Death doulas help the dying meet their end with affirmation

Death doula Anna Adams sits in an office at Holistic Hospice in San Antonio on Oct. 28, 2020. Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.

By RENÉ A. GUZMAN

Andrea Aycock can only sometimes look at the photos of her hands clasped with her mother’s just before she died in May. But she’ll always cherish the helping hand she got from Anna Adams, an end-of-life doula in San Antonio who preserved that personal moment and so many more for Aycock in her mother’s dying days.

“Anna came and took care of her,” said Aycock, a call center operator in San Antonio. “(She) just mainly comforted me.”

Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.

Also known as death doulas, these trained professionals provide the terminally ill and their families physical and emotional support before, during and after death, the San Antonio Express-News reported. These are nonmedical services that often include relaxation exercises, funeral planning, educating the family on their loved one’s condition and just simple companionship.

Adams sees death awareness becoming more commonplace in the United States in the way that Día de los Muertos (Day of the Dead) celebrations have grown more mainstream and that there are more calls for services of end-of-life doulas.

“Cultures like the Mexican culture that have these beautiful traditions of staying in connection with that (dying) process are so admirable and so beautiful. Doulas want to make sure that is available to all people,” said Shelby Kirillin, an end-of-life doula in Richmond, Va., and program development manager for the International End of Life Doula Association (INELDA) in Jersey City, N.J.

Kirillin sees the rising awareness of death doulas as part of what she calls a “death positive movement,” where more people are getting back to supporting their dying loved ones at home and engaging with their death more up close and personal, much as their ancestors did.

“In the last 100-plus years in our Western culture, that has been taken away from us,” Kirillin said. “How to be with someone who was dying, how to touch them. That was something that we knew how to do.”

INELDA is one of just a handful of death doula organizations in the nation and was launched just five years ago. Co-founder Henry Fersko-Weiss created the first end-of-life doula program in the United States at a New York City hospice in 2003.

Kirillin estimates INELDA has around 40 certified death doulas across the country, yet has trained around 3,000 individuals in death doula care. Many just sign up to learn more about facing death and don’t pursue death doula work, she said, while others branch off to do their own training.

Most death doula services come in three phases.

The first is planning and preparation, which involves getting a terminal patient’s affairs in order and asking some tough questions that call for honest answers. Where does that person want to die? Who do they want present for those final moments? What so they absolutely need to say or do before they’re gone?

Kirillin said that first phase often addresses the dying individual’s regrets and unfinished business, as well as any advance directives, wills, etc. Often referred to as “legacy work,” such planning makes it easier for family to understand and respect the dying person’s wishes.

Fran Morgan is in that early stage with her dying mother Rosalee, who receives hospice care at the private residence of a family friend.

“With Anna in the picture, she will be advocating for all of the things that need to happen,” said Morgan, a retired telecommunications company manager in San Antonio. “It will release me from those responsibilities, and I can just be with my mom and cherish those final moments.”

That second phase is called the vigil, usually the last four or five days of the dying person’s life where end-of-life doulas and family members spend more time at their bedside.

“I call them my angel vigils,” Adams said.

During her doula vigils, Adams, 38, often creates a soothing space for the dying with soft music and dim lighting. Sometimes she’ll add a favorite scent with aromatherapy. Most times, she just gently massages her client’s arms and holds their hands.

And in those final moments as they take their last breaths, Adams comforts them with what they most want to hear, be it Bible verses, soothing music or just someone to say it’s going to be OK.

The final phase of a death doula’s work addresses survivors’ grief. Kirillin said that involves circling back with the family a few weeks after their loved one’s death to check on their emotional well-being.

Kirillin stressed that end-of-life doulas do console families, but are not licensed grief counselors and will refer families to such resources if necessary.

When it came to caring for Aycock’s mother, Adams mostly helped with her bedside care and keeping her visiting nurses on task. Adams also explained to Aycock any of her mother’s diagnoses she didn’t understand.

Then there was that time Adams took those hand photos of Aycock and her mother. Difficult as it is for Aycock to look at those photos, much less share them, she still holds them close.

She holds Adams’s work even closer.

“It is the best help that you can get,” Aycock said. “They provide comfort not only for your loved one that is going through the transition, but for you.”

Morgan expects to experience more of that care from Adams. “I’m looking forward to the relationship that we’re going to have,” said Morgan, who started working with Adams around three weeks ago. “For now my initial experience (and) impression is she certainly has the heart for what she’s doing.”

Adams’s first experience comforting the dying came when she was 16. Fresh from certification as a nursing aid, Adams tended to a best friend’s cousin for several months at her home with bathing and conversation. That care continued when that cousin transferred to hospice care and well up to her death.

“So we just had a bonding moment. I gave her that sacred zone,” Adams said. “That kind of piqued my interest.”

Adams went on to pursue a career in hospice, then for the last four years worked as an EMS manager and dispatcher for a private company. But something pushed her back into working with the dying.

“I told my family, ‘God wants me to do this. God is keeping me in line with this,’ ” Adams said.

At the start of this year, Adams got her end-of-life doula certification. Then over the summer, she partnered with fellow certified doula Sonja Koenig to launch TX Doula Movement, an online training and certification course for death doulas, senior care doulas and doula consultants.

Adams knows of just a handful of death doulas in San Antonio right now, but she expects that number to double later this year when around five of her TX Doula Movement students complete their certification. Adams plans to launch her own doula training service next year.

Adams said the coronavirus has not deterred her from her work, save for having to incorporate more video consultations with families and masks and frequent hand-washings during visits. She has yet to provide end-of-life doula services to someone with COVID-19, but one of the hospice companies she works with takes in COVID-19 patients.

“I don’t have a problem working with COVID patients,” Adams said.

Adams said most hospitals still don’t work with death doulas, but hospice services are slowly warming up to them as adjuncts to their own care.

“It is relatively new, but we’re seeing it more,” said Rachel Hammon, executive director of the Texas Association for Home Care & Hospice in Austin.

Holistic Hospice Care is one of two hospice centers in San Antonio that works with Adams. Administrator Erica Sandoval said Adams has been a welcome bridge between families and clinical teams.

“She can get on (everyone’s) level,” Sandoval said. “And she’s very calm and very patient. And she just wins their trust and they feel very comfortable with her.”

Like Adams, Sandoval, too, sees parallels between death doulas and Día de los Muertos, such as the memory books the doulas make for their clients and the Day of the Dead tribute altars families make for their lost loved ones.

“I definitely think that there’s a good association to that because they are (both about) wanting you to cherish their memories and enjoy the last moments and everything that you can remember of the individual,” Sandoval said.

Complete Article HERE!

End-of-life coach

— The art of dying well

For most of us, the word “doula” is firmly associated with a coach helping a mother through childbirth. A modern-day version of a traditional midwife, a doula, is not a healthcare professional, but rather a guide, whose goal is to comfort and support women in labour both physically and emotionally.

Derived from the Greek word δούλα (“servant-woman”), doula stands for a woman who lends her knowledge, experience and presence of mind during the arduous process of childbirth. In the Western world, the popularity of birth doulas started to gain traction in the early days of the reproductive justice movement back in the ’70s.

Striving for more natural and less medical experiences women turned to doulas, who’d often act as advocates for women and babies in hospitals which weren’t always friendly and accommodating.

Recent years have seen the rise to a different kind of doulas, quite the opposite of those attending to childbirth. These are “death doulas” who support people in their end-of-life journeys. Also referred to as “death midwives”, their vocation is a relatively recent phenomenon emerging as part of the mindset recognising death as a natural, accepted, and honoured part of life.

Death doulas are by no means there to assist in ending one’s life (at least in the countries where euthanasia is illegal), but rather to ease the transition both for the passing person and his or her loved ones, who stay behind/Sharon McCutcheon via Unsplash

There are remarkable parallels between being born and dying, and in both life scenarios, doula’s aim to reduce anxiety and confusion, manage the pain, and, if possible, make the experience more peaceful. Just as birth doulas are coaching mothers on birthing a baby, death doulas are coaching people on dying. They provide non-medical aid which is a mix of emotional and practical counselling that can make all the difference.

Christy Moe-Marek, an end-of-life doula from Minnesota, says that doulas emerged from the Baby Boomers, behind the natural birthing movement. They decided to take things into their own hands as far as dying goes: “They’re saying, no, I don’t want the death my parents had. We are rich in possibility, why can’t I make this whatever I want it to be?”

Death doulas – just like midwives – have been around since the beginning of humanity. Traditionally their roles were played by the wise women from the community or extended family.

However, with the disintegration of traditional societies and the extended family per se, we have lost touch with our roots as we often find ourselves helpless in the face of the imminent. Death customs and practices within families have all but vanished as palliative care was delegated to hospitals and the funeral industry was commercialised. But these days people are yearning for a better life – and death! – and this is when doula’s role becomes so crucial.

According to The New England Journal of Medicine, the number of Americans wishing to die at home rather than in a hospital environment is the highest it’s been since the early 1900s/Dominik Lange via Unsplash

They want to pass away surrounded by their family and friends, who could be overwhelmed by witnessing the final days of their loved ones while feeling helpless and powerless. The trade of a modern death doula has emerged as a response to the people’s fear of facing death and even contemplating it. Death doulas have started a conversation about dying and have, in some way, given voice to those making the transition. After all, these days many more people get a chance to linger on a bit longer despite terminal illnesses thanks to the advances in modern healthcare. In many cases, they do need someone to discuss their transition with and make it more meaningful.

Unlike death midwives of the past, our contemporaries are women (and sometimes men) old and young, coming from different paths of life. They help people on the threshold of passing to write letters to their unborn grandchildren, to arrange farewells with relatives; they may perform traditional or religious rituals for their charges or offer assurances.

Doulas bridge the gap between the dying and their families, facilitating conversations about death, explaining things and advising when it’s finally time to let go. Some say that working with a death doula opens people up to a more spiritual side of death with less anxiety and trepidation/Manikandan Annamalai via Unsplash

As death doulas are gaining more mainstream attention, there’s been an ongoing debate, whether they should provide free services rooted in the community. For instance, in communities of indigenous people or African people death doulas have continued to be a steadfast part of the culture. On the other hand, most of today’s end-of-life professionals aren’t being supported by specific communities and, thus, cannot afford to render their services for free. In big cities, where tightly-knit communities ceased to exist a long time ago, death doulas are usually hired by the family of the person nearing the end of life. Still, their responsibility remains with the dying, whether they are being attended to at home, or in a hospice.

In traditional cultures, the art of attending to the dying is passed down from generation to generation. But a skillset of a death doula isn’t “god-given”.

It is something that can be learned. These days one can learn the ways of a death doula by attending training courses or seminars. Neither in the US or Europe are there national regulatory agencies that would provide licensing and oversight. Most likely, their creation is just a matter of time. The decision to become a death doula is often made after attending a dying family member. Others translate years of experience as nurses and palliative care specialists into a new dimension, and some feel the need to make traditional passing-related rituals available to members of their communities. Groups that train death doulas are usually led by nurses and social workers who want to change the impersonal nature of the dying experience most people faces. In the US organisations like The Doula Program to Accompany and Comfort, in New York, The International End of Life Doula Association (INELDA), or Lifespan Doulas and other groups train people to become death doulas.

In Russia, death doulas are virtually non-existent, because palliative care is still in its infancy, and people are culturally opposed to an open conversation about death and dying/Bret Cavanaugh via Unsplash.

However, the need to make dying less clinical and remove the fear and stigma surrounding death has become tangible. Society seems to have gradually realised that dying people, in whose shoes we’ll all end up one day, deserve greater compassion and companionship in their final days. Shelby Kirillin, an end-of-life doula, based in Richmond, Virginia, reasonably wonders “Can you imagine if a woman was going through labour and no one around her was talking about it or preparing for it? There’d be an uproar if we treated birth like we treat death”.

When it comes to dying, traditions and modernity don’t necessarily have to clash. Indigenous cultures have long regarded death as an essential part of life, and even though thanks to modern healthcare options the process of dying these days can be virtually painless, a “good death” is more than just a painless one. That being said, the emergence of death doulas is, perhaps, the best thing that’s happened to humanity in a long time.

Complete Article HERE!

Deathwives, Death Cafes And Death Doulas.

Learning To Live By Talking About Death.

By Robin Seaton Jefferson

“To die will be an awfully big adventure.” Even Peter Pan, the mischievous little boy who refuses to grow up but rather spends his never-ending childhood adventuring on the island of Neverland, attempted to see death in a positive light.

But things were different in 1902 when Peter Pan first appeared in the book “The Little White Bird.” We saw death differently then and treated it more as a part of life. Is it because we believe we’re more likely to avoid it for longer in the 21st century that we seem to shy away from talking about it? Or is it because we have removed ourselves so far from the reality of physically dealing with the dead.

Whatever the reason, a reluctance to face or even talk about dying is largely an American phenomenon. And though there are many and varied ways for families and friends to honor their dead, we don’t seem to want to talk about it until it’s too late. And then we pay others to handle most of it.

But people like Lauren Carroll are trying to change all of that. Carroll and her partner, Erin Merelli, formed Deathwives in hopes of forging a cultural shift which encourages people to think and talk more freely about death. They describe Deathwives as “a collective of professionals who care about the practice of good death.” And they want to educate others about their end of life options which they say should include in-home funerals and death doulas.

“You have the right to a good death,” Carroll said. “We seek to widen the narrative around death and dying and support our community as we remember how to care for one another till the very end.”

A former funeral director and current hospice volunteer, Carroll serves on the board of directors for the National Home Funeral Alliance (NHFA). She said she wants to create connections between funeral homes, home funeral educators, death doulas and families. Merelli is a death doula, ceremonialist, funeral officiant and grief counselor. She is often called to sit with people as they die and to “create ritual and sacred space around the dying process.”

Most people don’t know that home funerals are an option available to them, Carroll said. “There have never been laws against this. You have the freedom to die at home and to take care of your loved ones at home. The family legally owns the body even after death in a hospital. The only law is that you have 24 hours after death to refrigerate or cremate the remains.”

According to the NHFA, “keeping or bringing a loved one home after death is legal in every state for bathing, dressing, private viewing and ceremony as the family chooses. Every state recognizes the next-of-kin’s custody and control of the body that allows the opportunity to hold a home vigil. Religious observations, family gatherings, memorials and private events are not under the jurisdiction of the state or professionals in the funeral industry, who have no medico-legal authority unless it is transferred to them when they are paid for service.” The National Home Funeral Alliance offers a list of legal requirements on the books in each state—either statutes that are applicable to all or regulations that fall under the state mortuary board’s set of procedures applicable for licensed funeral directors only.

“Keep this in mind: there are no funeral police,” the alliance states. “And there are exceptions to every rule, many of which happen when someone dies in the middle of an ice storm or a weekend or a holiday or a multitude of other unpredictable circumstances. Even under perfect conditions or professional care, many of these requirements are not logistically or practically enforceable.”

When America was a new nation, families cared for their dead in their own homes. The preparation, dressing and readying for a funeral was done there, and the caskets were typically built by the family themselves. As parlors gained popularity, families held their funerals in them. Traditionally rooms filled with a family’s finest possessions, parlors were ideal locations for honoring the dead. The parlors of grander homes even had a “death door” for the removal of the deceased family member, as it was considered improper to remove a body through a door the living entered.

The Civil War brought about the practice of embalming, as so many men were dying far from home, and the practice allowed the time needed to bring the bodies home to their families. With embalming came the appearance of funeral homes, funeral directors, morticians and undertakers all over the United States. The National Funeral Directors Association (NFDA) as well as the first school of mortuary science—the Cincinnati School of Embalming, now known as the Cincinnati College of Mortuary Science—were both formed in 1882. It was really the beginning of the same funeral process we use today, though advances in the profession have improved the ways that morticians care for the body as well as the ways that families can remember their dead.

And new trends on how to honor the dead and even just how we talk about death are being presented all the time. Environmentally-friendly funerals are being offered by so-called “green” funeral homes. Advocates of these services say that it’s less expensive, uses less natural resources and eliminates the use of hazardous chemicals such as formaldehyde.

And apparently we’re using a lot. According to an article by Tech Insider, more than 800,000 gallons of formaldehyde are put into the ground along with dead bodies every year in the US. In addition, conventional burials in the US every year use 30 million board feet of hardwoods, 2,700 tons of copper and bronze, 104,272 tons of steel, and 1,636,000 tons of reinforced concrete, Tech insider reported. “The amount of casket wood alone is equivalent to about 4 million acres of forest and could build about 4.5 million homes.”

According to the NFDA, a green funeral may include no embalming or embalming with formaldehyde-free products; the use of sustainable biodegradable clothing, shroud or casket; the use of recycled paper products; serving organic food; locally-grown organic flowers; funeral guest carpooling; and natural or green burial.

“In a purist natural or green burial, the body is buried, without embalming, in a natural setting,” the NFDA states. Any shroud or casket that is used must be biodegradable, nontoxic and of sustainable material. Traditional standing headstones are not permitted. Instead, flat rocks, plants or trees may serve as grave markers. Some cemeteries use GPS to mark the locations of gravesites. A natural or green burial may also simply mean burial without embalming, in a biodegradable casket without a vault, when permitted by a cemetery.”

Jon Hallford, also a member of the Deathwives Collective, owns Return to Nature Burial and Cremation in Colorado Springs, Colorado. Hallford told 9NEWS.com in Denver, Colorado last month that he plans to begin offering aquamation as an alternative to cremation. “Aquamation uses an alkaline hydrolysis system that consists of a metal chamber that uses water and lye for the cremation process, which is a cleaner process than the traditional cremation,” 9NEWS reported. “Once he has the system in place, he’ll be the only funeral home in Colorado to offer the service.”

The environment isn’t the only reason we’re talking more about death. Death doulas are becoming more mainstream. Just as a doula or birth companion provides guidance and support to a pregnant woman before, during or after the first days of the life of her baby, the death or end of life doula accompanies the dying person and their loved ones through the final months, weeks and days of their life. The doula provides support, resources, education and friendship for this period of life, whether it lasts a year or a day.

Then there are now so-called “Death Cafes,” where people gather to share cake and coffee, tea or hot chocolate and talk about death. A “Death Café is a space where you talk about death to become more engaged with life. Such is the paradox of a Death Café,” writes Abby Buckley about a meeting at the Alchemy Café in Gawler, South Australia. “We came from all walks of life, aged 6 months to 64 years old, from all over South Australia but met as equals because we all have one thing in common. We know we are going to die. We don’t have many spaces in our lives or our culture that are conducive to talking about death and dying. But people are hungry to talk about their experiences, to listen to others and to reflect on death.”

Death Cafés typically offer visitors an opportunity to discuss death without judgment, without prescribed ideology, and without any sales pitches. They are not grief counseling or bereavement sessions. There are no agendas, objectives or themes, rather they are often philosophical—and at times, humorous—discussions about death.

Death Café is both the name of the organization that created the format of the death-discussion groups and the term for the meetings themselves. To date, some 9,045 Death Cafes have taken place in 65 countries—4669 of them in the United States—since September 2011.

Death Café calls Death Café a “social franchise,” meaning that people who sign up to the organization’s guide and principles can use the name Death Café, post events to the website deathcafe.com and talk to the press as an affiliate of Death Café.

The Death Café model was developed by the late Jon Underwood and his mother, Sue Barsky Reid, based on the ideas of Swiss sociologist and ethnologist, Bernard Crettaz.

It’s not surprising the concept of Death Cafes has taken off. There’s been a tendency in the last few years to bring death out from among the list of forbidden topics.

“We have become such an isolated nation,” Carroll said. “Death is normal, and for some reason we’ve made it seem like the most abnormal, scary thing. We don’t even talk about it. Like Jon Underwood said, ‘Just like talking about sex won’t make you pregnant, talking about death won’t make you dead.’”

Carroll said society has removed the family from taking an active part in the death process “other than picking out the casket and flowers. In the past we had to prepare and think about it. It helps the healing process to be more hands-on, and it has been proven across the board that it helps to be active in grief.”

With Deathwives, Carroll hopes to teach others to have a better “relationship” with death, to take away the fear. “I have a healthy relationship with death. Knowing I’ll die, and talking about it, has made my life fuller. That’s how everyone single person should live.”

Carroll compared the moment of death to the moment of being born. “We don’t know what happens after death, just as a baby comes into the world having no idea what’s about to happen. We’ve all done it before. We were all born. We opened our eyes to the unknown. I have a feeling what’s next is going to be pretty amazing. If you think about it, no person who has had a near-death experience has ever come back and said that it was awful.”

Complete Article HERE!

How Death Doula Alua Arthur Gets It Done

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In 2012, Alua Arthur quit her legal career to become a death doula. The problem was that she had no idea such a job existed. “All I knew was that there had to be a better way to give support during one of the most lonely and isolating experiences a person can go through,” she says. Now 42, she is a leader in the field of death work and has guided thousands of people and their loved ones through the end-of-life process. She has also trained hundreds of other death doulas through her company, Going With Grace, and is on the board of directors at the National End-of-Life Doula Alliance (NEDA)

This year, as COVID has forced so many Americans to cope with sudden loss and their own mortality, Arthur has been inundated with new clients and students as well as larger questions about how to handle constant grief. She lives in Los Angeles. Here’s how she gets it done.

On her morning routine:
I usually get up around 8:30 or 9:00 a.m. I’m a night owl, and it helps me in my work because people tend to die between 2:00 and 5:00 a.m. I’m not sure why; there are a lot of different theories about it. But I’m most awake and alert at that time. The witching hours. I love to burn my incense at 4:00 a.m. and greet the crows.

Most mornings I meditate right after I get up. After I meditate, I fill up my gallon jug of water and exercise. I need to sweat and move. I love anything where the instructor is like, “Faster! Go! Only ten more seconds!” Since we can’t do group fitness in person right now, I have to re-create it in my house. It doesn’t work quite the same, because I will stop and eat snacks in the middle of a video. But I’m trying. Exercise and meditation are the things that keep me sane and grounded. They’re the baseline.

On being drawn to end-of-life care:
Being around death has made me more honest. I see that what we don’t say chokes us as we die. People always think they have more time, and when they realize that they don’t, they have regrets about things they haven’t done. I try to do what I feel like doing right now. And if that means eating white-cheddar Cheetos for breakfast, I will. Which is what I did this morning. I won’t always be able to taste delicious things, so let me do it now.

On managing her clients:
I don’t take on more than one client at a time who is imminently dying, because I want to be on call for them. Whatever they need, I will do. When a client with just a couple of weeks or months left first comes to me, we’ll go through the long list of items to consider in death and dying, and then we’ll create a plan. That usually happens over the phone. Then I go to visit, put my hands on them, really see what their physical condition is, and see what kind of support they have.

I continue to visit every week or so until their condition starts deteriorating fast, and then I’m there more often. I might be there when they die, and if I’m not, I’ll come sit with their family or caregivers afterward until the funeral home comes. I may also help wrap up practical affairs — possessions, accounts, life insurance, documents. It’s exhausting for a family to have to think about that when they’re also grieving, and I’m equipped to help. I’ll sit on hold with insurance companies, make funeral arrangements, all that stuff.

Beyond those who are imminently dying, I often have several clients who need end-of-life planning consultations. I can take on a couple of those at a time. That could be someone who has just gone on hospice and it doesn’t look that bad yet, or someone who just received a diagnosis and wants to prepare.

On winding down after an intense day:
I’ll drink wine and hang out with a lover. I’ll go out dancing until 5:00 a.m. Sometimes I just want to shut the brain off after a long day, and the best way to do that is by spending time with friends and people who tickle me. But it’s also good to spend a lot of time alone, which is the default these days. I like silence.

On becoming a death doula:
I spent the bulk of my career in legal services in L.A., working with victims of domestic violence. Then there were some big budget cuts, and I wound up getting stuck doing paperwork in the courthouse basement. I was already depressed and burnt out, but it blossomed into an actual clinical depression. So I took a leave of absence and traveled to Cuba. While I was there, I met a German woman who had uterine cancer and was doing a bucket list trip. We talked a lot about her illness, and her death. She hadn’t been able to discuss a lot of those things before, because nobody in her life was making space for her to talk about her death. Instead, they’d say, “Oh, don’t worry. You’re going to get better.” I came back from that trip thinking I wanted to be a therapist who worked with people who were dying.

I applied to schools to become a therapist, but in the meantime, my brother-in-law got very sick. So I packed up and spent two months in New York with him. That experience gave me a lot of clarity on all the things we could be doing better in the end-of-life processes. It was so isolating and I couldn’t understand why. Everybody dies — so why does it feel so lonely? After that, I did a death doula program in Los Angeles, called Sacred Crossings, and then I founded my company, Going With Grace.

On leaving her law career (and a steady paycheck):
It wasn’t a hard decision to leave my job as an attorney. The challenging part had more to do with identity and what achievement means. I was born in Ghana, and we’re all raised to be doctors and lawyers and engineers. So I was going against societal expectation and parental expectation. It was also tough to be broke for a long time. My student loans were in forbearance. I spent a lot of nights lying on my mom’s couch wondering how I was going to make things work. If my friends were going out, they’d have to pay for me or else I couldn’t join them. To support myself while I was starting my business, I worked part-time jobs at a hospice and a funeral home.

Eventually, I started hosting small workshops about end-of-life planning. I charged $44 dollars for people to come together and learn how to fill out the necessary documents. Now I have my own doula training programs. I have about 100 students at the moment, all online.

On charging for her services:
I have to navigate the financial conversations with a lot of directness. Part of the challenge is that our society doesn’t see the financial value of having somebody be kind and supportive. Being able to hold so much compassionate space when somebody’s dying — that is a skill. It needs to be compensated highly.

On living with grief:
I’m constantly grieving with and for my clients and their family members, all the time. There’s no fixing it. I have to be present with my feelings and let them wash over me, in whatever expression they take. If I try to shut off that part of myself, it becomes much harder to function in everyday life. Grief doesn’t always look like crying. Sometimes it looks like anger, promiscuity, or eating everything under the sun. Like all things, it’s temporary.

On how COVID has changed her work:
We have to rely much more heavily on technology and remote communication. There’s also a lot more interest in the death doula training program. Death is on a lot of people’s minds, and I’ve seen a lot more people starting to do their end-of-life planning — mostly healthy people in their 40s with young kids. A lot of people have seen younger people die suddenly, and it’s changed their perspective.

On her own end-of-life plan:
I would love to be outside or by windows. I want to watch the sunset for the last time, and I want to have the people I love around, quietly talking, so that I know they’ve got each other after I leave. I want to have a soft blanket and a pair of socks because I hate it when my feet are cold. I want to smell nag champa incense and amber. And I want to hear the sound of running water, like a creek. I’d love to enjoy all those senses for the last time. And when I die, I want everybody to clap. Like, “Good job. You did it.”

I want my funeral to be outside, and I want all my jewelry to be laid out. As guests come in, they grab a piece and put it on. I want my body to be wrapped in an orange and pink raw silk shroud. They’ll play Stevie Wonder — “I’ll be loving you always” — and everyone will eat a lot of food and drink whiskey and mezcal and red wine. There will be colorful Gerber daisies everywhere, and they’ll take me away as the sun goes down. And when they put my body in the car, the bass will drop on the music, and there will be pyrotechnics of some sort. I hope my guests have a grand old time and dance and cry and hug each other. And then I want them to leave wearing my jewelry.

Complete Article HERE!

Indigenous death doula mentorship program aims to teach youth to help others through grief

‘I just want to be able to support my family and my community [when] people die’

Kayleigh Lagimodiere and her mother Dana Connolly. Lagimodiere is one of 12 Indigenous youth who have been accepted into the Indigenous death doula mentorship program.

By Lenard Monkman

A new death doula mentorship program is being offered to Indigenous youth to equip them with skills to help others deal with grief and loss in their communities.

“It’s important for me to learn about this work because prior to colonization, I think we shared a different relationship with death. One that wasn’t so scary and fear-driven,” said Kayleigh Lagimodiere.

Lagimodiere, who is Cree, is 17 and one of 12 young people chosen to take part in the Indigenous Death Doula Program being offered by Blackbird Medicines in partnership with Canadian Roots Exchange.

A death doula is someone who supports people who are experiencing grief and or going through the process of death.

In January, Lagimodiere’s aunt Tracey Stevenson died and she got some experience doing death doula work.

“An elder from Swan Lake [First Nation] came and taught me how to prepare the body,” said Lagimodiere.

“That was like the first time that I had actually seen a dead body. Prior to that, at funerals, I wouldn’t go up.”

Lagimodiere said there have been a few recent losses in the family and they were having a hard time navigating through the grief.

“I just want to be able to support my family and my community [when] people die,” said Lagimodiere.

“I want to be able to help restore our practices that were there and to help people.”

The experience inspired her to apply for the Indigenous Death Doula Program, which was accepting applications from youth aged 12-29.

Lagimodiere said there were a number of different interest options that were available to applicants. She chose palliative care, harm reduction, cultural death practices, legacy planning and culturally grounded death and dying resources.

Indigenous grief

The program was started by Blackbird Medicines and its Indigenous death doula collective, which includes Connor Sarazin, Tasheena Sarazin, Colleen Cardinal and Elaine Kicknosway.

Founder Chrystal Toop, Omàmiwininì (Algonquin) from Pikwakanagan First Nation, started doing death doula work in 2018.

Chrystal Toop is the founder of Blackbird Medicines. The organization is offering an online death doula mentorship program for Indigenous youth ages 12-29.

“I come from the background of a full spectrum or a life spectrum doula worker,” said Toop.

“So I started out working with babies, pregnancy, things like that. But there’s just a huge demand on the other end, on that death spectrum.”

According to the website, Blackbird Medicines offer a range of services including virtual consultations, slideshows and videos for funerals, virtual funerals and aftercare to support people who have lost loved ones.

“For a lot of us, we came to this work because we were doing social services, front line work,” said Toop.

“Some of us have stories around missing and murdered men, women, girls, two spirit. And we have these personal experiences, so we recognize that Indigenous death doula work includes harm reduction from death.”

For the doula program, they are hoping to get more young people involved.

“The program itself is a gentle introduction to people, to support them,” said Toop.

It features two individual one on one sessions, as well as two group sessions with the whole collective, all of which will be done online.

Kicknosway said doing death doula work comes naturally to her. She has helped friends and family who have lost loved ones to cancer, but has also helped families go through things like suicide or other tragedies.

“What does Indigenous grief look like?” said Kicknosway.

“We need to make it a natural place to talk safely and to have spaces for this work.”

Complete Article HERE!

Hospice Workers Share What They Wish Everyone Knew About Death

By Emily Laurence

When Daniel Lynn tells people he’s a hospice volunteer, he says they usually respond by asking him a question: Why? American culture tends to be put off by anything related to death; it certainly isn’t a welcome topic at a party or around the dinner table. “People ask me why I would want to spend my time doing something so sad, but I find it incredibly rewarding and meaningful,” Lynn says.

Palliative care physician Christopher Kerr, MD, PhD, has gotten similar responses when he tells people about his occupation. Dr. Kerr started working in hospice care—a type of health care focusing on managing a terminally ill patient’s pain and symptoms, as well as their emotional and spiritual needs at the end of life—to supplement his income as a doctor. Up until that time, Dr. Kerr’s job only focused on one outcome—saving patient’s lives—so he admits that he wasn’t quite sure where he would fit into a health-care space where death was imminent. “When I first started, to be honest, I didn’t think there would be much for me to do,” he says. “As a doctor, you’re taught that death is the one thing to avoid.”

The years Dr. Kerr has worked in hospice care, treating thousands of people who are dying, have made him see the dying process in a whole new way. “Death is not a sad experience for everyone,” Dr. Kerr says. His book Death Is But a Dream shares stories of patients he has cared for in hospice, showing that dying is much more than suffering. It can be a time when many become emotionally awakened, and there can be levels of comfort and peace that can’t be explained by science.

This year, of course, death has been on our collective minds more than ever due to the pandemic. It’s devastating to lose a loved one—to COVID-19 or otherwise. But hospice workers offer special insight into what’s often overlooked when we talked about dying. And with their observations comes something we all collectively need right now: healing.

How relationships can change when death is imminent

Lynn became a hospice volunteer in 1985, after both his wife and father died of lung cancer. “My current wife and I are both hospice volunteers in Williamsburg, Virginia,” he says. “And we have two Bernese mountain dogs who work as therapy dogs with us in the hospitals and nursing homes.”

Lynn doesn’t deny that losing a loved one is extremely heartbreaking. “When my first wife was dying of lung cancer, I grieved deeply,” he says. Experiencing the need for comfort during this difficult time in his life was part of what inspired him to be there for others.

Just as people live in different ways, people die in different ways. But something Lynn has noticed in his work is that dying patients often prioritize relationships in a way they didn’t earlier in their lives. “Something I often see is that many people want to make amends and improve relationships that have been damaged,” he says. Family members who haven’t talked in years may start communicating regularly. Grudges are dismissed, replaced by forgiveness and peace.

Angela Shook works as a death doula, a trained professional who supports someone at the end of their life. She’s also seen how important relationships become at the end of life. “Many of the people I’ve worked with have a fear that they’ll be forgotten, so something we often do is a legacy project, which is a way of helping friends and family remember them [after they die],” she says. “One woman I worked with was known in her family as this amazing cook. Everyone loved her food. So for her legacy project, we made a cookbook of her recipes that all her children could have. And we used her old clothes to make an apron for her daughter. It was extremely meaningful to her, and also to them.” In these ways, a death doula can help make saying goodbye easier for both the dying and the living.

Experiencing comfort unexplained by science

While many people equate death with suffering, Dr. Kerr says something that has surprised him the most about working in hospice is the peaceful visions that often come in a person’s final hours. He says 88 percent of his hospice patients report seeing visions as they die. Often these visions—vividly real to the person experiencing them—are of people who have died before them, and they provide a great sense of comfort, peace, and even joy.

Dr. Kerr adds that dying children often see pets who have passed away. “Children don’t have the same language that we do to talk about death, but the visions they describe give them a sense that they are loved and that what is happening to them is okay,” Dr. Kerr says.

He cannot offer a scientific explanation for these phenomena. “There’s this assumption that people have these visions because their brains are changing, becoming deoxygenated, or they are medicated and confused, but that’s not the case,” he says. “We know that by looking at the brain; it’s not changing biologically or functionally. I think people are changing very much spiritually.”

“To me, visions like these show that we really don’t die alone. And there can be comfort and even joy in dying.” —Angela Shook, death doula

Shook says many of her clients have also had visions. She and Dr. Kerr say it’s something that happens regardless of religious or spiritual beliefs; even those who don’t believe in a higher power or an afterlife can experience visions. “I would estimate visions are part of about 90 percent of the deaths I’ve been apart of,” Shook says. “One 83-year-old woman I worked with had been feeling very agitated for the three days. But when I walked into her room one day, she had a peaceful smile on her face. I looked over at her and she was rocking her arms, as if she was holding a baby.” The patient died shortly after that, and Shook shared what she saw with the patient’s son. “He told me that his mom’s first daughter had been a stillborn and she had often said that she couldn’t wait to see her daughter in heaven one day,” Shook says. “To me, visions like these show that we really don’t die alone. And there can be comfort and even joy in dying.”

Not everyone, though, has happy visions. In his book, Dr. Kerr says his research has found that in 18 percent of his patients who have visions, they are more like nightmares. “There seems to be a correlation between people who have had very traumatic experiences in life or a lot of regret [and experiencing negative visions],” he says.

Of course, it would be unfair to paint everyone’s end of life experience as peaceful and uplifting. The truth is, death is sometimes accompanied by pain and suffering, both physical and emotional. “Often, people have a question of ‘why me?’” Lynn says, adding that some are angered by what’s happening to them. It seems death, like other stages of life, isn’t all good or bad. Still, few people talk about the moments of peace—and even joy—in the process, and that’s what Lynn, Shook, and Dr. Kerr hope to shed light on.

“Becoming a death doula and spending time with the dying has been the greatest, most beautiful gift of my life,” Shook says. “It’s strengthened my belief that there’s more beyond what we can see.”

What hospice care has looked like during COVID-19

Both Dr. Kerr and Shook say their jobs have changed tremendously during the pandemic, and have caused them to think even more about the importance of end-of-life care. “Our work in hospice and palliative care has become invaluable during the pandemic,” Dr. Kerr says. He adds that, for him, working during the pandemic has been a struggle as the way he works has changed tremendously. “Personally, I feel a bit lost,” he says. “My work is most meaningful when defined by direct interpersonal relationships with patients, families, and colleagues.” But as hospitals and care facilities tightly restrict visitors to reduce the spread of COVID-19, cultivating those relationships is extremely difficult.

Shook says she feels her work has become more vital than ever in helping loved ones find avenues of closure. “Many have lost loved ones and been unable to mourn at a service or traditional funeral because of social distancing restrictions,” she says. “It is so important to take the time to grieve and realize that grief looks different for everyone.” Since, for many, attending a funeral isn’t a possibility right now, it can make finding other ways to say goodbye—such as through a legacy project—especially meaningful right now.

“Those of us who work at the bedside of the dying can attest that patients, in the face of what may look to most like a lonely death, do experience love, meaning, and even grace.” —Christopher Kerr, MD, PhD

Shook says she has still been providing her services as a death doula virtually, as meeting in person with families is not currently possible. “Many facilities and hospices in which many doulas work have restrictions on visitors. During this time, doulas [like myself] have been offering virtual support through web conferencing, calls, letters, FaceTime, and more,” she says. “With so many being isolated, doulas are more important than ever and can still support the dying and their loved ones from a distance.”

Dr. Kerr says that many family members of his patients have expressed devastation and sadness at not being able to be physically present for their loved one’s final moments. He sympathizes with this sentiment, but offers up some words of comfort. “The dying process includes altering levels of alertness and progressively deeper sleep, and include vivid pre-death dreams,” he says. “[In their final days], the majority of patients see not tubes or monitors but the faces of predeceased loved ones. They revisit the memories of being held and cherished, the apotheosis of a life rather than its demise. They teach us that the best parts of having lived are never truly lost.”

This, he says, reveals something important about the dying process, whether it’s during a pandemic or not: “The totality of our human experience can never be defined by or reduced to its last moments,” he says. “Those of us who work at the bedside of the dying can attest that patients, in the face of what may look to most like a lonely death, do experience love, meaning, and even grace. The dying often experience a summation of their life’s best moments and they leave us feeling more connected than alone.”

Complete Article HERE!

How death doulas are helping people process grief during the pandemic

By Tracey Anne Duncan

Like so many people, I have spent much of this pandemic grappling with grief. I’ve lost people I love, and even now, people I care about are ill. Even if you haven’t personally lost someone, you’re likely tapped into the collective sense of mourning. It’s hard to know how to comfort people who are dying or the people who love them under any circumstances, but when you can’t be together, it makes it even harder.

That’s where death doulas step in. In case you aren’t familiar with the term, a death doula is like an end of life midwife. They help dying people by guiding them and their families through the dying process. They help people plan out their death experiences. They can aid in navigating the practical parts — like wills and funeral planning, and also the emotional aspects — like helping people figure out what kind of rituals will make grieving cathartic.

Many of the usual ways that dying people and those who love them deal with death — deathbed visits, meetings with spiritual advisors, grief counseling — are not available to us right now. We may not get to have much, if any, contact with a person dying of coronavirus. In this pandemic of mass uncertainty, death doulas can help us through the grieving process.

“Doulas are professionals who provide support and guidance to individuals and their families during transformative life changes,” Ashley Johnson, an Atlanta-based death doula and founder of Loyal Hands, a service that matches people with end-of-life doulas, tells me. These doulas can train family members in some of the practical aspects of caregiving, help people create support plans, and counsel those who are dying and the people who love them, Johnson tells me.

Death doulas are also educators, in a way. Most of us spend a lot of time trying not to think about death, and we aren’t well-versed with the death process. Most of us aren’t even aware that death is a process that can be charted. Death doulas help folks get familiar with the normal and natural stages of dying, Johnson tells me. In the terrifying and confounding moments when grieving people are wondering what happens next and how they can deal with it with dignity, death doulas can step in to fill in the blanks.

There’s kind of a new-age, woo-woo stigma surrounding the work that death doulas do. They aren’t priests and they aren’t psychiatrists, so their professional world is kind of murky spiritual-ish/life coach-ish territory. But some psychologists do think that death doulas can play an important role in helping people cope with grief. “A doula could help people figure out how they want to mourn,” says Aimee Daramus, a Chicago-based psychotherapist.

Daramus adds that people should be mindful that many doulas aren’t trained therapists, but because they are familiar with managing grief so they are generally able to tell when a clinical professional is necessary. For people who are spiritually inclined, but not formally religious, this middle ground can be a comfortable place to mourn without devolving into either over-medicalized melancholy or eccentric science-shunning spiritualism.

“A doula should be able to recognize when someone’s thinking or behavior is starting to go beyond the normal range of mourning experiences.” In this way, death doulas can be a touchstone for figuring out if a person is having a healthy grief response or if they may benefit from another type of help. There is no one right way to grieve, of course, but some people can sink into depression if they don’t process their grief as it’s playing out.

One of the benefits of working with a death doula is that you can shop around to hire someone who fits your needs and understands the cultural specifics of your background. “A professional should work to understand the unique cultural practices relevant to that individual or family,” says Thomas Lindquist, a Pittsburgh-based psychologist and professor at Chatham University. This is especially important, he says, during important life milestones.

A lot of folks in the hospice and funeral industries will likely have a passing knowledge of many kinds of death practices, but you can find a death doula who shares your beliefs, or who literally speaks your own language. Grieving, while it is a universal experience, isn’t generic, and Linquist says that it’s important for a family or person’s religious beliefs to be incorporated into their care plan.

But how can a doula help someone die with dignity if they can’t even be in the same room with them? “As doulas, we have had to get really creative about the ways we meet with people,” says Christy Moe Marek, a death doula in Minneapolis/St. Paul, and an instructor at International End of Life Doula Association (INELDA). Marek says that she has met with the families of dying people on their decks and porches, but that she has had to meet with most dying people via Zoom. It’s not ideal, she says, but adds, “it is opening up such possibilities given the constraints of the pandemic.”

Death doulas are finding new ways to support people. “So much of the way this works right now is in helping both the dying and their loved ones to manage expectations, reframing what they hope for, and to shift focus onto how the ways we are connected whether we are able to be together in person or not,” Marek says.

Marek says that helping people accept the reality of difficult experiences is really the whole point of her work. “During the pandemic, what is actually happening is different than we could possibly imagine and we may not like it. We may actually hate it with our whole being, but it won’t change what is. So we work with that,” Marek says, “And that is what ends up being the mark of a good death.”

Complete Article HERE!