I mentioned Kirsten Johnson last week, in my post about Anderson Cooper’s podcast. Johnson is a guest on episode 5, which focuses on anticipatory grief—grief for someone who hasn’t yet died. Johnson’s description of anticipatory grief in the podcast is perfect: “It’s this crazy feeling of imagining the person dead while they’re in front of you and then all the feelings that that brings. There’s a lot of guilt in it. There’s a lot of just confusion in it because it’s almost sort of unbearable. The fact that they’re not quite themselves already and then the fact that it’s going to get worse, it’s like you’re on quicksand or something.”

I did not know that I was experiencing anticipatory grief between the time that my husband had his stroke and died. I knew that every moment was precious, and I constantly felt like I needed to be present, memorizing every detail with him because I didn’t know how long I would have with him. I began journaling during this time as a way to keep track of the details I knew I’d want to remember. Every moment felt precarious. He had profound sleep apnea brough on by the stroke, so we never knew if he would make it through the night. He was always at risk of falling. He was at risk for another stroke. I felt awful, thinking all the time that I needed to remember this moment in case he dies tonight.

The year was maddening because he was startlingly present in a way he hadn’t been before the stroke. I was, too. We were more tuned into each other’s emotional states, checking in regularly with each other about fears and worries. Because of my caregiving role, he had no privacy from me, and we chose to laugh about that—and he sang about it. The injuries caused by the stroke seemed to make it easier for him to be vulnerable with me. He began a tradition of ending each day by telling me what he was most grateful for about me. At the same time that we were experiencing this incredible closeness and intimacy, he was wasting away in front of me. He lost a tremendous amount of weight, he slept all the time, his memory was no longer dependable. There were times I felt like I could see him fading away and I mourned the loss of him even though he was still with me. That is anticipatory grief.

Johnson made a documentary called Dick Johnson is Dead, which is available on Netflix, that captures anticipatory grief with startling clarity. The Dick Johnson of the film’s title  is Kirsten Johnson’s father, and he’s not dead yet but he is in his 80s and had dementia. The film stages Dick Johnson’s death several times, using comic relief to help Kirsten come to terms with his eventual death.

I watched the film last weekend and laugh-cried all the way through it. It’s an incredible film, portraying the deep love Kirsten Johnson has for her father, and showing his aging and dementia without veering into pity. There is no sense that we should feel sorry for Dick Johnson. He is enjoying life to the fullest, getting lots of quality time with his daughter and grandkids. The film manages to show the joy Dick Johnson finds in his life, the joy Kirsten Johnson finds in Dick Johnson being alive, and the pangs of loss Kirsten finds in Dick’s fading away in front of her.  

One scene in the film is of a staged funeral for Dick Johnson, in which he stands behind church doors, listening to the glowing eulogies people deliver in his honor. Even though they know he is still alive, they get choked up expressing what Dick Johnson has meant to them. Dick Johnson himself gleefully listens to the eulogies and then enters the church to applause. While it’s an amazing and affirming experience for everyone, the image of Dick’s best friend sobbing after delivering his eulogy is hard to shake. That’s anticipatory grief: the person is still here, but you’re already trying to figure out how you’ll carry on without them.

In the podcast, Kirsten Johnson says how much it means to her that because of the film, people feel like they know her father. I have the same experience—I love when people tell me that through my blogging or through the obituary, they feel like they know my husband a little bit. That’s one of the ways I keep him alive.

At the end of the film, Kirsten Johnson says, “Dick Johnson is dead. Long live Dick Johnson.” It’s a reminder that a person dies, but their memory lives on. Tom DeBlaker is dead. Long live Tom DeBlaker.