Dying can be a taboo topic.

— Enter the death doula.

Laura Lyster-Mensh at Congressional Cemetery with a faux skeleton. She is the cemetery’s resident death doula.

‘It feels as if our culture is very afraid of death, and that’s not good for life,’ said Laura Lyster-Mensh, resident death doula at Congressional Cemetery in D.C.

By

A group of people gathered at Congressional Cemetery in D.C. on Saturday morning for an unusual reason: to practice dying.

One by one, participants reclined on a makeshift bed, as Threshold Choir — a local singing group that comforts people near the end of life — serenaded them.

The exercise was led by Laura Lyster-Mensh, Congressional Cemetery’s first-ever “death doula.” On Saturday, she held the inaugural “Death Doula Day” — the first in a series of weekly events at the cemetery to encourage people to talk openly about death.

It’s part of a nationwide death-positive movement — the idea that it’s healthy, rather than taboo, to talk about death and dying. In Mexico, for example, the Day of the Dead is an important tradition of remembering loved ones and “commemorating death as another element of life.

Threshold Choir volunteers performed “song baths” to emulate the experience of people who are visited by the singing group at the end of their lives. The choir started off with a tune by its founder, Kate Munger, called “You Are Not Alone.”

“The room was spellbound and very moved,” Lyster-Mensh said. “We were all very present.”

For participants like Ariel Casey, it offered solace. She has lost six people in the past two years.

“Three to heart conditions, one to cancer, one to murder and one to simple old age,” said Casey, 42, who lives in Wheaton, Md.

When she saw a notice for “Death Doula Days,” Casey said, “I felt a call.”

The session was comforting, she said, adding that she plans to attend more Death Doula Days in the future.

In her new volunteer position at Congressional Cemetery, Lyster-Mensh is trying to make the subject of mortality more approachable.

“It feels as if our culture is very afraid of death, and that’s not good for life,” she said.

Lyster-Mensh will hold Saturday sessions for activities such as obituary writing and a card game called the Death Deck. There will be speakers, including Rosie Grant, who went viral for making recipes she finds on gravestone epitaphs, and plenty of cake for participants to eat.

“The idea is to come together and have courageous conversations about death, and then also enjoy life,” she said.

Lyster-Mensh became a death doula — which is also referred to as an end-of-life doula — about a year ago. Unlike labor doulas, who focus on childbirth, death doulas aim to ease the daunting dying process for people in their final days, offering emotional, physical and spiritual support. Death doulas do not address medical concerns, and they differ from hospice chaplains, she said, as they are not religious professionals.

“I hold people’s hands,” said Lyster-Mensh, who is also a writer. “That’s mostly what I’m needed for.”

Her decision to become a death doula came after her father and a close friend died in 2014, and in both cases, “they didn’t leave me messages. They didn’t sum things up,” she said.

“That prompted me to think about what people could do to have a good death, and leave things behind the way they would want them to be organized,” Lyster-Mensh said, adding that she believes some people fear death so much, it interferes with their appreciation of life.

Death doulas help people live out their dying days as they choose — whether that’s reflecting on regrets, calling loved ones to say goodbye or simply sitting still.

“I don’t think our job is to change their emotions, it’s to walk alongside them in their emotions, and let them be authentically them,” Lyster-Mensh said.

For dying people who don’t have someone to hear their thoughts at the end of their lives, it can be cathartic and calming to share them, even with a caring stranger.

To become a death doula, Lyster-Mensh took a month-long course, which covered vigil planning, rituals and ceremonies, active listening, signs and symptoms of dying and other death-related topics.

During her training, for instance, Lyster-Mensh learned that although the human instinct is to encourage others to eat and drink, if a dying person refrains from consuming anything, it’s actually “better for the body in a lot of ways,” she said, adding that animals behave similarly when they’re dying. “It’s a natural part of things.”

Similarly, if a dying individual no longer enjoys their favorite music, that’s a normal progression, too. “Music can sound different to people at the end of life,” Lyster-Mensh explained.

Valoria Walker, an end-of-life doula and an educator at the International End-Of-Life Doula Association, was Lyster-Mensh’s instructor — and is now her mentor. Walker taught her students that talking openly about death lessens the discomfort and unease around it, and that clears the way for people to think about their hopes for when it is their time.

“We can’t make informed decisions about anything unless we talk about it,” said Walker, who started a company called Doula by Destiny in 2016.

Last May, Lyster-Mensh began volunteering as a death doula in the hospice unit at Sibley Memorial Hospital. Since then, she has sat at the bedsides of about 100 dying people. While many reminisce about the past, others focus on the present moment.

Some people don’t want to talk at all, she said, and in those cases, she just keeps them company — which might seem insignificant, but her presence serves an important purpose, she said.

“I’ve had some very profound experiences with people and their families in those rooms,” said Lyster-Mensh, who volunteers at the hospice unit one day a week.

As Congressional Cemetery’s new resident death doula, she hopes to share her learnings with others.

At the next Death Doula Day, scheduled for Jan. 14, Lyster-Mensh will invite people to write their own obituaries. It’s supposed to encourage participants to get to know themselves better, and decide if, perhaps, there is something they want to change about their lives while they still can, she said.

“People don’t usually do that; they don’t usually sit down and tell the story of who they are,” she said.

Lyster-Mensh first joined the cemetery community in May 2021, after she and her husband moved to a new home about ten blocks away. She began volunteering as a gardener, and now tends to a plot for a family that died in the early 1900s.

“I fell deeply in love with this place,” she said, adding that she also joined the cemetery book club, among other activities. “I started volunteering for everything they have.”

She noticed there was not a space dedicated to openly discuss death at the cemetery, so she volunteered to fill the void.

Jackie Spainhour, the cemetery’s president, said she was elated.

“We’ve never really gone past the surface level of death conversations,” Spainhour said. “We are still an active burial ground, and there is a need in this area for people to have their questions answered.”

Death Doula Days are in addition to the cemetery’s regularly scheduled “Death Cafes” — which Lyster-Mensh is also leading as informal discussions, rather than planned activities.

Spainhour said she is most looking forward to seeing more people “relax their shoulders, and ease into conversations about death without the fear that is really prevalent today.”

Lyster-Mensh said she is hopeful that her Death Doula Days will encourage people to live richer, more purposeful lives.

“I know it sounds like it’s about death,” Lyster-Mensh said. “But it’s really about life.”

Complete Article HERE!

I went from being a labor-and-delivery nurse to a death doula.

I help people who want to die on their own terms by refusing food and water.

People who voluntarily stop eating and drinking tend to be terminally ill people whose doctors can’t predict how long they have left to live.

By

  • Nancy Simmers is a death doula whose clients decide to end their lives by refusing food and drink.
  • A former labor-and-delivery nurse, Simmers says the process of death is similar to birth.
  • This is Simmers’ story, as told to Jane Ridley.

This as-told-to essay is based on a conversation with Nancy Simmers. It has been edited for length and clarity.

Most people are taken aback when they hear that I’m a death doula. They’re shocked when I say that I work exclusively with people who want to die on their own terms, by voluntarily stopping eating and drinking.

The method, known as VSED, might seem terrible at first. But it lets you take control of the circumstances of your death.

Most people support the idea of the power of the individual. They understand someone who says, “It’s my life, let me get on with it.” But they feel uncomfortable when someone says the same thing about their death.

I used to be a labor-and-delivery nurse. Over the years, I’ve come to see death and birth as physical, emotional, and spiritual thresholds. They are similar processes. They involve uncertainty, fear of the unknown, and transformation. Both require courage, surrender, release, compassion, and support from others.

Some people reach a point in their life and decide they’re done

The US law largely doesn’t prevent people from choosing to end their life by VSED, which doesn’t require permission from a physician.

Many people who opt for VSED have a terminal illness. But it’s almost impossible to get a firm prognosis for neurological diseases such as ALS and Parkinson’s. People can suffer for years as their bodies and mental capacities deteriorate. Some people reach a certain point and say, “I’m done.” A person in their 90s who has lost their vision, hearing, and bladder control may feel that their quality of life is nil.

A headshot of death doula Nancy Simmers
Nancy Simmers, a death doula, helps people who opt to stop eating and drinking, a method of death known as VSED.

If a doctor won’t certify that you have less than six months to live, you are not eligible for “death with dignity.” The laws — which apply in eight states and Washington, DC — allow people to take lethal drugs under medical supervision.

VSED is another version of death with dignity. Each VSED death I’ve attended has been different, but not undignified. Most of my clients die in their own homes surrounded by their loved ones. It’s a gift. It wasn’t VSED, but when my father was dying of cancer in 1991, my sons — 8 and 5 — were in and out of their grandpa’s room. It doesn’t do anybody any favors to be frightened of death.

VSED requires a lot of planning

A lot of people know nothing — or very little —about VSED. There are some scary myths. People think that it involves great suffering and that it goes on indefinitely. They assume it will affect your life-insurance policy.

VSED is not to be considered lightly. It needs lots of careful planning. It’s reversible up to a point, and there are medications to ease the transition. Family members usually know about the decision and agree that it’s the choice of the individual concerned. Life insurance is mostly straightforward because the doctor does not write “suicide” as the cause of death; they note the person’s underlying condition, such as cancer.

An altar full of photos that pays tribute to the person dying
Simmers set up an altar to celebrate the life of a woman who chose VSED.

People considering VSED in my home county of Whatcom, Washington, find me via word of mouth or online. I’ll arrange to meet with them and their family. My partner, Andrea Fenwick, and I give frank and honest answers. There’s no sugarcoating. We’re part of the nonprofit VSED Resources Northwest, though we advise people across the world.

We can understand why families question their loved one’s decisions. It depends on the case, but we might tell them: “This is your beloved person, and your beloved person is suffering. It’s their body and their choice.”

We’ll tell the family, “Although you will suffer because you’ll miss this person, it’s their choice to end their suffering — how can you be supportive of this choice?”

Once things are decided, we mark the start date with a little ceremony. We celebrate the person and their life and their choice. We thank them and shower them with love and gratitude.

Many families make a small altar. It’s the focal point of their room. They’ll decorate it with family photos and precious items that remind the loved one and their visitors about their interests and skills. It’s a reflection of a life well lived.

I like to light a candle, symbolizing the person as a spirit. After the death, it becomes part of a leave-taking ceremony and is blown out.

VSED is a serious commitment, but it doesn’t have to be a solemn affair. My last client lightened things up with a touch of humor. We’d ask how she was feeling during her first few days of VSED — she joked about wanting a cold Pepsi.

I tell my folks that dying has been around for millions of years. Your body knows what to do. Just trust your body. Our bodies know how to breathe. Our bodies know how to process food. Our bodies know how to birth. They know how to die.

It can be hard for families to watch as their loved one becomes confused because of dehydration

VSED takes an average of nine to 11 days. The person is usually up and about for the first few days. But the middle stage, which can last almost a week, is the marathon.

They’ll need medication — a mixture of morphine and anxiety drugs — to help them through the confusion and delirium caused by dehydration. It’s hard for the family to watch. A designated person will step in if the loved one calls for food or water.

The final stage lasts about three days. Dehydration makes people sleepy. It’s reassuring for everyone because you lose consciousness when your body goes into crisis mode.

The lack of fluids affects your kidneys and liver. The excess bilirubin makes the skin look yellow. The feet and the fingertips turn blue. Breathing becomes shallow or agonal.

Friends and relatives gather at the bedside to say goodbye. It reminds me of families coming together to welcome a newborn. We want the very best for the baby; we support them when their journey in life begins. People deserve the same support when the journey ends.

Complete Article HERE!

Death doulas offer ‘radical love’ at the end of life

By Rebecca Tucker

If you’re familiar with the word “doula,” you likely know it in the context of birth. A doula, to most, is an individual who works alongside expectant parents to provide support before and after the childbirth process. While midwives, doctors and nurses administer necessary health care, doulas bring compassion, empathy and emotional support to the difficult work of ushering in a new life.

But just as there are doulas whose work centres on the beginning of life, there are also doulas whose work focuses on the end.

Death doulas – also known as end-of-life doulas – are practitioners who provide care for dying individuals and their friends and family members. Like birth doulas, the work of a death doula is wide-ranging, and can encompass everything from non-medical palliative care for a patient – like bedside counselling, sharing meals and assisting in planning any final gatherings or ceremonies the patient may want to participate in – to working with the friends and family members to complete necessary paperwork and help parse funeral needs and expenses of someone who has died or is dying. Through all of this, says Jennifer Mallmes, an end-of-life educator at Douglas College in Vancouver, and co-director of the End Of Life Association of Canada, a death doula’s aim is to make death as comfortable – spiritually, emotionally and, yes, administratively – as possible.

“Broadly, an end-of-life doula is a person who empowers and educates and encourages people to be more directly involved in their end-of-life decision-making,” says Mallmes. “This support is very specific to that person’s needs, beliefs and their preferences.”

In Canada, death doulas are an unregulated profession, meaning there is no standardized certification or regulatory body. Various colleges and organizations – like Douglas – and other accredited organizations offer coursework and certification to help prospective death doulas prepare for a career in end-of-life care. And the profession is increasing in popularity: The End of Life Doula Association has seen a 6-per-cent increase in membership since spring, 2020.

While more and more doulas join the ranks of those currently working in Canada, efforts are under way to make the profession as inclusive and intersectional as possible. Douglas, for instance, recently partnered with the B.C. First Nations Health Authority to offer formal end-of-life training to Indigenous community members, many of whom have been providing end-of-life care within their communities for years. And today, a new wave of individual death doulas in Canada is working to diversify – and modernize – the profession, aiming to address the needs of communities that they say have been underserved.

Toronto-based death doula Carmen Galvan co-founded the BIPOC Death & Grief Talk, a group that holds sessions to help those struggling with loss, in 2021, after realizing that the end-of-life needs of marginalized members of her community were not being met. “For many racialized folks, mortality is not far away,” Galvan says. “A lot of death-doula work is palliative, which makes sense. But the way we work, we recognize that you could die at any moment, which is true for everyone, but I believe is much more relevant to our communities.”

Galvan’s work is more advocacy-centric, she says, than that of traditional death doulas: She may help recent immigrants overcome language barriers when preparing their will, for instance, or explain the cost of returning the body of a deceased family member to their country of birth.

Through all of this, she works to help her clients understand that preparing for your own death isn’t morbid: “It’s just a radical form of love,” Galvan says, “because what we’re doing is preventing our families from having to deal with it while they’re grieving.”

In Winnipeg, death doula Rayne Foy-Vachon’s work centres on end-of-life care for members of the LGBTQ community. And like Galvan, she acts as an advocate for her patients, even when her work is palliative: “Say I’m at the bedside of someone dying, and the health care team is not aware or comfortable, or has even been around non-traditional families,” she says. “I can help make the person who’s dying a lot more comfortable by educating these health care providers.”

Foy-Vachon, who previously worked in traditional health care, notes that LGBTQ individuals may often have specific needs in death – such as the assurance that the correct pronouns will be used in funeral proceedings or ensuring that the legal paperwork is filled out properly to name chosen family members as next of kin, when biological family members are estranged or may not respect their funerary wishes.

“I’m working with a lot of older queer people right now who have seen it all,” Foy-Vachon says. “They still have family members who don’t want anything to do with them. And for them, knowing that there’s somebody that’s going to be able to be there for them after they’re gone is just a big relief.”

For both Galvan and Foy-Vachon, death-doula work manifests as advocacy but ultimately is rooted in destigmatization and compassion. At the end of the day – or the end of a life – the goal is to make death more practical, for all those involved. “We’re answering those questions of – what’s gonna happen when I die? What will happen to me, to my family, to my friends? We empower folks within that conversation,” Galvan says. “I think a big part of death work is giving people a bit of power.”

Complete Article HERE!

‘So many people are terrified of death.’

Death doulas provide end-of-life support.

Need emotional or spiritual support at the end of life? Hire a death doula.

By Jessica Hall

When Diane Button’s grandfather died at 85, he had a smile on his face and a sense of peace that made her want to learn his secret.

Being with him in the final hours of his death after watching his life caring for others as a doctor inspired Button to get a master’s degree in counseling and start volunteering with hospice programs. She then trained as a ‘death doula,’ wrote books about living well, and now teaches at the end-of-life doula professional certificate program at the Larner College of Medicine at the University of Vermont.

“It wasn’t so much to learn about dying as it was to learn about living well and ultimately dying well,” Button said.

Button is part of a growing number of so-called ‘death doulas’ who provide nonmedical care and support for people who are dying. Similar to the dynamic between a midwife and a birth doula, a physician or hospice caregiver would provide medical care at the end of life, while a death doula provides emotional and spiritual support and help to the patient and the family and friends.

There’s currently no licensing, no industry standards and no insurance reimbursement for death doula services. Doulas can be volunteers or get paid out of pocket.

Without licensing requirements, it’s difficult to track the number of people providing end-of-life support doula services. But since its inception in 2017, the National End-of-Life Doula Alliance has grown to 1,350 members in 49 states (all except South Dakota) and 13 countries.

Karen Reppen, an end-of-life doula and a member of the board of the National End-of-Life Doula Alliance, attributes the growth in awareness and numbers of doulas, in part, to COVID, when people often died alone, as well as the growth of the hospice movement and the sheer numbers of people closer to dying as baby boomers age.

“More people are willing to explore options beyond the hospital and what the medical system can provide,” Reppen said. “We no longer have multigenerational homes, communities may not be as tight knit as they once were, everyone is working – caregiving is a huge, huge challenge. Nonmedical support is needed to survive death with some grace.”

“There’s incredible need for support when you’re a caregiver and your loved one is dying. Whether it’s to simply walk the dog, go grocery shopping, get a few minutes to yourself, get help in navigating the medical information – there’s so many reasons to have some support,” Reppen said.

“Caregivers are very strained. The need for compassionate, skilled people to hold that space in our progressively isolating society is so valuable,” Reppen said. “So many people are traumatized and terrified of death. Even people with family and friends surrounding them may need help. Really, there is no other thing that we’re all guaranteed to share than the fact that we’re going to die.”

Robert Gramling, a palliative care physician and a core faculty partner for the University of Vermont doula program, agreed that the pandemic created an opportunity to talk about death in a way society hadn’t before.

“It can be terrifying to be sick. The COVID pandemic brought into sharp relief that death is part of life. The tragedy of social distancing has sharpened our focus on the space of being alone and isolated. It catapulted us into a public health crisis of loneliness and isolation. Our world is thirsty for this,” said Gramling.

The program at University of Vermont, which is online, is just one certificate program offered around the country. It attracts people from all stages of life, from diverse backgrounds – social workers, chaplains, hospice workers, family caregivers – all with the central desire to learn about death and dying.

“There will be a tipping point where it becomes more accepted. I think with the pandemic the world is valuing more this idea of ‘I want to be known. I want to be dignified and accepted,’” Gramling said. “We’re bubbling toward a tipping point that talking about death becomes part of life. Our world is becoming more open.”

“The doulas’ role is to fill the gaps any time people are feeling lonely or not heard. Anywhere along the course of a serious illness doulas can provide space with nonjudgment,” Gramling said.

Doulas can help younger, healthy people with advance directives, sit vigils for the dying or create legacy projects of stories to pass down to other generations.

Button said more doctors are referring patients to end-of-life doulas once medical needs can’t be met anymore.

“The time has come for doulas to emerge. The pandemic opened up the conversation about death and dying. So many people were impacted by it. The pandemic opened the door a crack and gave them a glimpse of mortality,” Button said.

“It’s an honor to be invited to the bedside of the dying,” Button said. “It’s emotional. It’s deep work of the heart.”

Complete Article HERE!

‘I’m a Death Doula and This Is the Top Way Most People Prefer to Be Comforted at End of Life’

By Jessica Estrada

Death doulas or end-of-life doulas, if you’re not familiar, are trained professionals who help people who are dying and their loved ones. These doulas provide emotional and practical support such as sitting vigil, helping plan funeral and memorial services, communicating with the medical support team, and assisting families with processing grief. Ensuring the person nearing the end of their life is comfortable is another big element of the job. While every death and situation is different, there are many practices and rituals that death doulas do—and teach and encourage the person’s loved ones to do—to bring comfort to the dying.

Below, Ashley Johnson, the founder of Loyal Hands, a team of millennial death doulas, shares five rituals, including the top way most people prefer to be comforted at the end of their life. Interestingly, many of these practices are universally comforting, even for those who are not actively dying, and can be incorporated now to help cultivate comfort in your everyday life.

Create a comforting ambiance

Setting the mood and creating a comfortable ambiance is important. Many people prefer to die at home, Johnson says, but wherever they may be, there are things you can do to make the environment as comfortable, familiar, and soothing as possible for them. To do this, she suggests asking the person what their ideal last day would consist of. Some ideas she recommends include playing their favorite music, having soft lighting, filling the room with soothing scents, and having their pets around.

Rub their feet or hands

Rubbing a person’s hands and feet can also provide comfort. “The last senses to go are usually touch, followed by hearing,” Johnson says. “Gently rubbing hands and feet will help the family and the dying process the labor of death. The comfort of massage helps relax tense moments. That sense of touch reminds the dying that they are loved and not alone.”

Sit vigil

Sitting vigil with someone nearing the end of their life also provides great comfort. Johnson says this involves sitting bedside with them, actively listening, and ensuring they are as comfortable as possible during their final hours. Sitting vigil also includes relaying any sign of pain to the hospice team.

Perform deathbed rituals

Deathbed rituals are a way to honor the dying person and their loved ones, Johnson says. Rituals can be done before, during, or after death and can be religious, cultural, or simply personal things the person finds comforting. For instance, Johnson recalls one client requesting that his family wash his body with warm water and lavender.

Shift their perspective on death

Death doulas also support the dying and their loved ones to adopt a death-positive mindset. They do this by having conversations about death, dying, and grief and encouraging them to view death as a normal part of life that everyone experiences. That can help reduce fears and anxiety around death.

Share and preserve memories

Another way death doulas help grieving families is by encouraging them to share memories and stories about their loved one. “This can help provide the family with a sense of purpose and also help significantly with coping and healing,” she says. You can get as creative as you’d like with this. Some ideas Johnson shares include capturing voice memos and videos, creating a family cookbook, planting trees in their honor, stitching a memory blanket together, donating to a charity they support, and keeping trinkets and mementos around that remind you of them.

Help get their affairs in order

According to Johnson, the top thing that makes people nearing the end of their life feel the most comforted is ensuring that their affairs are in order before they pass. Not only will this cause less stress to their loved ones, it also helps them achieve a sense of completion and peace before they pass.

“While legal documents are important, complete end-of-life care also includes helping the dying person spiritually, mentally, and emotionally in alignment as well,” Johnson says. “People ideally would like to transition with a sense of completion, a sense of satisfying their purpose here [in] this realm.” Examples of things that can provide that sense of fulfillment include extending forgiveness or requesting forgiveness from others, releasing things beyond their control, and addressing any fears or concerns around death.

Complete Article HERE!

An end-of-life doula’s advice on how to make the most of your time on earth

Life is short. Here’s how to cherish every day of it.

By

“I want a party in the woods with an all-night campfire. I’ll be off to the side in a sleeping bag, nice and cozy. There will be s’mores and cocktails. My friends can come and go, saying goodbye however they want, or just sitting quietly with me and holding my hand. Nobody should touch my feet, though. I hate having my feet touched. A playlist of my favorite songs should be on repeat. I’d like to die as the fire burns out at dawn. Lights out and lights out, you know?”

I’m on Zoom and a chaplain from Iowa is describing her ideal final hours of life. We’re training to become end-of-life doulas, and this morning’s assignment is to help each other talk through a final hours ritual. It’s one of many exercises designed to confront us with our own mortality, so we can leave our own feelings about death at the door before we step across someone else’s threshold to help with theirs.

End-of-life (EOL) doulas are at the opposite end of the life cycle spectrum from birth doulas. They provide non-clinical care (emotional, logistical, and physical) and help with planning; engage with life reviews and legacy work; and provide support for family and friends so caretakers can bring their best, rested selves to support their dying loved one.

I knew training to become a doula would change my relationship to death, but I didn’t anticipate how it would transform my day-to-day life. Like others, my smartphone use skyrocketed during the isolation of the pandemic. Even after those panic-inducing first months in NYC, I still found myself using my phone as a constant distraction — lurking on Instagram, clicking every New York Times alert, obsessively refreshing my email like it was a Vegas slot machine.

I didn’t become an end-of-life doula to fix my fragmented focus. I did it because Covid-19 made death suddenly feel very real and very present. But I found that a deep dive into death work profoundly clarified my priorities, and has helped me spend time in ways more aligned with those priorities thanks to the soul-shaking understanding that our time here is truly limited.

Here are three components of EOL doula training that have been useful in my never-ending quest to live a more present and focused life in this Age of Endless Distractions. Think of it as a looking-back-from-your-imagined-deathbed approach to living — which sounds morbid in theory but is empowering and enriching in reality.

Imagine you have three months to live

I’m not going to lie to you: This exercise isn’t going to feel great! Please do it only if you feel equipped to engage with feelings of grief and loss. I recommend having someone you trust read it to you, someone who also has the emotional bandwidth and who is not currently grieving. You’ll need a pen and paper. Choose a time when you’re not going to feel rushed and are in a comfortable space. Take some deep breaths. Settle in. Here we go.

Write down your five most-prized possessions, your five favorite activities, your top five values, and the five people you love the most.

Close your eyes. Imagine you’re at a doctor’s office. You’ve just been given a terminal diagnosis and told you have approximately three months to live. Sit with that news. Breathe. Open your eyes. Cross any four items off your list.

Close your eyes. You’re back home with your spouse or friends or children or pet. You have to find a way to tell those you love: “I’m dying.” Breathe. Open your eyes. Cross another four items off your list.

Close your eyes. You’ve started feeling the effects of your illness. You can’t get around as easily. Your sleep is restless. You’re nauseated from the medications you’re taking. Breathe. Open your eyes. Cross four more items off your list.

Close your eyes. You’re mostly confined to your bed now. Your loved ones have gathered because they know they will soon have to say goodbye. They drift in and out of your bedroom, or wherever you have chosen to spend your final days, holding your hand, perhaps playing music you like or reading aloud your favorite book. Breathe. Open your eyes. Cross four more items off your list.

Close your eyes. You’re in bed, eyes closed, unable to move much or to speak at all. You sense that you’re going to die soon, and you wonder what will happen when you go. What are you thinking about in these final moments? Breathe. Open your eyes. Cross the remaining four items off your list.

Whew. You did it. Make sure to give yourself as much time as you need to regroup before you reenter the “real world.” Sit still. Focus on your breath. Drink lots of water.

When I did a version of this exercise, I was amazed at how real loss and grief felt as I crossed items off my list. (There is nothing quite like imagining your kid’s life without you to bring on The Sobs.) I don’t want to overstate the impact of imagining loss versus actually experiencing it, nor minimize our individual, multi-faceted responses to real grief, but research has shown that stressful life events can change us, and that includes clarifying our values and priorities. Maybe you, like me, tapped into some of that clarity during this exercise.

A few days after I tried this exercise, I rewrote my Top 20 list on a notecard. I keep that notecard by my laptop and look at it often. It has been an unexpectedly powerful reminder of what and who I love, of who I am and want to be. Each day I think about how to fit in as much as I can from this list, even if I only have a few free minutes to myself. It has become the framework that informs my daily to-dos and balance of urgent/important tasks.

Practice deep, active listening

A good deal of EOL doula work is listening work. The deep, active listening doulas are trained for involves holding back our own stories, comments, and feelings. Doulas don’t tell a dying person what to do. They don’t try to fix the situation. They ask open-ended questions and understand that how people move through the dying process is up to them. This kind of listening requires empathy and restraint. It insists on being free from distractions, external (cellphone notifications, I’m looking at you) and internal (like that voice inside your head that wants to judge or give advice).

As the person at a party who makes approximately 30 seconds of obligatory small talk before diving into deeply personal conversations with strangers, I assumed I was custom-built for this part of being a doula. But it can be difficult to stick to open-ended questions, to sit comfortably in silence, or to resist giving well-meaning but unsolicited advice.

So, I’ve been practicing. A lot. This kind of listening has altered what I can only think to call the texture of my time. It has made me more present, empathetic, and curious in conversations and relationships.

The next time you’re having a conversation with someone who is sharing important information or struggling in some way, you might try it. Ask open-ended questions. “How are you feeling about X?” “Do you want to talk more about Y?” Give their answers space and silence to settle.

Reflect back what you think you’ve heard. Be open to being wrong about what you think you’ve heard. Be supportive, but don’t try to fix the situation with advice or talk them out of what they are feeling. Avoid platitudes like “give it time” or “it wasn’t meant to be.” Even “I know how you feel,” well-intentioned though it is, often misses the mark because we mostly don’t know exactly how someone else feels or entirely understand their specific situation.

Of course, not all our conversations require this therapist-like level of restraint, but challenge yourself to consider that plenty of them could benefit from a touch more deep listening.

Legacy projects in the here and now

Doulas often help with legacy projects: autobiographies, letters to loved ones, art projects, and more. These projects memorialize a person’s passions and creativity, values and contributions, and — spoiler alert! — you don’t have to wait until you or someone you love is dying to work on one.

Complete Article HERE!

Enriching the dying experience

— End-of-life doulas help those who want to personalize their journey

By Nancy Burns-Fusaro

As a master gardener, Noreen Kepple is familiar with the natural cycle of life — with birth and growth, with dying and death. Her next chapter is a natural progression.

“Human beings are part of that cycle,” Kepple said one day last week as she spoke about her work as an end-of-life doula. “I think that’s what led me to end-of-life care.”

Kepple, 70, an early childhood educator by training, spoke recently at Stonington Free Library about her new calling — accompanied by Greta McGugan and her sister-in-law, Lavina Kepple — at a presentation titled “What is an End-of-Life Doula?”

This presentation, designed to discuss a doula’s role in the dying process and share ways doulas enrich the dying experience for patients and their families in non-medical ways, was well-attended and attracted many “brand-new people” to the library, noted Karla Upland, library assistant director.

The Kepples and McGugan, all Stonington residents, completed the certificate program at the University of Vermont’s Larner College of Medicine in 2020, where they studied to become end-of-life doulas. The term, Noreen Kepple said, is becoming more and more popular as members of the baby-boom generation come of age.

Add the pandemic to the mix, she said, and the thousands of people who were forced to die alone in hospitals while separated from family members, and there’s no wonder people have been pondering their own end days and those of their loved ones.

“Most people in this country die in hospitals,” Noreen said. “I think many more of us hope to die at home. … The pandemic underscored the need for people to not die alone. People are thinking about their own deaths and of how they’d like it to be. Dying at home can be a more rewarding process.”

Dying at home, she continued, is also a process that can be guided with help from a trained doula.

The word “doula” — which comes from the Greek word meaning “woman who serves” — is often associated with birthing, babies and new mothers. In the last few years, as more and more people seek to take control of their own dying experiences, it has become also associated with the dying process.

“Birth and death are so similar,” said McGugan, 56, the mother of three adult children and the grandmother of 10 who was present at the births of her grandchildren. “They’re really the same thing.”

An “end-of-life doula,” Noreen Kepple told the 30 people gathered at the library, can also be known as a “care doula,” a “death midwife,” an “end-of-life coach,” a “transition guide,” a “soul midwife” and “many, many others.”

Whatever the name, she said during a phone interview last week, an end-of-life doula is a non-medical companion who offers emotional and sometimes spiritual support to the dying and their families.

“A doula can have many kinds of service,” Noreen Kepple said. “They can help plan a vigil, help with paperwork and legacy projects.”

If someone is a good cook, for instance, Kepple went on, a doula might help organize recipes.

“Some doulas help record oral histories,” she said. “It’s really whatever the client wants.

“It’s important to be present, to be an active listener and to be open-minded.”

“Open minds and open hearts,” said McGugan. “We meet people where they are.”

“Back in the day,” McGugan said, people would have learned about dying at home and probably would have been present at the passing of a grandmother or elder relative, and would have been “holding the hands” of the person passing.

“We weren’t as afraid of death then,” she added. “Today we live in more of a death-denying culture.”

“Our culture has a hard time with death,” said Lavina Kepple, 73, a former schoolteacher who is training to be a hospice volunteer. “Taking the course really helps you look at your attitudes about death and dying.”

One of the books the three women studied while taking the online program through the University of Vermont, Noreen Kepple said, and one she recommends to people interested in learning more about the work of a doula is “Cultivating the Doula Heart: Essentials of Compassionate Care.”

The book was written by Francesca Arnoldy, the program director and course developer at UVM’s doula certificate program.

Arnoldy, who is also a bereavement researcher with the Vermont Conversation Lab, a hospice volunteer and author of “Map of Memory Lane,” said the program has grown exponentially since its inception in 2017.

As more and more people want an “intentional” dying experience, Arnoldy said during a telephone conversation from her home in Vermont one day last week, and choose to “personalize their end of life,” it makes sense that more and more people are enrolling in the eight-week online class, which prepares participants to “meet the growing demand for end-of-life support as people live longer.”

“I just trained nine more people to be instructors,” Arnoldy said of the program, which includes topics like “Dimensions of Grief and Loss,” “Non-Judgmental Support, Acceptance, and Unconditional Positive Regard,” and “Entering Sacred Space.” “And we are already full for this year.”

It’s an intensive course, Arnoldy said, with lots of reading, writing, modules, discussion boards and plenty of support.

“We do lots of sharing,” Arnoldy continued, noting that coursework requires roughly eight to 10 hours of studying a week. “It’s deeply personal … and there’s lots of feedback … lots of support.”

The course is appropriate for all those interested in exploring end-of-life possibilities, she added.

“Everyone has a seat at our table,” Arnoldy said, “although people with fresh grief might want to take time to heal before enrolling.”

“As a doula, I trust in my clients’ inherent wisdom and strength,” Lavina Kepple told the group gathered at the library last month as she read aloud from Arnoldy’s book. “A doula knows that each person is entitled to the completeness that is his or her journey.”

“It’s important to get people aware that doulas are out there,” said Noreen Kepple, who suggested that, in addition to the program at the University of Vermont, people interested in doula work look into an organization called The National End-of-Life Doula Alliance, a nonprofit that “welcomes and supports all end-of-life doulas, trainers, and interested parties, regardless of background or level of experience.”

The three women are already planning their next talk, a training session for the staff at Seniors Helping Seniors in Mystic.

Upland, who organized the sound and livestreaming technology for the Stonington Free Library presentation, has also made it available on the library’s YouTube channel via the library website.

The doula presentation at the library was well-received, Upland said in an email. “The audience was very engaged and attendees expressed interest in either employing an end-of-life doula for a family member, or becoming trained as doulas themselves.

“Many of the questions revolved around locating and engaging local end-of-life doulas for palliative care work,” she said.

Complete Article HERE!