] for the last three and a half years, where the film is set. But now he’s down in D.C. So we’re moving these shelves out in a little bit. Box of ashes is the last thing on the shelves.
Was there a turning point or something that made you decide you needed to move him there?
Certainly COVID. Honestly, probably in September of last year, it was pretty clear to me I wasn’t going to be able to keep him home with me much longer because he was waking up so much in the middle of the night that I was not getting proper sleep. And I was starting to have heart palpitations because I was so stressed by the lack of sleep, but I was totally unable to conceive of moving him. Then when the pandemic started, I was traveling, so my brother came up and took him down to live with him in D.C. And it’s just been beautiful for the two of them to have a chance to get to live together and also for my brother to understand how challenging it is to be with dementia on a 24-hour basis. He and his wife together were able to have the lucidity to say, none of us can do this anymore because my dad’s very much himself as he is in the movie, and yet he has no sense of time. So it’s like he can wake up in the middle of the night every hour and you have to wake up with him or else he’ll be out the door. You have to be able to function 24 hours a day as a human being taking care of him, so he needs multiple people to be able to work all of his time shifts, basically.
How does he like it?
The place is fantastic. He likes it. He likes the food and the people, but it was wrenching to put him in. I went down to visit him for the first time about a month ago on his birthday, and he was just like, “please take me home.” I was like, oh, you’re killing me, man. So it’s hard.
I assume he can’t remember all the reasons that he’s there in the first place every time he wants out, right?
That’s right. I think he does forget that he has anywhere to go or that I could come get him, but then me being there, he was like, ‘The car’s right here. Why aren’t we leaving?’
This is one of my things about the film: it’s an ongoing process. It’s not finished yet in any kind of way.
Can you tell me about your upbringing with your father? What it was like, where you guys lived, what kind of childhood was it?
I had an extraordinary childhood. I had two very loving parents. We lived in a wonderful neighborhood called Beaux Arts Village in Washington State. It’s a community that shares a lakefront together. So I grew up in the big trees near a lake, and my parents were both raised as Seventh-day Adventists and that was their entire world in many ways. We went to church every Saturday, but the neighborhood we lived in and the neighborhood kids weren’t Seventh-day Adventists. So I sort of had two worlds, but I went to a Seventh-day Adventist school. At that time, Adventists thought the apocalypse was coming. We may think the apocalypse is coming now, but in some ways you can say the apocalypse has been coming for a long time and it hasn’t happened yet. I thought a lot about the future as a child. I didn’t feel worried because I had a really wonderful world I was a part of, but I thought a lot about Heaven. I had a brother who was really interested in fossils. Traditional Adventists believe that the world is 6,000 years old, but my brother found fossils that were 32 million years old, and my parents accepted that.
In the same way that movies were… now Seventh-day Adventists will watch movies. In fact, thrillingly, there were reviews of [Dick Johnson Is Dead] in the Adventist Today and Spectrum Magazine, which are these Adventists magazines, but at the time of my childhood, that was verboten territory. But I watched TV and I had a life of imagination for sure.
Then with your kids, what will their upbringing be like, will it be a lot different than yours?
What a wonderful question. Their upbringing is radically different than mine because they’re in a radically different period of history. They are also not my biological children. They were born with an egg donor. I am co-parenting with two gay men, Ira Sachs and Boris Torres. We live next door to each other in New York City. The kids go back and forth between the two households, so they have three very different backgrounds. But this year with COVID, we ended up being in a borrowed house of a friend up in Connecticut and I had this constant feeling of returning to my own childhood with them. We were going swimming in the lakes, we were going bike riding — all the things we never do in New York City. I thought a lot about how, in some ways grieving never ends, but people never die. My mom’s presence, my dad’s presence was so with me this summer with the kids out in this landscape, that was like the landscape of my childhood.
What was that decision process with the co-parenting and everything?
Well, it’s literally just this mind-blowing story. Basically, I was traveling, filming a great deal throughout my thirties when my mom had Alzheimer’s and I always imagined I was going to have children, but I really was so emotionally connected to my mom during that period, I was sort of aging with her in some ways, losing my own memory along with her.
I was also filming in some incredibly intense situations, in Darfur, Liberia, and Afghanistan, and it was getting more and more difficult for me to remember where I had just filmed. I think that’s a protective mechanism for my brain, given how intense and difficult the situations were. Cameraperson is very much about this, but I got back from weeks and weeks of filming in Sudan and my mother died the next day after I got back. I wasn’t with her. I was so unprepared for her death, even though I had been grieving her loss for almost a decade because of the Alzheimer’s. I just got this knowledge. I was like, “Oh, I am having children.”
It was just that clear, and I’ve never had that happen to me in my life, something hitting me like a bolt of lightning. I was dating a guy at the time and I said, you know, hey, can we have some kids? And he was just like, “What are you talking about? You’ve been in Sudan for five weeks.” And he and I really loved each other, but he really didn’t want to have children. Of course, he has children now. This thing of what people don’t know about themselves yet…
So we finally broke up and I started looking into possibilities that I didn’t feel comfortable with. As an older woman without financial stability, the adoption agencies weren’t very into me. I looked into sperm donors and I searched for several years. Then I was at a Sundance party talking to a friend and this fellow filmmaker who I’d met once before was walking by and overheard me talking about, what am I going to do? And he said, “Oh, me and my boyfriend are really interested in having kids. Do you want to get together and talk about it?”
I said, yes, because I knew I had never wanted to do it by myself. I didn’t want the children to not have a father. I didn’t imagine that I wanted them to have two fathers, but it was an amazing process. It took us three and a half years of trying, and at a certain point, it was definitely like, I’m too old. I sort of said to them, you should really try to do it with someone else. And they were like, well, uh-oh, we really want you to be the mom now. So that’s when we decided to go with the egg donor idea. We implanted two eggs because we didn’t think that anything would work, and two weeks later I was pregnant with a boy and a girl and the children are now eight years old.
Part of the catharsis of watching this movie, I feel, is that it’s you’re giving your dad the sendoff that we all wish that we could. Do you feel like, having a mom that had Alzheimer’s, that you’re doing some of the things with your dad that you’d wished you’d done with your mom?
Oh, definitely. And you talk about the sendoff — we did a great job for my mom’s funeral. She would’ve loved it. She was one of those people who put on a good party, set an amazing table… she really knew how to give a good send-off. And I just remember the feeling after the funeral, she doesn’t get to see everything we did and I don’t get to hug her. So in some ways, I would say the funeral was as much for me as it was for my father. I really wanted to hug my father after his funeral, and I got to.
Are there important things that you learned from your mom’s passing? When my grandmother died of Alzheimer’s, I remember hearing that you’re not supposed to quiz people on who they recognize and what they remember because it’s traumatizing for them. And so there were all these things that I did that I learned afterwards were supposedly bad things to do, but how could I know at the time? Do you feel like you get a second chance to do things differently or better or having more knowledge now?
That’s so interesting that you were told that. I’m not sure that that was right. I think how cool that you were having a dialogue with her. How did she respond?
She just always seemed confused. She had a much steeper decline than it seems like what your dad has. It was pretty fast actually. Once we found out it all sort of went at once. She lost her personality pretty early on I would say.
That’s what’s just so devastating, the loss of personality. When people become mean, are so afraid or so anxious. That’s the thing I think that’s extraordinary about my father’s situation, he’s not losing his personality. He doesn’t know where he is or what the time is, but he will say, “I just want to make sure you know I love you.” It’s just like, oh my God, amazing. But also challenging to hear that 7,000 times a day. But I’m deeply interested in the fact that this world is so much more complex than we can ever understand. That we each have these deep blind spots. That we cannot know certain things until we’ve experienced them. So I can’t know what I will feel upon the death of my father, even though I’ve practiced a million times now.
That was the project of this film was to stay engaged in the not knowing. So not only did I learn something, this movie was set up so it would teach us how to make it. I was saying to all my wonderful collaborators, how do you want to die?
So you laughed when I said, how do you want to die? How do you want to die, Vince?
Great question. I don’t know. It’s hard to know whether you want to have the instant one or the one where you get to say goodbye first. They both seem good and bad in their own ways.
That is the crux of it, isn’t it? Nicely said. Yeah, that is hard to know.
I don’t. I’ve seen it both ways and I don’t know which one’s better, so…
Right. And I think one of our challenges is why we’re in denial about death is some of us have seen it worse, right? We’ve seen the worst possible outcomes, or we’ve already experienced pain that’s so intense that we’re just like, “No, thank you, not thinking about that.” Or I can think about it in a movie, but I can’t think about it in real life — which is what we were trying to mess with in this film.
Exactly. So with all the death scenarios that you’re dreaming up in the movie, were there ones that you wanted to do that were more complicated or that you couldn’t film for whatever reason?
Oh, yes. I really wanted to put my dad out on an ice floe. I really did. I wanted to set him on fire. And it’s just classic filmmaking. Like, oh, we don’t have enough money to do that. Well, this time I got enough money to do it and then our protagonist can no longer do the things that I wish him to be able to do, which is just this profound metaphor for the whole project. That it’s already too late for me to push him out on an ice floe by himself.
The funeral that happened in Seattle, did you dream that whole thing up or what were the circumstances?
I sure did. I literally dreamed it up. I had a dream that I saw my dad in an open casket, and he sat up and said, “I’m Dick Johnson. I’m not dead yet.” And that immediately gave me this idea of, we could do this funeral while he was alive. It meant reaching out to the pastor of our church, reaching out to this whole community of people who’ve known me all of my life, and known my father all of their life. We did a multi-camera shoot. We had five different cameras. I had initially imagined wanting to have my dad in the open casket upfront, but my brother was like, “Over my dead body.” And he was right. It would have been a terrible idea because people wouldn’t have been able to go there emotionally.
What we did was, they experienced it as if he was dead. They arrived at the church. He was not there. I was there greeting them. They knew he was alive, but he wasn’t there. And they also knew he had dementia, so they also knew they were losing him. I’d asked everyone to speak in the past tense. Everyone but my brother did that. My brother was resisting all the way and now he’s a fan. To do the funeral was just an extraordinary gift for everyone I believe because everyone got to see him again at the end of really going through his funeral.
What was actually in the casket during that?
So dad was in the casket, but the casket was green-screened onto the stage.
Then the guy that was really crying, did someone comfort him?
That’s such a great question. I wasn’t there. I think if I had been there with a handheld camera, I would have comforted him. I wouldn’t have held that shot. But it was John Foster who was one of the wonderful camera people working that day, and he was on a locked-off camera. I had said to all of the camera people, feel empowered. These are your positions. You’re on a tripod, but film what is meaningful to you to film because I know they know how to do it. That’s what we do.
Similarly, Nadia Hallgren came and took the camera from me when I was standing behind the window with dad. And then she shot that incredible shot of dad walking down the aisle. If I had shot it, I could not be in the moment of the family with him that she spun around and there we all were together. So there are these impossibilities of me doing everything.
That’s what I think this film affirms, that we must do these things together. We must make multiple attempts. You don’t just have one conversation about someone’s dying. You have multiple conversations and if we try to do it all together with some kind of love, it might make it sustain.
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‘Dick Johnson Is Dead’ is available now on Netflix. Vince Mancini is on Twitter. You can access his archive of reviews here.
