Emily Benner’s mother, Elizabeth, died at home in the afternoon. That evening, Emily sat next to her mom’s body, gently holding her hands and feet by turns as she painted her nails a bright, pinkish-red. Then she did her makeup.
Earlier in the day, Emily and other members of the family had helped wash Elizabeth’s body, applied special oils, dressed her, and for the next two days periodically changed out the melted ice from beneath her body while she laid where she wanted to linger, before her burial at Mt. Hope Cemetery.
“I was very uncomfortable,” said Emily, now a 32-year-old artist living in Paris. “I’d never seen a dead body, never touched a dead body. So that was very weird for me to have to do.”
It could have been a scene from centuries ago, but this was in April 2020. Emily and her family were, to the best of their abilities, following the wishes of Elizabeth, who was diagnosed with breast cancer in 2015. She fought the disease until going into hospice services at home in late 2019. There was a brief crest of hope before the following spring. Long before then, she knew she wanted a home death, and not to be immediately spirited away by strangers.
“My wife was much more alternative than I am,” said Tom Benner, 68, of his Elizabeth, noting both of their children were born with the assistance of midwives. “But I’m a supportive husband. So that was the essence of it — my job was merely to do what my wife wanted.”
It would be fair to think, nothing could have prepared this family for these tasks, but someone did. While alive, Elizabeth had enlisted the support of Lauren Sample, a Rochester-based home funeral guide and end-of-life doula, or ‘death doula,’ for short.
Sample, 59, doesn’t love that title, but at the moment there isn’t any softer language to readily communicate what the role entails.
“It’s not defined easily, because we sort of weave our way in and out of the places where people are finding themselves needing support,” she said.
Death doulas are not social workers or hospice nurses, and they don’t offer medical care. They help the dying and their families navigate practical matters surrounding their last weeks or days of life, and step in to assist with those matters immediately after death. Just as birth doulas provide support when families usher in new life, death doulas are there at the other end of our time on earth, providing support to help fulfill the requests of the dying, especially when those requests are outside of what we consider to be ‘normal’ death and funeral arrangements.
THE DEATH DIVISION
Before the 20th century, it was common for American families to keep their dead and prepare them for their final rest. Between 1865 and 1920, there was a boom in funeral home businesses, with about 25,000 of them established nationwide. Relying on their services has only become more commonplace.
In a culture that doesn’t have as intimate a relationship with death and dying as we once did, it can be a big ask for bereaved families to forego the funeral home and take on the responsibilities of preparing a body for burial, navigating regulations, and all other practical matters.
Each dynamic is unique, and requires different supports. Families might need help figuring out how to have a home death and funeral. A person who is dying may also need assistance with household chores, errands, or respectfully re-homing their belongings and pets after their death. Sample can help with most things people can imagine having to deal with, and so many things they can’t. That’s very much the point.
She’s also adept at being a sounding board for exhausted people who are grieving and grappling with mixed feelings when their loved one is actively dying.
“It can be confusing and quite isolating when someone feels impatient that it’s taking so long to die, but also angry that death is coming so soon,” Sample said.
In some cases, as with Elizabeth Benner, it’s the person facing their own death who is making plans with the doula. But there was the point, of course, when Elizabeth was dead, and the family was confronted with the daunting gravity of putting those plans in motion.
Tom Benner said that was the space of time he felt the most helpless. But Sample sprang into action.
“When my wife died — what do I know? Between that time and burying her? Nothing,” he said. “And even if you explained it to me, I wouldn’t know what to do. First of all, it’s not really a happy time for me, there’s just swirling emotions. But what to do practically? I was useless.”
Sample organized Elizabeth’s family and guided them through the bathing, changing of the ice packs, and other tasks.
“We needed someone like Lauren to be the boss,” Tom said, especially since COVID had thwarted the family’s wider circle’s ability to help as much as they would have otherwise. “She was there to say, ‘This is what we do and this is how we do it, do this and that,’ so I could just grieve.”
FROM LOSS, LEADERSHIP
Sample has been sought out because of her expertise in navigating the fine, gritty details of home deaths and home funerals. Her own experiences have added to her sensitivity.
In 2016, Lauren lost her daughter, Nora, at age 15. While she was in utero, doctors had identified that Nora had trisomy 18, a condition Sample was told was “incompatible with life.” She was warned Nora might be stillborn or live just a few minutes, hours, or days. Despite the odds, Nora survived for 15 beautiful years, Sample said — years she would repeat in a heartbeat.
“Before her birth, I would have done just about anything to keep death at arm’s length,” Sample said. “I was weirded out by it, I found it really distressing to go to a funeral home, where the body looked strange.”
But Sample was forced to begin the process of reconciling herself with her child’s death before she was even born. She gently acquainted her other two young children with the idea as well, instilling resilience in them for the inevitable.
Conversations about what they would do with the baby — “we’re going to read to the baby, sing to the baby, wash the baby” — continued after the devastating news. “I thought, ‘I don’t know how, but we are going to hold this baby,’ Sample said. “And we’re going to love this baby and sing to this baby.’
When Nora was born, Sample’s people were there for her. “If I had said, ‘I need you to put on sneakers and walk to Vermont and get me a cup of tea,’ somebody would have done it,” she said, adding, as a former birth doula, “it was a village I didn’t know could exist around death.”
By the time Nora was 15, she’d had many brushes with death. During a hospital stay in March 2016, it became obvious her body was shutting down, and the Sample family decided to bring her home to die.
“We just piled into bed with her, and told her stories about her life,” Sample said. Nora passed peacefully that night, surrounded by her parents and siblings, who attended to her and spent quiet moments grieving and saying goodbye for three days. They bathed and dressed her, decorated her casket, and buried her in a meadow at White Haven Memorial Park.
“The distance we have from death, it’s not just this physical and emotional and psychological distance that we have from our loved ones,” Sample said. “It’s also the distance of time. When we have more time with them, there are so many more connections to be made. Even when it feels like everything has ended, there is still time for something more.”
ANSWERING THE CALL
Just one month after Nora died, Sample served as an end-of-life doula for Alyce Adams’s mother.
Adams, a 52-year-old Brighton resident, lost her mother, Ellen, at age 92 to a heart condition brought on by old age. Ellen died at home, but also planned to donate her body to the University of Rochester Medical Center through its anatomical gift program. That meant her loved ones had less time — only about 12 hours — to spend at home with her after she passed.
“It was really important to make use of the time that we had,” Adams said. But she and her family still struggled with the idea of releasing her body to the care of strangers so quickly.
Sample came up with an idea for a special send-off. She brought a length of pale cloth, laid it out in Adams’ driveway, and had family and friends write out memories and messages of love and warmth. They wrapped Ellen’s body in the signed shroud. That would be the first impression the medical center workers would have of this person when they unzipped the bag.
The homespun ritual created a focal point and a balm for the family’s grief, Adams said.
She likened Sample’s presence to a shadow, a background figure who helped facilitate a more complete experience of saying goodbye.
“We’re all children when we lose someone,” Adams said. “We all need this concrete help.”
Sample and Adams both acknowledged doulas can be most useful in the case of “anticipated deaths” — ideally, people will get a doula involved before someone is actively dying.
“I’m a firm believer that it’s never too early to contemplate what we might want,” Sample said. Toward that end, she offers services — like working with elders to downsize their belongings as they transition to senior living, for example — to help establish a relationship in advance. “That way I’m not a stranger getting involved,” she said. “I’m just Lauren.”
It’s not uncommon for people who have worked with end-of-life doulas to become advocates for the experience.
“Having a funeral at home makes the death more real,” Adams said. “But it can be helpful to have some people around who aren’t torn apart by grief.”
“I’ve become intro-level passionate about death now because I saw how well it went with my mom,” Emily Benner said. “I say to my friends who have parents who are older or sick, ‘have you talked to them about what they want?’”
The aftermath of her mother’s death was hard to get through, but Emily is grateful she had those tender, intimate moments with her mom while painting her nails and doing her makeup, just the two of them in her parents’ bedroom. “It brought so much clarity and, I think peace, because we knew we were doing what she wanted.”
Rebecca Rafferty is an arts writer at CITY and the co-producer and host of art/WORK, an arts conversation video series created in collaboration with WXXI. She can be reached at becca@rochester-citynews.com.
This article appears in Sep 1-30, 2023.
