Living With Dying articles
A Midwife at the Other End of Life
By Leah Carey
Aug. 30, 2016
MONTPELIER — Nina Thompson is all business – she has a solid business background and her conversation is always driving to a point. There doesn’t appear to be a wishy-washy bone in this woman’s body.
As a program manager and business consultant from Montpelier, you might expect this woman to be organizing events for Fortune 500 companies.
Imagine her surprise when a friend asked Nina to manage a very different type of event: his death.
“I know you’re a hospice volunteer and I know you’re a good program manager,” he said to Nina. “I’m wondering if you would project manage this for me.”
It took Nina a moment to fully understand what he was asking. “I was like, ‘Wait is this an interview?’” she says now with a laugh.
“He was very popular in the community and everybody from the mayor down wanted to come see him and wanted to help,” Nina said. The man, whose name she did not tell me for the sake of his privacy, wanted to see all these people while also being sensitive to the needs of his more introverted wife. “He said, ‘We both have really different needs here and relationships are everything to me. I’m wondering if you think you could balance both our needs at this time?’”
“I said, ‘I think I can. What an honor to be asked!’”
Then they got down to business. “I said, ‘Who should be here when you’re awake, who should be here when you’re sleeping? What people am I managing? Who am I the point person to?’”
“I’m a good organizer, so that helps,” Nina said, calling herself the support person to the family. “I’m not an expert in any specific things [to do with death], but I’m very good at managing information and I can say, Let’s get to your lawyer and ask this. Let’s ask the nurse this. Let’s ask a home funeral guide to walk us through that … My goal is to get them all on the same page and that’s a skill I think I have through years and years of business.”
Nina ended up managing the schedules of about 26 volunteers – who was bringing food when, who was walking the dog, who was sitting with the patient. And then there were the other projects that needed to be handled.
“His nephew is sitting in the other room and he doesn’t know what to do with himself,” Nina recalled. “He wasn’t totally comfortable in the room this man was dying in. So it was like, What does he like? What is he into?”
The patient said his nephew was good with computers, and Nina saw the connection. “You wanted to have all your iTunes downloaded for your wife. Maybe we should set him up doing that,” she said. “We found really thoughtful ways to plug everybody in. And when the time came to let them know that he was dying and the family was arriving, it was my job to email everybody and let them know we no longer needed volunteers. The time had come for his family.”
Throughout it all, Nina continually drew on her practice of Zen meditation. “I’d been able to be in that difficult moment of needing to manage all those people emotionally … My practice totally held me, and then all of those 26 volunteers and that family, through that experience. It was profound.”
After this experience, Nina dove further into the world of conscious dying. She is now the founder and executive director of the Wake Up To Dying Project based in Montpelier, a non-profit which encourages people to explore their own feelings around death and dying through events and online storytelling.
Beyond emergency response
Nina was recently invited to talk with a family whose 80-year-old matriarch has ALS, also known as Lou Gehrig’s disease. There is no treatment and, according to the ALS Association, the disease is always fatal.
Unfortunately, the woman isn’t ready to face the reality of death.
“She isn’t talking about the end,” Nina said. “Her family is starting to really see that things are breaking down and there has to be some planning. But it’s hard to plan for anything, instead of just emergency response.”
While her conversation with the other family members was productive, Nina wishes she could have spent some time working with the patient directly.
“I’ve been asked to just talk a family member through the process,” she explained. “If I had more time, I would have asked to go be with that person who is dying for several times over a week to help her get to the place where she could help her family to not just react in the emergency way, but could react in a purposeful and loving way.”
“It just became very clear to me that we have to do something to engage people more thoughtfully and purposely,” she said recently. “Families often get so overwhelmed that they don’t know how to manage it. They’d rather say no [to offers of help] because it’s just too much energy. So it’s easier to just say, No we’ve got it.”
After her experiences with supporting people through the dying process, Nina sees it as an important service for families that are willing to engage. “I think if you are smart enough to bring somebody in as a point person, I think it’s a much more rich experience for everybody.”
A midwife at the other end of life
Michelle Acciavatti, also of Montpelier, took an interest in helping people through the death process during her time working in the Office of Ethics at Boston Children’s Hospital.
“Boston Children’s is an amazing hospital and they’ve developed some of the most amazing resources for sustaining life, and that comes with a huge weight of responsibility in terms of what you do and do not do,” Michelle said during an interview at her home recently. “It’s very difficult for parents. So I was in this environment in the ethics office and just being called in when people are saying, We don’t know what to do.”
She felt like something was missing in those gut-wrenching conversations. “People are making these life-and-death decisions and it’s ethics, and it’s medical pros and cons, and it’s quality of life – and there’s just something missing in the support that these people are getting,” Michelle said. “Nobody had sat down and had a conversation with these parents that, your child has a terminal illness, or a potentially terminal condition. There was no acceptance that life was going to end at some point.”
She had dinner with a friend and discussed some of her misgivings. Her friend, who was training to be a birth midwife, said, “You should be a death midwife!”
“I had never heard of it,” Michelle said. “She said, There are these sort of midwives for death. They are there to help people with the actual dying process.”
It sent Michelle on a journey that has completely transformed her life. She said all of her friends now know her as the “death lady.” She is a co-host of the monthly Death Cafe, a place for community members to gather and discuss death, in Montpelier. She has become an active hospice volunteer and is in the process of launching a business as a death midwife, Ending Well.
“This is a very natural process. This is part of life. Death and living are a continuum and that when we come to accept that, I think that we can face death very differently.”
Michelle explained that as death care comes more into the public consciousness, “death midwife” is not the only term being adopted by those who offer support. “There’s death doula, there’s life transition guide, there’s thanadoula, there’s soul midwife,” she listed. “Psychopomp is actually coming back. It’s the old Greek word for the people that would literally lead you from the realm of the living to the realm of the dead.”
Having sat with numerous people as they made their final transition, Michelle has observed a similarity among the experiences. “It’s a very small moment. Life becomes very, very small, and not in a bad way. When it ends, it’s really just you and your moment of your death,” she reflected. “People tend to really turn in and away from the world. I think that people can still hear and they can still respond to touch, but their thoughts and their minds – they’re not responding. They appear to be almost in a coma-like state and not responding and I think that’s that you-and-your-death moment, when you’re just facing it and the outside world just drops away.”
Seeing people experience that moment seems to have made a profound impact on Michelle. When asked what she wants for her own death, she responded, “If my loved ones want to be with me, they can be with me. But I just ask that they be quiet.”
The last several months have been spent sorting and separating my mother’s belongings – what will we keep, what will we sell, what will we throw away?
We have found unexpected treasures, along with stuff that has made us momentarily question Mom’s sanity. Why in the world did she keep the blade of a ceramic knife that she broke five years ago? Only my mom knew, and she took that information with her.
Then there was the behemoth in the basement.
There was a room in Mom’s cellar that was devoted to storing approximately 4,000 units of an oral history kit that my parents created back in the 1980s. It was a great idea that came at exactly the wrong moment – a product based around audio cassettes produced just a breath before the world transitioned to CDs.
My dad was a great idea man, but not a great business man. He had some modest success in getting publicity at the very beginning – a small article in Prevention Magazine and a big feature in the Chattanooga Times Free Press – but it never translated into sales.
Thirty years later – twenty years after the divorce, more than ten years since music cassettes stopped being commercially produced – Mom was still housing the faux-leather albums filled with audio cassettes in her basement. Hope sprang eternal for her that someone, somewhere would want them. But, despite decades of brainstorming, we never found the right outlet.
As Mom’s uterine cancer progressed we would often speak in metaphoric terms of how the mass that was settled firmly in the “basement” of her body mirrored the mess that was entrenched in the basement of her home.
Now she is gone. The mass in her body took over and squeezed the life out of her.
I was determined that the mess in the basement would not do the same to me. It has occupied space in my heart and brain for too many years. I do not want to carry that into the future.
A couple weeks ago, we rented a dumpster. Some cousins came to help haul hundreds of boxes out of the basement.
When we started the clean out, the room was so chockablock full that we couldn’t even walk in. Just six hours of work later, it was suddenly empty.
I don’t pretend to believe that if we had gotten rid of The Heritage Project years earlier, it would have made an appreciable difference in Mom’s cancer experience. But I do think it serves as an uncomfortable metaphor about how we approach life: Do we suffer through each day, wishing things were different and worrying that they’re not, until one day it is suddenly over? Or do we take care of the things that are no longer working for us – the things that once seemed like a perfect fit for who we were but are now too small for the person we have become – and face the new day with delighted expectation?
The Heritage Project is now gone. It’s not the end for it that I would have wished for, just like Mom’s death was not the end I would have wished for her.
But it was time for me to shed that skin, just as Mom shed hers eight long months ago.
Mary Oliver was a favorite poet of Mom’s and words from “The Summer Day” keep popping into my head:
Doesn’t everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?