Jolenta is extremely fortunate in that very few people she’s loved have died so far. But on the flip side, she’s also unfortunate. She’s the only child of two parents who live in different states, many time zones away, and she’s well aware of the fact that when they die, it will be on her to carry out all their wishes, manage their assets, arrange their final resting places, and settle all the legal matters that need to be settled. It will be on her to feel the deep sense of loss a child feels, without a sibling to share the emotions. It will be on her to do it all, and it will be painful. And so, I suppose it’s not surprising that Jolenta usually likes to avoid the topic of death—her own or anyone else’s. To her, death is both a distant concept and a heavy burden.
And it’s for this reason that I wanted to live by a book about death for our show. I figured a lot of listeners were in the same boat as Jolenta, walking the line between emotional avoidance and legitimate fears—both knowing that death is inevitable and hoping it won’t need to be considered for a long time. Sadly, in most Western cultures we don’t spend a lot of time talking about death or preparing for it. When it happens, it often hits us like an otherworldly event we never saw coming—even though, logically speaking, we all know that we’ll someday die.
My husband, Dean, and I know this from firsthand experience. We’ve both lost parents and grandparents to whom we were quite close. And in both our cases, we’ve come to understand the importance of accepting and preparing for death.
Dean’s father’s death was sudden and unexpected, and it happened on the other side of the world, on the South Island of New Zealand, where he grew up. There was a lot of shock and pain to process. There was the regret over not having had the chance to say goodbye. And there was the logistical nightmare of taking four connecting flights across the world from the United States to be reunited with his mother, sister, and extended family.
Once Dean arrived, the emotional pain was exacerbated by the pain of realizing his father had never planned for his own death. His finances were not in order. His papers—most of which were impossible to decipher—were spread far and wide across his family business and home. At one point, Dean and his mother and sister considered bringing in a forensic documentation expert to help. In the end, after many tireless hours and a lot of agony, they managed to arrange a funeral and save the business. And all of this was on top of losing someone they deeply loved.
My mother’s death was also a sudden and unexpected event. She had been fighting a severe cold for many months. She’d also been acting not quite like herself. She seemed needier than usual, and I wasn’t sure why. But I knew I’d be there in a few weeks, at the same time I visited her in Minnesota every year. I told her to take good care of herself until my annual visit. And I put my trust in my aunts and uncles and extended family—all of whom still lived in Minnesota—to drag my mom to the doctor if things got truly bad.
But then I got the call—my mother was in bad shape. She was in the hospital. I needed to get on a plane immediately. They didn’t know if she would make it. I booked the first flight I could. The flight was delayed, and then delayed some more. The woman sitting next to me on the plane, hearing my story, said she’d get her husband to take me to the hospital when we landed. Thanks to that woman, whose name I can’t remember, I made it in time to see my mother conscious one last time and tell her I loved her. She went into a coma that night.
As my sister, aunts, uncles, and I waited for the doctors to find out what was happening with my mother, I remained hopeful that there would be a clear diagnosis and an obvious course of treatment. But eventually, it became clear: My mother had metastatic cancer—and it had spread everywhere, including her brain. We could keep her in the coma for as long as we wanted, or we could disconnect her from life support and let her die. No one wanted to be the one to give the order to disconnect. But I remembered what my mother had always told me: “Please don’t keep me artificially alive.” And so I said out loud what no one else would: “Please disconnect her.” My sister and aunt—who were my mom’s legal proxies—delivered the order to the hospital staff. And then we all gathered around her, holding her and telling her we loved her as she died. This was only a year and a half after we’d done the same with my beloved Nanna, my mom’s mom.
It was horrible. The pain of loss. My own guilt over not coming back to see my mom sooner, when she first told me about her extended cold. The angry sense of unfairness in having two people I loved so dearly taken away from me so close together. But unlike Dean, we had the advantage that my mother had planned for her death. She had an advance directive. She had a will. She had my sister and her sister assigned as executors. And she had told me more than once what she wanted to happen to her body when she died—that she wanted to be cremated, and that she wanted her ashes scattered alongside her favorite spot, at her favorite lake.
When we lived by The Art of Dying Well, by Katy Butler, Dean and I recalled our own stories of loss. We thought about what we considered a “good” death. We discussed what we wanted to have done with our own bodies when we die. We completed some important paperwork. And we talked about what we wanted our legacies to be. Both of us said we wanted the kindness we’ve shared with others to live on.
In Jolenta’s case, living by The Art of Dying Well was quite different. It wasn’t about focusing on losses she’d experienced but about confronting the fact that her parents would someday die. This meant having important conversations—conversations that, in the end, were reassuring. While she was talking with her mom, it came to light that there was already end-of-life paperwork in order. It also became clear that Jolenta’s mother wasn’t afraid to ask for help, and in fact already had a team of people she relied on for her needs—including, to Jolenta’s relief, an attorney.
In addition to beginning the process of considering her parents’ deaths, Jolenta also began considering her own death—and what a good death would mean to her. She realized that she wanted an animal in the room with her when she died. She decided on a book passage she wanted read out loud to her in the end. And she talked at length with her husband about what “quality of life” meant to each of them.
In the end, both Jolenta and I felt better after living by Katy Butler’s book. Jolenta felt less afraid. I felt more prepared. And overall, we both felt a little more in touch with the reality of death—as well as what we value most in life.
Dear Kristen and Jolenta,
Just hearing the word death makes me sad. Like seriously, I go into a panic when I think about death.
—MB
Dear MB,
I feel you. I’m in the same boat. I normally try to avoid confronting the idea of mortality at all costs. I even tried to back out of living by the one and only book about death that we covered on By the Book.
I’m never going to tell you to do anything you know will trigger you or make you needlessly sad. But I can say that my experience with getting uncomfortable and exploring what death means to me also helped me explore what life means to me. And that was a wonderful experience.
I went from totally avoiding the subject to realizing that I was more afraid of the unknown than of anything else. (And really, aren’t we all?) But the more I got to know the unknown and define what it meant to me, the less scary the idea of death became in general.
Through planning for my death, I ended up having wonderful conversations with my family. I got a rare chance to carefully explore what I find wonderful, where my priorities are right now, and to connect with the people I love. So that wasn’t too scary.
—Jolenta