The Books Keeping Me Grounded as I Contemplate Becoming a Care Partner to My Parents

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My mother was driving home from work one drizzly day at the end of 2019 when she was struck by an oncoming car that had veered into her lane. Her car was totaled but, luckily, she sustained minimal injuries. Still, she was mere months away from retirement and, now, she had to grapple with the effects of a concussion, shoulder pain, and severe anxiety.

It was eventually determined that she would need surgery for her shoulder. But then the pandemic hit and her treatment was delayed.

A year and a half later, she still has shoulder pain and tires easily. She goes to physical therapy three times a week. Sometimes, she has flare-ups and needs cortisone shots. She’s nervous about driving very far.

My father, meanwhile, has been wrestling with chronic depression and anxiety for years (we two are birds of a feather…). In recent years, his hands have developed tremors that have become increasingly worse. Testing has revealed inadequate answers.

Amidst other medical issues, it also emerged that my father was experiencing memory problems. The other month, he was diagnosed with mild cognitive impairment which, in 50% of cases, can grow into full-blown dementia.

I’ve had an interest in end-of-life care for a while now, mostly because of what I observed when my mom was caring for her own father. I’ve written previously about the books I’ve enjoyed that tackle end-of-life care, compassion fatigue, and caregiver burnout. More recently, the topic has become a side niche for me in my journalism work. In a piece that went live on Rewire.org last month, I write about the lack of systemic support for unpaid family caregivers.

All this time, I felt I was preparing for something. After all, I’m 40. My parents are 70.

But as the past two years have brought more challenges — both with their health and with the decisions I was forced to make for my 6-year-old as COVID spread across the world — I realized I wasn’t prepared at all.

So, I turned to books. Because of course I did. That’s what I do. And while I’m still scared of the inevitable shift to come in the next few years, I at least feel more grounded in what it all means, and what options we have.

If you, too, are entering the “sandwich generation,” allow me to share which books were helpful for me.

Being Mortal by Atul Gawande

I actually read this one several years ago, but I’ve found it to be a good one to return to. In it, Gawande contemplates what it means to experience a “good death,” and shows how medical advances have led us to push back against the bounds of mortality in such a way our quality of life in later years is adversely impacted. He then shows that there is another way and that, rather than postponing death, we can enjoy life — until the very end.

Advice for Future Corpses (and Those Who Love Them) by Sallie Tisdale

A fellow Book Rioter recommended this one to me back when I first started to get nervous about my parents’ health. After reading a library copy, I ordered my own copy, and now I’m doing a reread so I can dog-ear pages and take notes. Every time my husband sees the book on the counter, he shakes his head and calls me a morbid weirdo. But this book is a revelation. Written by a practicing Buddhist who also spent a decade working as a nurse in the field of palliative care, Tisdale provides a comforting perspective on whether or not a “good death” actually exists (good for whom?); what you should and should not do, say, and expect from your loved ones in their later years; what you can expect at the different stages of aging; the nature of grief; and more. I may be a morbid weirdo, but at least I’m a morbid weirdo who now feels a little less afraid.

Can’t We Talk About Something More Pleasant? by Roz Chast

I actually ready this one right before my dad received his MCI diagnosis, and I felt as if I were looking into my future. There is the anxious, aging father who eventually slips into dementia. There is the willful, stubborn-as-fuck, aging mother who refuses to ask for help when she needs it. And then there is the daughter — Roz Chast herself — who doesn’t know quite how to handle this sudden shift without completely upending her own life. Beyond the parallels to my own life, I appreciated how this graphic memoir showed a woman pushing back against what is expected of daughters, making decisions that took into account not only the care of her parents but also of herself. Foregoing one’s own care is a trap many unpaid family caregivers fall into.

What We Carry by Maya Shanbhag Lang

My mom and I have always been close…in a slightly codependent way. So I immediately connected to Lang as she described the ways in which she needed her mother — how much she counted on her to be there and support her during hard times — and how disoriented she became when, after becoming a mother herself, things changed. There are a lot of layers to this memoir, but what felt particularly relevant to me were the moments of reflection around her changing relationship to her mother as her mom became swallowed up by Alzheimer’s and the way this informed how she mothered her own daughter. On top of that, threaded throughout the book, was a fable of sorts about a woman who carries her child across a river and, as the waters rise, must decide whether to save herself or her child. By the end, though, Lang begins to see that the question of who to save is not as black and white as it first appeared.

Complete Article HERE!

What happens when someone is dying?

Dying is unpredictable. It is not always possible to know for sure that a person is in the last days of life, predict exactly when a person will die, or know exactly what changes the person you are caring for will experience when they are dying.

However, there are certain bodily changes that show a person is likely to be close to death. It is normal for these signs to come and go over a period of days, and if they do go, this does not usually mean that the person is recovering.

Some of these changes may be distressing, but it can be reassuring to know what to expect and how to help. Signs that a person may be dying can include:

By clicking on the links above you can find out more about these changes and whether there is anything you can do to help.

The links below give more information and practical advice relating to other concerns or questions that might arise:

More information about support available and what to do after a death is available at the links below:

Thanks to the National Council for Palliative Care, Sue Ryder and Hospice UK for their kind permission to reproduce content from their publication What to expect when someone important to you is dying, which can be downloaded or purchased from the Hospice UK website.

Complete Article HERE!

World’s first animal hospice in remote Scotland where good old dogs go to die

Alexis Fleming, author of new book No Life Too Small, lives with a brood of more than 100 dying animals. She opened the Maggie Fleming Animal Hospice in honour of her dog Maggie

Alexis gives animals peace and happiness in their final days

By Susan Griffin Millie Reeves

In a remote part of Scotland, Alexis Fleming and her motley crew of dogs, sheep, pigs, and birds, are enjoying the good life.

Aside from the expected chaos of a 100-plus animals on site, it’s a place of tranquillity, contentment and happiness, and that’s despite the fact that death looms large in these parts.

Fleming runs the world’s first animal hospice, a place where animals, many of whom have experienced brutality at the hands of previous owners, can live out their last days in peace and in Fleming’s words, ‘have a good death’.

“If we accept life then we have to accept death. It’s one inevitability, and it can actually be a really beautiful thing. It’s going to happen, and we’ve all got it inside of us to make someone’s death a lovely thing. It’s a gift to be able to do that, so that it can be faced with dignity and acceptance,” says Fleming, 40, who opened the Maggie Fleming Animal Hospice in honour of her beloved dog, Maggie.

Alexis with Maggie in 2010
Alexis with Maggie in 2010

In her new book, No Life Too Small, Fleming recalls how the pair first met after she came across an online ad by accident.

The photograph of a brindle bullmastiff ‘small and skinny’, and ‘hauntingly sad’ caught her attention but it was the accompanying wording that sealed their fate.

Bought for breeding, 10 out of 12 of the puppies had died, so ‘it’ was of no use and the girlfriend was beating ‘it’ up – ‘10 months old. £100’, the ad stated.

Fleming wasn’t in a position to care for a dog, but she couldn’t turn her back.

“I had to turn my whole life around but it’s just what I had to do. It was never a debate,” says Fleming, who provided Maggie with a safe and happy home, and likewise Maggie supported her new owner as she battled a chronic illness.

So, it broke Fleming’s heart when Maggie died of lung cancer on a vet’s operating table seven years later.

Digger was also in Alexis' care
Digger was also in Alexis’ care

Although Maggie was ill, it was unexpected and Fleming was beside herself that she wasn’t there at the end, but then the idea of opening a hospice occurred to her.

“It was a ridiculous idea really because I’d been very ill and going through such horrible grief at losing Maggie, but the thought was there, and was always going to niggle until I did something about it.”

The hospice opened in 2016 and Fleming has welcomed a host of old, terminally ill and abandoned characters through its doors over the past few years, including lots of canine pals such as George, Osha, Annie, Bran, B and Digger.

“I’ve never known a dog to wag a tail at me and be lying about it. Dogs are very emotional and pick up on your feelings, so, if you have happy dogs around you, you know you’re hitting the target. It’s a lovely thing because they are dependent on us, and knowing you’re making someone really happy makes me satisfied and happy,” says Fleming.

“It’s a very deep but simple relationship. I’ve got the same relationship with sheep. They very much get into your heart and your soul. I can’t imagine life without any of them.”

Baggins the Great Dane knew when it was time to go
Baggins the Great Dane knew when it was time to go

Baggins, a Great Dane, is one of the most recent residents to have passed away.

Before arriving at the hospice, he’d been left on his own in a garden without shelter, and almost starved to death.

“He was a kleptomaniac, spent his days winding folk up, knocking them over and thieving and thinking he’s the most hilarious guy in the world. He had an absolutely brilliant time here, but one day he looked at me and said I’m done, and I said ‘okay pal’. The vet came and he left really peacefully.

“I’m devastated, I miss him so much and always will but I’m so happy for him because it was a beautiful death, and it’s possible for that to happen,’ says Fleming, who has learnt to accept what she can and can’t control so it doesn’t become overwhelming.

“Some of the animals have been through traumatic situations, but there’s nothing I can do about their past, it’s all about what I can do for them now.”

It’s not just dogs who enjoy Alexis’ care

And although people often presume she wouldn’t want to get too close to her residents to prevent greater heartbreak, the opposite is true.

“You’ve got to know someone really well to know when they’re saying ‘I’m done’ and then face that,” explains Fleming, who makes a deal with every new arrival.

“I say to them, ‘There will come a point where you don’t want to be here anymore, you’re fed up and had enough. Tell me and I promise I’ll listen’, and then we don’t think about it again. That’s the way I find that helps me and them the most. We know that day will come, and I’ve made a promise and I can’t break it but until that point, we just enjoy it. It’s just about enjoying it while they’re here.”

Alexis' new book

Although friends and family stop by to help, Fleming runs the hospice primarily by herself, which often means 20-hour days, but despite the exhaustion, she wouldn’t have it any other way.

“A friend of mine said it doesn’t matter where you go here, there’s a happy face smiling at you and it’s true. It has been a real slog at times, and there have been times when I’ve wanted to chuck it all in and stamped my feet and thrown Hobnobs in the pond but it’s an amazing way to live being surrounded by happy folk. I mean, it’s not perfect, folk die and it’s traumatic and horrific at times but overall, we’re all really content and it’s just a great way to live.”

Complete Article HERE!

Canadian researchers build end-of-life predictor tool to support palliative care

The RESPECT calculator predicts frail people’s survival to assist caregivers in deciding about end-of-life care and services.

By Mallory Hackett

Understanding the trajectory of someone’s death to provide appropriate end-of-life care is a complicated process that the researchers from Project Big Life, a Canadian health calculation research group, hope to make easier with their Risk Evaluation for Support: Predictions for Elder-Life in the Community Tool (RESPECT).

The RESPECT calculator predicts frail people’s survival to assist caregivers in deciding what type of care and services they may need at the end of their life.

“Knowing how long a person has to live is essential in making informed decisions about what treatments they should get and where they should get them,” Dr. Peter Tanuseputro, physician-scientist at Ottawa Hospital, investigator at Bruyère Research Institute and a developer of RESPECT, said in a statement.

“As a person gets closer to death, the balance shifts from having curative care as the primary goal, to care that maximizes a person’s quality of remaining life.”

TOP-LINE DATA

In its validation study, the RESPECT calculator predicted a six-month death probability of 10.8% for the older adult cohort used in the study. The probability of death ranged from 1.54% in the lowest risk group to 98.1% in the highest risk group.

Survival time varied from 28 days in the highest risk group to over 8 years in the lowest risk group.

The top predictors of mortality were declines in a person’s ability to carry out activities of daily living, such as hygiene, using the toilet and mobility. The researchers found that these factors were more indicative of a person’s deterioration than chronic diseases they have.

METHODS

The researchers used population data over a six-year period derived from the Resident Assessment Instrument for Home Care (RAI-HC), a multidimensional clinical assessment used for care planning in the home setting in Canada. They collected data from more than 491,000 older adults between 2007 and 2013.

The majority (65%) of the cohort was female, and the average age was 79.7 years.

In addition to the data collected from the RAI-HC, which includes nearly 400 measurements, the calculator considered predictors such as physical functioning, cognitive impairment, sociodemographic factors, biological diseases, self-reported measures of health and recent symptoms.

THE LARGER TREND

Nearly every country in the world is experiencing a growing population of older adults, according to the United Nations. In 2019, there were 703 million people worldwide 65 years or older. That figure is anticipated to double to 1.5 billion in 2050, meaning that one in six people in the world will be aged 65 years or over.

The aging population places pressure on countries’ elder support systems, requiring new models to be created to care for this growing population segment, the U.N. says.

Digital health is poised to help end-of-life care with players like Papa, Spacetalk and Lively creating solutions for seniors. There’s also been a number of M&As in the space including Connect America’s acquisition of Royal Philips’ Aging and Caregiving (ACG) business and Amedisys’ purchase of Contessa Health.

ON THE RECORD

“The RESPECT calculator allows families and their loved ones to plan,” Dr. Amy Hsu, investigator at the Bruyère Research Institute, affiliate investigator at The Ottawa Hospital, and faculty in the Department of Family Medicine at the University of Ottawa, said in a statement. “For example, it can help an adult child plan when to take a leave of absence from work to be with a parent or decide when to take the last family vacation together.”

Complete Article HERE!

Planning Death Has Gone Digital

— Inside the Apps That Prepare You for Loss

Since the start of the pandemic, more people are downloading apps that help users process grief.

By

Lucy Clay, 26, was at work when her phone buzzed with a message from her mother. Her dad was seriously ill, and doctors had raised the possibility of discontinuing treatment. Lucy was thrown into a cycle of anticipatory grief – and she turned to technology to help her with the waves of anxiety that she was experiencing, and to prepare herself for the next stage of her father’s palliative care. 

“It’s been incredibly comforting to know that there is a resource that you can access anytime you need it, day or night,” she told Observer. “When things are really bad, I can’t bear the thought of having to explain what is happening. There’s no substitute for having a human sit with you in the horror, but sometimes the silence of technology is a welcome alternative to the well-intentioned friend.”

For Lucy, who is herself a funeral director, the idea of death is a part of everyday life. Yet her career could never prepare her for the reality of caring for a terminally ill parent. After all, losing a loved one is an overwhelming experience. Family members and friends are often expected to deal with the vast administrative burdens that come with death at a time when they desperately need to grieve. And although death eventually comes for all of us, a surprising number of people have no real plan in place for when the end of their life approaches. Data suggests that although 90% of Americans think that talking to their loved ones about end-of-life logistics is important, only 27% have actually done so.

Enter the end-of-life industry. Over the last few years a plethora of apps and services, like those used by Lucy, have sprung up that promise to ease the process of planning for death. Whether it’s noting what healthcare that you’d like to receive, recording memories so that a curated legacy is left behind, or uploading important documents, there are plenty of options on offer. Some target a specific aspect of the death planning process, such as Safe Beyond, which allows users to record messages for the people that they leave behind to access after they pass. Others, such as leading end-of-life planning app Cake, offer a more rounded approach, guiding individuals through everything from writing a will to planning an eco-friendly funeral.   

Lucy now uses a range of apps that provide solace in an incredibly difficult time and help her to understand how best to manage a parent’s end-of-life journey. For her, the timing of technology’s increasing popularity when it comes to grief and end-of-life care was crucial. She describes the experience of looking after an extremely sick parent as feeling forgotten about – services and contact with care teams was limited due to COVID restrictions, and she found herself finding comfort, information and community in digital spaces instead. It’s a pattern that’s been seen across the industry, as online apps and services have seen a boost in their subscriber base over the course of the pandemic.

Liz Eddy launched end-of-life planning app Lantern in 2019 after struggling with the death of several family members. Months later the pandemic hit, and Eddy found that the app was flooded with users, an increase of 450% within two months. 

“It was bizarre timing,” she says. “Obviously, we had absolutely no idea that the pandemic was coming, but within a month of launch we were starting to hear about COVID.”

What surprised Eddy the most about her inflated user base was that most new sign-ups weren’t people approaching the end of their life, or even at an age when individuals usually start to consider making plans for their death (only around 14% of Americans under the age of 30 currently have a will). In fact, the Lantern team found that the majority of new members were between the age of 25-45, a much more significant proportion of their user base than they had seen pre-pandemic.

“People are aware of their mortality and the need for pre-planning, but very few people actually do it,” she explains. “Something like COVID gives people an immediate reason… it’s a reminder of how unpredictable life can be.”

Someone who is finely attuned to how important technology can be when life takes an unpredictable turn is David Kessler. David lost his twenty-one-year-old son suddenly several years ago and found himself embroiled in a logistical nightmare when trying to close his late son’s bank account. He discovered Empathy, an app that claims to streamline end-of-life bureaucracy and promises to automate some of the more complicated aspects of the post-death process. David, who now works as a grief expert, was so impressed by how technology could reconfigure end-of-life planning and processing that he ended up joining the Empathy team, where he now works as the Chief Empathy Officer.

“There’s no denying that COVID has made grief a more prevalent topic,” he says. “Loss has no demographic. It affects everyone at some point in their life… technology can’t promise to take the pain away, but it can hold your hand through the process whilst also offering guidance in the often unknown terrain of grief.”

In a world where much of our lives take place online, it seems only natural that death should find its own digital niche. The pandemic has boosted an already burgeoning industry, causing younger generations to reflect deeply on what they want to leave behind. Mark Taubert, a palliative care doctor who has been working throughout the pandemic told us how apps can prompt his patients to think about preferred places of death or make their wishes known ready for when they are too unwell to communicate. He describes the relationship between technology and end-of-life care as deeply complex, acknowledging that the way that we manage grief is influenced by the people around us, society, and our own experiences – and that the pandemic has been crucial in prompting us to consider how technology might play a part in both life and death.

“Technology can nudge us into asking the right questions about what we’d want towards the end-of-life, but it can’t help us answer those essential questions,” he says. “There are sites, videos, and apps that talk very openly about choices we might face at the end of our lives, and it seems like these are prompting people to take control and actually tell their clinicians what they would and wouldn’t want. I hope that technology pushes us further into that openness and peer-supported patient empowerment.”

For Lucy, who is now living with her parents so that she can play a more active role in her dad’s care, the support of her colleagues and family has been crucial, but she says that without technology she would have felt “a whole lot more lost”.

“Technology and apps help me sit in the waves of anxiety that come with knowing that someone you care about is suffering,” she says. “Sometimes I feel like I’d do anything just for some rest from the distress. In a time when most of my usual relaxation and distractions techniques have failed me, technology has helped me to find solace.”

Complete Article HERE!

‘Death Doulas’ Provide Aid at the End of Life

End-of-life doulas support people emotionally, physically, spiritually and practically: sitting vigil, giving hand massages, making snacks.

By Abby Ellin

As parents of a child with a progressive and potentially fatal illness, Maryanne and Nick O’Hara lived on hope. Hope that their daughter, Caitlin, who was diagnosed with cystic fibrosis at age 2, would prove the statistics wrong and live longer than the 46 years expected. Hope that she would receive the lung transplant she spent two and a half years waiting for in her early 30s. Hope that her body wouldn’t reject it.

That hope faded on Dec. 20, 2016, when Caitlin O’Hara died of a brain bleed at the University of Pittsburgh Medical Center, two days post-transplant. She was 33.

Shattered, her mother decided to try to give meaning to her grief. And so she signed up for a certificate program at the University of Vermont’s Larner College of Medicine to become an end-of-life doula, or “death doula,” working with individuals and families as they moved from this life into whatever is next. (The terms “end-of-life doula” and “death doula” are used interchangeably, though some find the latter a little too blunt.)

“In our culture, we go overboard preparing for birth, but ‘hope for the best’ at the end of life,” said Ms. O’Hara, 62, who lives in Boston and Ashland, Mass., and is the author of “Little Matches: A Memoir of Grief and Light,” published in April. “The training was really a way of going even deeper into my own grief and realizing how I could take my own experience and help other people have a better end of life.

“I saw for myself how horrifying it is during a medical crisis and then after a death, to realize that life keeps going and needs attending to,” she continued. “As soon as Caitlin passed, suddenly it’s over and the person is gone and you have to deal with the business of living. A good doula will support you with that.”

The word “doula” comes from the Greek word meaning “woman who serves,” though most people associate it with someone who helps during birth to usher in life. In recent years, however, more people have come to recognize the need for as much assistance at the end of life as the start, part of the so-called death positivity movement that is gaining momentum in the United States and other countries. The movement, popularized by the mortician and writer Caitlin Doughty, encourages open discussion on death and dying and people’s feelings on mortality.

“The beginning of life and the end are so similar,” said Francesca Arnoldy, the lead instructor at UVM’s End-of-Life Doula program. “The intensity of it, the mystery, all of the unknowns. You have to relinquish your sense of control and agenda and ride it out, and be super attentive in the moment.”

Unlike hospice workers, doulas don’t get involved in medical issues. Rather, they support clients emotionally, physically, spiritually and practically, stepping in whenever needed. That could be a few days before someone dies, sitting vigil with them in their last hours, giving hand massages, making snacks. Or it could be months or even years earlier, after someone receives a terminal diagnosis, keeping them company, listening to their life stories or helping them craft autobiographies, planning funerals. Prices range from $25 an hour on up, although many, like Ms. O’Hara, do it voluntarily. And like Ms. O’Hara, many have signed on to help give new meaning to their own grief while helping others in the process.

More than 1,400 people have graduated from the UVM program since its inception in 2017. Coursework, which costs $800 for eight weeks, includes writing farewell letters to loved ones, crafting their own obituaries, completing legacy work or a “Life Story Project” with a trained volunteer, and starting or updating their own advance care planning files. The program also recently started a “StoryListening” research project in which mourners across the country are invited to share their stories of loss during the pandemic with a trained doula. At the end of the hourlong session, participants are given a recording of their own conversation.

Since its founding in 2018, the National End-of-Life Doula Alliance, a professional organization of end-of-life practitioners and trainers, has grown to nearly 800 members; membership nearly doubled in the last year, said its president, Angela Shook. Interest has increased in training programs with the International End-of-Life Doula Association, Doulagivers, and the Doula Program to Accompany and Comfort, a nonprofit run by a hospice social worker, Amy L. Levine.

Much of the growing interest in these programs has come from artists, actors, young people and restaurant workers who found themselves unemployed during the pandemic and recognized that they could still be of service.

“People were reaching out from a variety of different ages, younger than we would normally see, because they realized that people were dying in their age category, which doesn’t usually happen,” said Diane Button, 62, of San Francisco, a doula facilitator at UVM and a member of the Bay Area End-of-Life Doula Alliance, a collective of death workers. “It made them more aware of their own mortality and really made them want to plan and get their documents and advance directives in order.”

Rebecca Ryskalczyk, 32, a singer in Vergennes, Vt., had always felt “kind of comfortable” with death. She lost two cousins in a plane crash when she was 12 and a friend to suicide four years later. When Covid put her performing schedule on pause, she enrolled at UVM. Her goal is to let people know that they don’t have to be afraid of death; nor do they have to do it alone. “Being able to help advocate for someone and to spend the last moments of their life with them and help them stick to their plan when they may not be able to express that is an honor,” she said.

Before the pandemic, Kate Primeau, 35, also worked in the music industry. Last June, after her grandfather died of Covid-19, she began researching how to host a Zoom memorial and came across the concept of a death doula. “I felt a huge gap between the amount of grief everyone was feeling and the resources available,” she said. She got certified as an end-of-life doula through Alua Arthur’s company, Going with Grace, and also volunteers in a hospice program. “I can’t believe how much I’m geeking out over all this death education.”

During the pandemic, of course, doulas had to shift the way they worked. That was one of the main challenges: They couldn’t interact in person. So like the rest of the world, they resorted to Zoom calls and FaceTime. Families often reached out for their own healing.

“A lot are coming to me for ritual and ceremony when they can’t be with their loved one physically and they’re alone in the hospital room,” said Ash Canty, 34, of Eugene, Ore., who refers to himself as a “death walker.” “There’s a curiosity that wasn’t there prior to Covid. They’re wanting to know, ‘How do I make sense of this spiritually? How do I be with this? Because I’m really struggling.’”

As for Ms. O’Hara, who is also a novelist, she is primarily helping people write their life stories. Her training at UVM was “humbling.” “I went into it thinking ‘I’ve been a volunteer with people who are dying, I’ve lost my daughter, I’m an expert in grief,’” she said. But the longer she studied, the more she realized that she was only an expert in her grief.

“You really can’t tell anyone else how to grieve,” she said. “You can offer advice, but there’s no timeline for grief. As soon as people get a diagnosis, they’re grieving. Their way of life is over. Everyone has suffered some kind of grief with the pandemic, even if they haven’t lost a person.”

She believes that grief and joy can coexist. “My grief is never going to go away,” she said. “I wouldn’t want it to. Grief and joy and love — it’s all part of the same spectrum. I’m grieving because I loved someone so much.”

Complete Article HERE!

What Is a Death Doula?

Here’s Everything You Need to Know

by Sydni Ellis

Doulas are compassionate people who help others navigate some of life’s biggest transitions. Some doulas provide support and care to women bringing babies into the world, while others help ease individuals through the difficult and emotional passing of a loved one. These people are known as death doulas, or end-of-life doulas.

Recently, Riley Keough — granddaughter of Elvis and Priscilla Presley — announced on Instagram that she recently completed The Art of Death Midwifery training by Sacred Crossings and is on her way to becoming a certified death doula. In the post, she said, “I think it’s so important to be educated on conscious dying and death the way we educate ourselves on birth and conscious birthing. We prepare ourselves so rigorously for the entrance and have no preparation for our exit.” Riley’s decision to become a death doula comes almost a year after her brother, Benjamin, died by suicide in July 2020 at the age of 27.

Many other women have decided to take on this noble role of helping people in their final days. There are various courses that will certify you as a death doula, including the International End of Life Doula Association (INELDA). This association trains doulas to a high standard of professionalism, where they learn how to listen deeply, work with difficult and complex emotions, explore meaning and legacy, utilize guided imagery and rituals, assist with basic physical care, explain signs and symptoms of last days, guide families through the early days of grieving, and more. We talked to a few death doulas to find out more about this unique profession.

Dana Humphrey, a New York-based life coach and death doula who is certified through INELDA, told POPSUGAR, “Death doulas help the active dying transition with ease. We help them have difficult conversations with their loved ones, so they may say goodbye with grace. We help them figure out their legacy project and help them complete it. We add presence to the dying during a busy hospice environment. We also provide support to the family if they are having a hard time with the transition.”

Death doulas are the people that hold the hand of a dying person, ask them about their wishes and try to make them happen, and advocate for them every single day, according to Humphrey. Some of the things she might do include asking the dying person what mood they would like to see and feel when the family comes to visit and then setting that tone, like by having guests take a minute to sit down and move to a place of gratitude before visiting their loved one. Or she might have visitors meet in a “fun station” to put on funny hats or bedazzle themselves in glitter to add lightness in the room.

How Is This Different From Hospice Care?

Suzanne O’Brien, RN, is the founder of the International Doulagivers Institute, who’s mission is to provide awareness, education, support, and programs to communities, patients, and their loved ones worldwide to ensure the most positive elder years and end-of-life process. She told POPSUGAR that a death doula is “a nonmedical person trained to care for someone holistically (physically, emotionally, and spiritually) at the end of life.” This job “recognizes death as a natural, accepted, and honored part of life.”

After years of working as a hospice and oncology nurse, O’Brien felt unfulfilled working hospice, where nurses manage the dying patient’s care but teaches the family how to do the actual 24/7 care. She said she typically didn’t have enough time with patients on hospice as she was only allowed about one hour, once a week with the patient, and she encountered many families afraid of death. This helped her realize that death is “a holistic human experience and not a medical one,” and she wanted to become a death doula instead.

“Every day brings different needs, but it will always center around support,” O’Brien explained. “I will get called by a family whose loved one was just given a terminal diagnosis and they do not know what to do next, or a family whose loved one is actively transitioning and needs more help in the home. [I also get] many calls from families and community members looking for education and resources to help facilitate the most peaceful passing possible.”

How Do Death Doulas Help Marginalized Communities?

Donna Janda, Thanadoula practitioner (another term for death doula) and registered social worker, and Ananda Xela, Thanadoula practitioner and life coach with over 20 years’ experience in social work who has trained with INELDA, both founded Embracing Daisies to empower clients to “see the cycle of life and death not as something to simply rise above but as something to move through with soul and awareness, creating a living and lasting legacy.” They chose this profession to deal with their own feelings about death, as it helped them let death inform the fullness of their own existence, as well as to become part of this burgeoning field in which they didn’t see themselves or other BIPOC well-represented.

“There can be different ways of seeing and dealing with death, and when we talked to both clients within our Black communities and other doulas outside of our communities, we noticed the differences in approach and practice,” Janda and Xela told POPSUGAR. “A lot of the work that takes place in our own communities involves more emphasis on creating comfort around the idea of just talking about death in an honest and open manner before reaching the point of being able to plan for it. It can be a challenge for people who are already in vulnerable positions, historically and personally, to find the desire to face death and accept the idea that it can create more joyful living and offer more control over one’s own narrative — something that is often denied to marginalized peoples.”

Janda and Xela said, “To us, a death doula is someone who can hold space and offer support to both an individual and their loved ones in various areas all along the path between living and dying — from the parts where death seems unimaginable to the parts where it seems inevitable.”

As Thanadoula practitioners, these women hope to aid their clients in seeing that “life and death are connected and give meaning to each other.” They believe that deaths can matter as much as lives, and their job as death doulas is to help patients “discover, create, articulate, and manifest your heart’s wishes.” They also give families space to grieve by taking care of some of the more practical aspects that come from someone nearing the end of life.

What Else Does Someone Need to Know Before Becoming a Death Doula?

If you are thinking about becoming a death doula, you should have a passion for other people, an open-mindedness about death, and the courage to help people through difficult times. O’Brien said, “People often ask, ‘How can you do that work? It must be so depressing.’ I have to say that it is the exact opposite. Working as a death doula has been the hardest thing I have ever done, but the most fulfilling and rewarding. It is an honor and privilege to work with families at this sacred time. What you learn from those at the end of life is wisdom that teaches us about life. It is the best decision I have ever made.”

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