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This Woman Guides Dying Mainers Through The End Of Their Lives

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Nick Schroeder
/
BDN
CORNISH, Maine -- Molly "Bones" Nelson, a certified end-of-life doula, stands at her pumpkin farm in Cornish. Nelson is a "death doula" credentialed by the International End of Life Doula Association, and the subject of a new documentary screening as part of the Camden International Film Festival.

CORNISH, Maine — There once was a man who lived on a hill in rural Maine. He was 97, and had no living family and few friends. He had neighbors, but most of them were half his age or younger, and the man could sense that they viewed him with reserve. This bothered him, so he hired someone to help him figure out the problem.

“He said, ‘The neighbors don’t understand me,’” said Molly “Bones” Nelson, who offered her services to the man during his final days. “‘I’ve been here for 50 years and they fish on my land but they still think I’m the crazy old guy they can’t talk to.’”

Her solution? Throw a party.

“He kept telling me, ‘I’m not dying; I’m graduating,’” Nelson said.

Nelson is a death doula. She helps people with the emotional and psychological work of confronting the terminal stage of life, whatever that entails. Often, her work looks like talk therapy, working through death’s thorny questions with those facing them. She also works with clients who have lost someone suddenly, such as in a miscarriage or abortion. In this case, it meant helping a man find a kind of happiness at the end of his life.

To prepare for the party, the man and Nelson baked cupcakes that looked like skulls, crafted a tasseled cap for him to wear, and painted a mural of scenes from his life. They had partygoers write questions they had about death — even unanswerable ones — and throw them in a bowl. Then they played a game: pick a stranger at the party and take turns answering questions from the bowl.

“We played that game for three and a half hours,” Nelson said. “People didn’t want to stop.”

Nelson is the subject of a locally screening documentary, “death and her compass” by the California-based filmmaker Annie Munger. The film is part of the Camden International Film Festival, which runs virtually through Sept. 26.

While they aren’t considered medical professionals, death doulas perform a work that has existed around the world for centuries. In present-day America, the kind of end-of-life care work they provide is something of a lost art.

“Our elders get put off to the side,” Nelson said. “Older people have a ton of wisdom and experiences to share about their lives.”

The cost of in-home elder care has skyrocketed in the U.S. even before nursing homes began facing staffing shortages and enhanced risk of infection with the coronavirus. The trend leaves little time and resources for talking through the end of life.

But it’s often no easier at home. The vast majority of older people — 88 percent — prefer to receive government assistance to age at home rather than receive care in a full-time nursing home or senior living facility, according to study by the Associated Press-NORC Center for Public Affairs Research published in May. That can push the expensive and time-consuming work of caring for elderly people onto families, who struggle to absorb the often-invisible costs of managing a family member’s physical and mental health, memory loss, food and other needs while juggling their personal and professional lives.

“Death is a huge part of life,” she said. “You’ve had all this amazing growth, adventure and experience. If you don’t process it and have those difficult conversations, it’s like skipping dessert.”

Nelson likes to let her clients lead the process. In the initial phase, they hang out, talking through fears and memories, anything of significance. The dying person supplies their own spiritual beliefs, and she works with what they give her. Big religious and existential questions inevitably come up, but Nelson mostly works with relationships on the mortal plane. (Nelson keeps information from clients confidential, but others, like the 97-year-old, allow her to discuss their cases in general terms after their passing.)

Then, Nelson works with them to design a “legacy project,” something they can leave behind to friends and family, or to the world, that doesn’t neatly fit in a legal will. It might be a party or it might be a quilt, a donated plot of land or a long poem she writes with the dying person’s help and reads to them when fear rides high.

Nelson learned the trade with the International End of Life Doula Association, a training organization founded by New York hospice worker Henry Fersko-Weiss in 2003. Fersko-Weiss was a social work manager at the largest hospice in New York City, accepting roughly 500 patients a day. While he saw them receive adequate medical care, the sheer volume of patients needing hospice care meant that some needs were going unattended.

“I kept seeing these gaps,” Fersko-Weiss said. “As dedicated as the clinicians are, unfortunately the structure and logistics of hospice made it difficult for clinicians to spend a great deal of time and do deep work with people who are facing death.”

Something clicked when Fersko-Weiss talked with a friend who was becoming a birth doula. He trained to become one too, eventually modeling an end-of-life doula program from its teachings about helping expecting parents usher babies into the world. He could train volunteers to be present for dying people in a way similar to those learning to be birth doulas.

Nelson is the only one in the state formally credentialed through international association, which offers a rigorous certification process. There are roughly a dozen working death doulas in Maine who have trained through the association or the End of Life Doula Alliance, which was founded in 2017.

Nelson, 57, took a long road to this line of work. The nickname “Bones” is unrelated to her profession — a scrawny child, she’s had it since youth — but many clients find as much humor in it as she does. She moved to rural Maine from New Jersey at age 18 and has been farming ever since. Today, she primarily grows pumpkins.

Death has been a part of Nelson’s life since birth. She was born with a heart condition, a thin-walled aorta that’s “shaped like an hourglass.” Doctors have told her that it “could explode at any moment.” In 2007, she had a stent put in her heart, and it tore through two layers of her aorta. But she survived and continues to farm, hike and ride dirt bikes.

She’s also lost those close to her. Nelson’s mother died by suicide at the age of 82, after multiple attempts during her life, and her father died of cancer in 2013.

“I’ve had a lot of healing to do,” Nelson said.

Nelson takes death seriously, but doesn’t necessarily see it as a grave subject. It’s easy to imagine her combination of folksy wisdom and well-timed humor softening some thick layers of fear. As shown in “death and her compass,” Nelson’s sessions with clients seem much less like a psychological evaluation or transcendental ritual than two old friends just talking.

Nelson said that she “doesn’t believe in death” after a life spent outrunning its shadow.

“I got a T-shirt that has a picture of a sloth on it. It says: ‘Live Slow, Die Whenever,’” she said with a laugh.

The sentiment captured the way Nelson has come to think about the subject.

“I don’t feel rushed because I don’t feel like there’s an end,” she said. “If I don’t get to ride my dirt bike across Mongolia by the time I’m 60, so what. I’ll just do it next time.”

This story appears through a partnership with the Bangor Daily News.