Not everyone has the chance to say goodbye to someone who’s dying. But when they do have that opportunity, it can be one of the most intense moments of their life.
Bay Area artist Wendy MacNaughton is familiar with this process, from spending time with her aunt — who had Parkinson’s — before she died.
MacNaughton said that at first, she was uncomfortable being around her aunt.
“I’d never been at the bedside with somebody who was dying, and I didn’t know what to do,” MacNaughton said. “I didn’t know what to say. I was afraid to really sit and be with her.”
But for MacNaughton, “drawing is a way that I am able to look at things and to be present with people,” she said. “So I started drawing her every day as she was dying.”
Days after her aunt’s passing, MacNaughton received a call from the Bay Area Zen Hospice Guest House inviting her to become their artist-in-residence. The “universe steps in, as it sometimes does,” she said.
During her residency, MacNaughton wrote and illustrated the book How to Say Goodbye. The book, as she describes it, contains “the wisdom of the hospice caregivers: how to, in a way, be present with somebody in the last days of their life.”
KQED Forum spoke to MacNaughton, and nurse Ladybird Morgan, who is the co-founder of the Humane Prison Hospice Project and has worked in end-of-life care for two decades. The two shared their thoughts on how to navigate the difficult process:
MacNaughton shared what the executive director of the Zen Hospice Guest House learned — which are the five phrases that people can say to help them let go, and not leave anything unsaid to a loved one.
The phrases are:
“There are ways to start a conversation so that nothing is left unsaid. It doesn’t change anything, right? We’re still learning. We’re still letting go of a person. We’re still going to lose them. And maybe we’ll always have some regrets,” MacNaughton said. “I don’t think it’s possible for us to say it all and resolve it all: That’s just not possible. But we can do our best.”
In life, MacNaughton said many people are not the type to go right into challenging conversations with others.
“But the end of life is an opportunity to say those things that we’ve maybe been avoiding our whole lives, that we hold so deep in our heart that we want to let go of,” she said. “Two of the five things are about forgiveness, but maybe it’s more about letting go of things that we’ve held onto so that we can let go of the person who we love.”
The Prison Hospice Project’s Ladybird Morgan added that these questions can also be “a pathway to someone getting confirmation that they mattered in the world, and they were noticed.”
“‘Did you see? Did you understand what I meant? Did you really actually feel me?’” she said she imagines a dying person wondering. “‘Yes, I felt you. I saw you. I love you.’”
MacNaughton describes herself as a “doer.” Some people, however, may have to turn off their problem-solving brain in this situation.
“I am somebody who wants to fix things. I want to make things out of things,” she said. “And time and time again, life is teaching me, ‘We can’t fix things. We can’t do a lot.’”
“All we can do is really slow down and open up and be there with somebody in a way that is close and intimate and loving,” MacNaughton said.
Morgan said when dealing with the death of a loved one and trying to find closure, people can seek a place of trust and know that their connection — and love — is real.
“I think the only thing I can say right now in this moment is just hold your memory. Hold your love for this being close to you. That is real and that exists,” she said.
A listener named Erin called in to describe her experience as a kitchen manager at Zen Hospice Guesthouse. She said the experience was a lesson in learning how “food isn’t really about food. It’s about all these other things happening.”
Erin described asking someone what they wanted to eat and “it would be this opening to talk about [how] they escaped the Holocaust, and they want some chicken matzo ball soup.”
One woman wanted to drink beer and milk all day. Another man requested a fancy pot roast that he couldn’t eat.
“He just wanted to smell, and see all the incredible communities that would gather around food,” she said.
Morgan said she got into hospice work because death reminds her that “life isn’t just about me.”
“People are dying in so many different ways: suddenly, dramatically, violently, sometimes with grace, sometimes with planning,” she said. “But there’s many, many ways to die.”
Even though the experience of being at the bedside of a dying person can feel small-scale and intimate, Morgan stressed the importance of remembering our place in the wider world when death is on the horizon.
“What’s really important is taking away this mysticism, and this magical quality, of ‘being at the bedside’ — and [instead] remembering that the whole universe is here supporting us in living and dying,” she said.
“How do we make more space for all of us, to be able to see what our role is in it?” asked Morgan. “Not just the magical people who happen to choose to do the work?”
This awareness of the wider world, and our place in it, is also helpful when considering how you could support a partner or friend who’s losing their loved one. It is natural for people to want to be the perfect support system, acknowledged Morgan, when a KQED Forum listener asked how she could best help her husband as his father began to pass.
“Just be yourself,” Morgan advised. “We want to get it right. We want to do it right. But you can’t get everything right. [So you should] do what you can, when you can.”
She encouraged listeners to “remember that it’s not just about you,” in that there are many other outlets, like nature, art, food, museums and music, with which a person can “nourish” themselves at this difficult time, without their partner or friend needing to be their sole source of solace.
“It’s not just about having a conversation, or making someone talk about something or even going to therapy, which is wonderful,” Morgan said. “But just remember the bigger scope of what’s available to you.”
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