‘Pre-grieving is important – we talked, cried and laughed with Mum before she died’

Most of us think of experiencing grief after a death, not before, which means anticipatory grief is less talked about

By Claudia Tanner

Most of us think of grief occurring after a death. But anticipatory grief, or pre-bereavement, the painful emotions we feel before death, is experienced by many people facing the impending loss of a loved one or their own death. But as this experience is spoken about less often, some find it difficult to express the deep pain they are feeling and fail to receive the support they need.

Claudia Tanner spoke to Max Cassily, a 28-year-old area manager at Aldi, from Canterbury, Kent, about how he and his family dealt with his mother Nanda’s terminal illness at 54.

My dear mum was diagnosed with sarcoma, a cancer of the bone and soft tissue, in 2017. She’d shrugged her symptoms off as back pain.

She’d had cancer – of the breast – two years earlier and we thought we’d been through it all and it was over, she’d beaten it.

But this time around, the doctors told us straight: it was incurable. Our lovely, kind mother was going to die. They said she had three months left.

I remember just after we were told the bad news, all four of us – myself, mum, my dad Steve and my sister Ruby who is two years younger than me – all hugging and crying as we sat on a hospital bed.

Nand loved the colour pink

They say there’s five stages of grief – denial, anger, bargaining, depression and acceptance. Perhaps because we had dealt with my mum having cancer before and we had already felt all the anger and sadness, we were able to move more quickly to the acceptance stage. It was dad who said to us something along the lines of “We have got to do this, and accept this is happening.”

We knew we had to embrace this, talk about it, plan for it, cry about it.

I remember leaving the hospital, and the daughter of a woman with Alzheimer’s who was in the bed next to my mum hugged us and said she had loved sitting and listening to our conversations.

Open attitude about death

Last time it was all about staying positive and helping mum pull through. We knew this time, that approach wouldn’t help at all. It was a difficult decision to stop “fighting” her illness, but this was part of the process of accepting what was happening.

You may feel angry, mum was too young to go. It wasn’t fair. But you are so sharply aware of the fact there is little time to waste. Mum was going to die and we didn’t have long. We wanted to cherish the precious time we had left with her and make the most of it. Mum lived 180 miles away from me in Eastbourne, so I arranged with my employers to allow me my two days off a week to be taken together so I could spend quality time with her.

We took a really open attitude to talking about death and making practical arrangements. We announced on Facebook and other methods to everyone who knew Nand, as she was know , that she didn’t have long left and invited people to come visit our house week in, week out.

Mum had been a drama teacher who had spent half her time in Cyprus. People from all over, some she hadn’t seen for years, were grateful for the chance to say goodbye. They would apologise for breaking down, and we’d assure them it was okay. It’s only human to get upset.

We talked with mum about what funeral arrangements she wanted. She wanted to be cremated. She loved pink and was known as “The Pink Lady” due to her hair colour. She wanted a pink casket and a pink hearse. We were able to find the first but not the latter – there mustn’t be the demand for them!

She didn’t wan’t the flowers to go to waste and be cremated with her. She requested that everyone take a single stem home with them to enjoy.

Video camera to cherish memories

We had set up a video camera to record our chats with Mum. This helped with the practical side of remembering her wishes. It also allowed us to cherish the memories she shared.

There were plenty of tears, sad ones and happy ones. It was difficult watching her break down and grieve her own death.

But there were positives. It was a time to learn more about my mum’s past. I knew dad didn’t have a great memory so I wanted to take the chance to ask her all about her childhood and upbringing.

Mum was 26 when she met dad and he was just 18. It was unusual in those days, and she was the one who dealt with the more adult things – she was the breadwinner who got them their first house.

At one point, she looked deep in thought and she turned to me and my sister and she said, “You are all okay, you’re all happy aren’t you?” She knew Ruby had her boyfriend and child. She told me I was going to marry my girlfriend Nina. To be honest, I hadn’t even thought of marriage at that point. But mum, you were right, Nina and I tied the knot earlier this year.

Saying goodbye

Max finds comfort in watching videos of his mother talking in her final months

‘Talk about everything. It won’t change the fact that someone you love is about to die; but I promise you, it will certainly help’

We had lots of trips out, coffees and lunches, until mum got too tired and wanted to stay indoors. The last month was hard watching her struggle for breath.

On 27 February 2018, mum was rushed to A&E. She passed away while I was travelling in a desperate rush to get there on time. I remember balling my eyes out while driving, and not wanting to stop as I wanted to get to the rest of my family as quickly as possible.

I’d never seen a dead body before. I found it really helped to see Mum’s. She looked so peaceful and not in any pain, in stark contrast to the last few months.

Over 250 people attended her funeral. We live streamed in on Facebook and thousands watched it from 21 different countries.

I found it so comforting to watch back the videos of Mum in the months after her death. I got to see her laughing at jokes, crying at the situation, chatting about her first house that she bought 30 odd years ago. Just seeing how she was in her normal, every day life was lovely.

I started a blog about grieving to help other people deal with loss, which can be found here. It can be so easy to go into denial and not face difficult emotions when someone you love is dying. If I can help one person going through the same, that would be great.

Talk about everything. It won’t change the fact that someone you love is about to die, but I promise you, it will certainly help. I had felt I had to be “the strong one” to help everyone else out. So when someone asked how I was, I’d say “Yep, I’m fine”, when really I wasn’t. So I called a men’s mental health line. It helped to speak to someone I didn’t know.

Pre-grieving is an absolute emotional rollercoaster. At times you’re going to be frustrated, sad, angry and even happy, and that’s fine.

Max’s tips when facing a loved one’s death

Max’s blog outlines several pieces of advice:

  • Talk – if you don’t feel comfortable sharing with someone close speak to a professional. It’s okay not to be okay.
  • Capture you loved one on video – not only does it encourage you to talk through things, it also means you have memories on record and it can be a comfort to watch your loved one when they are gone.
  • Look after yourself – you cannot expect to look after and support your loved one if you don’t look after yourself.
  • Encourage people to say their goodbyes – it’s a chance to reminisce about old times and just generally have a laugh and forget about death.
  • Plan the funeral with your loved one – you’ll find comfort in knowing you’re following their wishes.
  • Embrace normality- try and do normal things as much as possible. Go for coffees, shopping, a meal, have friends over, watch TV, get a takeaway, and so on. A loved one with cancer is still a loved one, so, when possible, treat them the same and do the stuff you always used to do together.

Complete Article HERE!

How death positivity can help you live better

By Melissa Pandika

If I were to rank all of my fears, death — my own, and that of the people I love — would definitely be at the top of my list. It’s a pretty universal source of anxiety, whether we voice it or not. We cling to this fear, even if it won’t change the reality that all of us will die, eventually. The death positivity movement, however — which aims to shift this perception by encouraging a larger dialogue about death — is steadily growing.

Our anxiety surrounding death stems from how we tend to distance ourselves from the topic, explains Katherine Kortes-Miller, an assistant professor at Lakehead University and author of Talking About Death Won’t Kill You: The Essential Guide to End-of-Life Conversations. For many, “the only death and dying we see is on movies, where it’s heightened and traumatic, and not the death most of us are going to experience.”

The goal of death positivity is to “take death out of the closet,” Kortes-Miller says, so we no longer see it as a Big Scary Thing, but as an integral part of life. The nonprofit organization Death Cafe, for instance, has hosted thousands of loosely-structured events where people meet to “eat cake, drink tea, and discuss death,” according to its website.

Another group, Death Over Dinner, has a website that helps people plan dinners where they can discuss end-of-life issues, suggesting reading, audio, and video materials. Kortes-Miller co-organizes an event called Die-alogues, which hosts speakers and small-group discussions on topics like bucket lists, the use of social media to acknowledge death and dying, and animal companion death.

Popularized in a tweet by Caitlin Doughty, author of Smoke Gets in Your Eyes: And Other Lessons from the Crematory, death positivity is inspired by sex positivity, especially in its emphasis on choice. It advocates supporting people regardless of how they choose to die, whether it involves a green burial or aggressive medical treatments, explains Jillian Tullis, an associate professor at the University of San Diego whose research focuses on communicating about death in end-of-life settings. Creating space for the ways marginalized communities navigate death is another important part of death positivity — for instance, considering how much harder conversations about end-of life care might be for Black and Brown people, who have historically received worse healthcare than their white counterparts, Tullis says.

Millennials, ironically, seem especially interested in death positivity. (Doughty, for instance, is in her 30s.) Kortes-Miller notes that many young people have shared stories with her about family members who didn’t know how to deal with an aspect of a grandparent’s death, because no one talked about it. “They want to do more than the generation before,” she tells Mic. Tullis adds that many of her students have begun grappling with their mortality in the face of the climate crisis.

Death positivity sees normalizing death as crucial to wellness. Besides reducing anxiety around death, “it influences how we choose to live,” Tullis says. “When you have death and mortality as a guiding light, so to speak, it can help you understand what types of things are really important”— whether family, good food, or grand adventures — so we can prioritize them.

It can also help us prioritize who we spend our time with and how we spend it, and tease apart what’s really worth stressing over. Indeed, fully recognizing that life is finite can be freeing, Tullis says. She adds that talking about death also helps us make sense of it when it does touch our lives — and can better equip us to help others in our community make sense of it when it touches theirs, Kortes-Miller says.

By normalizing death, we can also begin learning more about what it’s like and talking to our loved ones about what we expect from them in the process, and vice-versa, Kortes-Miller says. This way, once we reach that point and can’t speak for ourselves, our loved ones can make important decisions — such as whether to pursue aggressive treatment or how to dispose of our bodies — based on what we actually want, not what they think we want, and we can do the same for them. “Nobody likes to think about dying and being sick,” Kortes-Miller says. But discussing these topics, however painful and difficult, can in fact be “a gift to the people we love.”

If you think death positivity could help you live your best life, here’s how to start embracing some of its tenets:

Take time to reflect

Figuring out your dying wishes may seem scary and depressing, but asking yourself the two questions Kortes-Miller suggests could help you ease into it: 1) What would you be willing to sacrifice in terms of quality of life for quantity of life? and 2) What are your non-negotiables — the important things about how you live now that you wouldn’t be willing to give up? Delicious food? Your memory? Your independence?

Start having conversations with the people closest to you

While self-reflection is important, the main goal of death positivity is to normalize death by having conversations about it, Kortes-Miller says. She suggests swapping stories about death with a good friend or partner. You could start by talking about the first time you learned about death and the message it conveyed to you. How do you want to use, and even disrupt, that message?

If that feels uncomfortable, starting with someone else’s story might be easier. A TV episode or a case you hear about on the news, like that of Brittany Maynard, who chose to end her life in 2014 after being diagnosed with terminal brain cancer, could act as a springboard, Tullis says.

Educate yourself

Add some death-positive books to your reading list. Kortes-Miller suggests Atul Gawande’s Being Mortal: Medicine and What Matters in the End and Katherine Mannix’s With the End in Mind: Dying, Death, and Wisdom in an Age of Denial.

Attend a death positive event, or host your own

Check out a Death Cafe or other event in your area that encourages conversations about death. And just because it’s death-focused doesn’t necessarily mean the vibe will be all doom and gloom. Death Cafes, for instance, “often have cake and interesting people,” Tullis says, and Kortes-Millers notes that Die-algoues events are often abuzz with conversation and laughter.

You could also host your own death party. Some of Tullis’s friends get together to play Morbid Curiosity, a board game that features trivia and conversation cards about, well, death. One card, for instance, asks players, “If you could come back as a ghost, who would you haunt? What are the rules to haunting?” “You don’t’ have to go out and plan your funeral if you’re not there yet, but you can do little things that are fun and a little bit enjoyable,” Tullis says. In the end, death may really be only as scary as we make it out to be.

Complete Article HERE!

Avoid or accept death?

Students reflect on planning own funerals

Students visit funeral homes near Chapman like the Shannon Family Mortuary on East Maple Avenue, as a part of their funeral home assignment.

by Micaela Bastianelli

Each semester, a new classroom is filled with inquisitive students intrigued to uncover the perplexities behind the taboo topic of death. Taught by Chapman sociology professor Bernard McGrane, the “Sociology of Death” course takes students on an enlightening journey to confront the reality of mortality.

It takes a conscious effort to confront the idea of your life ending, McGrane said. On some level, every human being knows that they are going to die; but some others refuse to believe that death will happen to them.

“There’s a quote by Woody Allen that says, ‘I’m not afraid of death; I just don’t want to be there when it happens.’ That encapsulates Western attitudes toward death,” McGrane said. “Out of sight, out of mind; it’s not going to happen to me.”

McGrane’s interest in teaching “Sociology of Death” stemmed from his earliest experiences with Buddhist teachings, as death and impermanence is a component of Tibetan Buddhism.

“I had an interest in Eastern philosophy and meditative ways. I started connecting with it very early on – philosophically and personally – in terms of my own practices and spirituality,” he said. “Through readings, I discovered so many different avenues on the history of death and dying and how radically that’s changed over the years. Through all of this, it came together as a course.”

In the McGrane’s course, one specific assignment seems to stand out to students most – the task of visiting a funeral home and planning one’s own funeral. Students began to organize their own funeral in detail – from finances to whether they would prefer a coffin burial or cremation. McGrane told The Panther that this investigative experience gives students access to the funeral industry, the state laws and the practical skills of arranging a funeral.

One of the funeral homes in close proximity to Chapman that students visited for their funeral home assignment is the Shannon Family Mortuary on East Maple Avenue in Orange. The Shannon family declined to comment

“I’m not always the most outgoing. To go and talk to a stranger about death was difficult,” said Andreas Ter-Borch, a senior sociology major. “But I didn’t expect the funeral industry to be a money-making machine. Not everyone can afford to give their loved ones the funeral they think they deserve.”

Although Ter-Borch doesn’t always feel comfortable talking about death, the course has helped him recognize the significance in doing so. He didn’t expect to become so emotionally invested in the class, but McGrane’s required journal writing became therapeutic for him, helping him understand that humans can’t fully enjoy the quality of life without first accepting death.

“We strive for longevity, even if the quality of life is bad,” Ter-Borch said. “We are way too focused on avoiding death rather than improving the quality of our lives and living our lives to the fullest.”

McGrane’s first taught the course in 1980 at Colby College in Maine, when it was titled “The Sociology of Death and Medicine.” In 1983, McGrane moved to California where he began teaching at the University of California, Los Angeles, renaming the course “Sociology of Death,” which he eventually transferred to Chapman. “When things weren’t as legally restrictive as they are now, I would take my students to watch autopsies,” McGrane said.

“I wanted them to be exposed to dead bodies.” Lily Florczak, a senior screen acting major and current student in this course, said that if observing autopsies was a part of McGrane’s curriculum today, she would feel uncomfortable, but ready for the exposure.

“His class prepares you for something like this,” Florczak said. “But I do think it would only be a good idea if people had the choice to opt out.”

Florczak enrolled in the class because she didn’t know how to handle death well and thought it would help her own growth.

“I have learned that grief is not a handbook or a series of rules that you follow and then you’re OK,” Florczak said. “It’s different and unique and intimate for everyone. Understanding that death is a part of life is a personal process one must go through in order to heal.”

Complete Article HERE!

This Seattle writer wants to change how we talk to kids about death

Facing her own terminal diagnosis, a cookbook author pivots to recipes for coping with grief.

After being diagnosed with terminal brain cancer, Seattle cookbook author Caroline Wright turned her attention to writing children’s books addressing grief and death.

by Tom Keogh

Seattle-based cookbook author Caroline Wright can teach you how to make a salad for four with grilled escarole, peaches, prosciutto, mozzarella and basil oil.

She can show you how a sandwich of grilled manchego cheese and sausage on peasant bread is made in the style of a master chef from Catalonia. For dessert, she’ll tempt you with a wicked coconut-caramel cake with malted chocolate frosting.

But when the leftovers are wrapped and put away, Wright can also impart some hard-won wisdom: how to talk to kids about death.

Wright, who studied cuisine at a renowned cooking school in Burgundy, France, always wanted to write as much as develop her skills in a well-appointed kitchen. At age 23, she became a food editor at Martha Stewart Living, and later brought her crisp, engaging voice to her cookbooks, Twenty-Dollar, Twenty-Minute Meals, Cake Magic! and Catalan Food: Culture and Flavors from the Mediterranean (co-authored with Daniel Olivella).

She hasn’t stopped writing about food. But in 2017 she was diagnosed with a glioblastoma, an aggressive, rapidly growing brain tumor, similar to the one that killed Sen. John McCain. With the possibility of death looming large, Wright turned her prose toward facing her own mortality — and starting the conversation with her kids.

Luminous and voluble in person, Wright is a self-described, inveterate doer. When not writing or cooking, she’s pursuing photography or quilting or knitting. She can’t stop making things happen, whether it’s tinkering with recipes for her next cookbook, or organizing a panel discussion at Town Hall (Saturday, Nov. 9) on children and grief. The event will explore how we talk to kids about death, a topic with no simple bearings.

Wright has written two recent books on the theme of child bereavement, inspired by her and her husband Garth’s agonizing challenge of communicating with their young sons about Wright’s still-uncertain prognosis.

The Caring Bridge Project (which came out in February) is a collection of Wright’s online journal entries from her year of chemotherapy and radiation treatment. It’s part of Wright’s written legacy to her boys, Henry, 7, and Theodore, 4. But she intended it, too, for a broader readership: families facing similar experiences with children’s anxiety and despair over loss.

This past summer she published Lasting Love, a picture book for reading aloud to bereaved kids. The heartbreaking but emotionally affirming story, with comforting illustrations by Willow Heath, is about a dying mother returning home from the hospital with a formidable friend: a mighty, furry creature who will always remain by her child’s side, as both an avatar of her powerful love, and as a faithful companion who never judges grief in any form.

Halfway through the tale, the mother passes.

“The child would know,” says Wright of her decision to include the mother’s death. “So stepping around that seemed silly. I wanted the kid to be part of spreading her ashes.”

For Wright, there was no option but honesty. She knew her kids would watch her change, physically, during treatment, and they would find her less available. Keeping them in the dark — especially the older boy, Henry — would have been unfair. “The thing kids can’t rebound from is broken trust,” she says. “There’s no resolution for that.”

When she and Garth first talked with Henry about her cancer, and how she and her doctors were doing everything they could, but she might die anyway, there were tears. But Henry devised a helpful analogy:

“Mommy’s brain is a garden, and there’s a weed in it.”

“Henry and I have had amazing conversations, poetic and hard,” Wright says. “If I die, I want both boys to have a relationship with their memories of me. If I lied to them, it would sully that relationship.”

Thirty-two months after Wright was told she’d likely have 12 to 18 months to live, she is miraculously cancer-free, but vulnerable to a swift reemergence of the glioblastoma. If you take cancer out of the picture, she actually became healthier while fighting the disease, radically changing her diet, dropping 40 pounds and growing lean and strong through yoga, energy work and exercise.

Wright says the boys now occasionally bring up her cancer at random times. When Theodore recently saw her short hair wet and matted after a shower, he grew weepy, recalling her treatment-related baldness, and associating it with being away from him.

The profundity of loss, and the despondency of a child left without the constancy of a loved one’s care, makes Lasting Love a benevolent bridge between a parent and son or daughter going through these troubles.

“The theme of Lasting Love is, literally, love lasting forever,” Wright says. “That’s what we were telling Henry. That was the only piece of hope that we could give him: Mommy’s fighting very hard. And even if mommy dies, the connection you have with her is never going to go away. And there are many loving people surrounding you.”

Wright’s Town Hall event is part of her outreach mission to regional families and to nonprofits concerned with children and bereavement. Among them is Safe Crossings, which supports grieving kids of all ages, at little or no cost. Amy Thompson, program coordinator, will join the panel, along with therapists from other organizations.

Thompson says the field of grief counseling for early childhood through adolescence is growing because of a rise in traumatic losses: gun-related murders, opioid-overdose deaths and suicides. Grieving kids are often isolated, subject to bullying, and told to “get over it” by clueless adults.

“The message from society to grieving young people is ‘move on,’ ” Thompson says. “But if you’re intensely grieving for months or even years after a death, there’s nothing wrong with you. Loss changes over time. As children grow and reach new developmental milestones, they can better process the permanency of death, and we see them regrieve.”

The attention Wright and Lasting Love are receiving in therapy circles and in the media is helping to normalize grief in children — in everyone, really. When she learned she had beaten seemingly impossible odds and, while not out of the woods, is without cancer, Wright celebrated with her family by making a favorite cake, although with a few adjustments: it was sugar-free, gluten-free and covered in carob frosting instead of her once-beloved chocolate.

“I live with great respect for this thing that may happen to me again,” Wright says of the glioblastoma cells that might still be lurking in her brain. “But I don’t live in fear of it. There is nothing to be gained by that. I might die and I might not.”

But the bond between parent and child will last beyond death, she says. “Kids are resilient. With support, they will have full lives.”

Complete Article HERE!

End-of-life doulas:

The professionals who guide dying people

Christy Marek is a certified end-of-life doula: she accompanies dying people and their families.

By

Doulas are tasked with maintaining a sense of calm for dying people and those around them, and opening the conversation about death and loss, topics that can often be taboo

In October of 2016, Gregory Gelhorn ran the Twin Cities Marathon. Seven months later, he was diagnosed with ALS, a progressive neurodegenerative disease that causes nerve cells to break down, resulting in muscle weakness and atrophy. The average life expectancy of an ALS patient, once diagnosed, ranges from about two to five years. The cause of ALS is not fully understood, and no cure is known. Gelhorn was in his mid-40s.

“It was a shock,” said Kathy Fessler, Gelhorn’s sister. “He was always the one who took the best care of himself.”

Dying from ALS is a singularly awful experience; the disease causes the body to progressively deteriorate while the mind remains clear and lucid. Gelhorn had loved being active. He had played three sports in high school, coached girls’ basketball and served as a travel director at Lakeville North high school in Lakeville, Minnesota. The disease progressed rapidly; soon, he was using a wheelchair and relied on a BiPAP machine to breathe. Doctors estimated he only had a few months left. Gelhorn and his family – his two teenage children, wife, parents, and siblings – began to grieve.

In the midst of it all, Fessler happened to see an article in the Star Tribune about Christy Marek, a certified end-of-life doula who lived only a few miles away. Fessler contacted Marek, who soon took on Gelhorn as a patient.

A doula, typically, is a professional who helps mothers during pregnancy and childbirth. Unlike midwives, doulas do not serve in a medical capacity; rather, their primary role is to provide emotional, physical and psychological support.

The practice originated in the natural childbirth movement in the US in the 1970s, alongside the Lamaze method and the popularity of alternatives to hospital birth, like water birth and home birth. That same generation of Americans who were having children in the 70s are now approaching their twilight years, and the practice of serving as a doula has expanded in scope. End-of-life doulas use the same concept as birth doulas: they provide support for the dying.

“On all sorts of levels, I think the Baby Boomers, that generation has just been here to shake things up,” said Marek. “The natural birthing movement, they did that. And now it’s the same thing. 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?”

End-of-life doulas are sometimes called death doulas, though many have reservations about the term.

“To me, end-of-life is a process,” said Marek. “The work I do with people isn’t just about that one point in time when somebody dies.”

Although doulas are not required to have medical training, many come from the healthcare field. Shelby Kirillin, an end-of-life doula based in Richmond, Virginia, has also been a neurointensive trauma nurse for over 20 years. It was her experiences in the neuro-ICU that led her towards becoming a doula. Many of the deaths she had seen there, she explained, struck her as cold, sterile and lonely.

“I just couldn’t imagine that the person dying had ever envisioned their death to be like that,” she said. “Dying isn’t just medical. It’s spiritual.”

Fascinated by the idea of a structured approach to end-of-life care that prioritized the individual wishes of the dying, Kirillin enrolled in a doula training course with the International End of Life Doula Association (Inelda), a not-for-profit that promotes the approach. Although there is no centralized regulatory body for doulas, training and certification programs are offered by a number of organizations, including Inelda and the Larner College of Medicine at the University of Vermont.
“There’s so much fear and anxiety about death,” said Janie Rakow, the president of Inelda. “The doulas are there to calm everyone down. They work with the dying and their families to educate, to explain what’s happening. That what they’re seeing is part of the dying process.”

Rakow and her business partner, hospice social worker Henry Fersko-Weiss, founded Inelda in 2015 to train doulas and promote their use in hospices, hospitals, prisons and homeless shelters. Their training program covers topics like vigil planning, active listening and doula self-care.

Part of what doulas do is open the conversation about death and loss, topics that can often be taboo or deeply uncomfortable for the dying or their family.

“Can you imagine if a woman was going through labor 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,” said Kirillin. “You have to talk about it. You’re dying and you’re no longer going to be here.”

Doulas help their patients plan out their deaths: talking with them about their wishes, and how they would like to spend their last day. Some prefer to die in a hospital, others at home. They decide who they want around them, whether it’s with all their family and friends, or a religious figure, or alone. They choose the details of the setting, whether they want to hear music, whether they want to have someone hold their hand, and what rituals – religious or secular – they want performed.

Doulas often also perform legacy work, the practice of guiding the dying to create tangible artifacts to leave behind for their loved ones. Sometimes, it’s a photo album, a collection of recipes, or a video archive. One of Rakow’s patients wrote a series of letters to her pregnant daughter’s unborn child, expressing her hopes and wishes for a granddaughter she knew she would never meet.

As death approaches, doulas are tasked with maintaining a sense of calm for dying people and those around them.

“One of my patients this past spring, as he was transitioning, he started to vomit,” said Kirillin. “I reminded everyone that when a woman is laboring a birth, sometimes she vomits. It’s the body’s natural way. Let’s just make him comfortable.”

Finally, the last part of a doula’s work comes a few weeks afterwards, when the doula meets with the deceased’s loved ones to reprocess and discuss everything that has occurred.

“It’s after the casserole brigade has come and gone, and everyone’s gone back to work,” Kirillin said. “We talk about grief and bereavement. You’re not going crazy. You can be happy and sad in the same moment. There is no timeline.”

Of course, the practice of guiding the dying on their final journey is not new. Death is not an unknown phenomenon, and the act of tending to the dying has existed as long as human civilization itself. Marek has a theory for why the need for a formalized approach to death has manifested now, in these particular circumstances – why the dying feel the need to contract a trained professional, rather than being able to rely on a more organic source of support.

“In America, a few generations ago, our communities were doing this work,” she said. “The reason the role is showing up in a formalized way now is that we don’t have those community ties any more, not in the same way, and certainly not the same level of responsibility to each other as used to be woven into our communities.”

Kirillin agreed: “I would love for our culture to never need me,” she said.

Much of doula work is the very definition of emotional labor, and though Janie Rakow suspects some doulas feel conflicted about taking money for their services, she sees the profession as no different from that of therapists or hospice workers.

“I had one of my patients tell me I wasn’t charging them enough,” she said, though Inelda also encourages pro bono work, and many doulas serve purely on a volunteer basis. She also cautions her doulas not to take on too many cases in a row, and to be cognizant of their own mental health. But, she said, the act of tending to the dying is not as depressing as many assume; rather, it can be very rewarding.

“When you sit with a dying person and they take their last breath, it is as amazing and awe-inspiring as someone taking their first,” said Kirillin. “It is important, and sad, and needs to be cherished.”

Gregory Gelhorn died in September 2018. He spent his last day in his home, surrounded by his family. Together, they watched a movie and listened to 90s prog-rock.

Complete Article HERE!

The Meaning of Life is That It Ends

How Horror Movies Prepare Us to Talk About Death

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“Most things will be okay eventually, but not everything will be. Sometimes you’ll put up a good fight and lose. Sometimes you’ll hold on really hard and realize there is no choice but to let go. Acceptance is a small, quiet room.”
–Cheryl Strayed

“That it will never come again makes life so sweet.”Emily Dickinson

There are a lot of uncertainties in life, but the only constant and known fact is that we all die. Despite this collective, inevitable experience that will eventually happen to everyone on the  planet, we tend to avoid this fact altogether. It’s a painful topic, death. A fickle, unfair shadow that situates itself deep in the recesses of our minds; and when brought to the forefront, it usually initiates debilitating emotions and forces actions that the majority of us are not prepared to deal with. Our affairs are not in order; our options for burials are limited and at the mercy of a funeral director; and we are forced to make finite decisions while experiencing agonizing grief. Despite our culture’s adoration for Halloween and horror films, death is still a subject that many prefer to view as an abstract concept. It’s cathartic and safe to embrace the grim reaper within a holiday or cinematic context, but when it comes to our own mortality we recoil at the thought.

Over the past few years, thoughts about burial practices, death preparation, and the acceptance of the horror genre have been progressively evolving. 2018 was the first time that more Americans decided to choose cremation over more expensive burials. Alternative death options are becoming more widely accepted and advanced to not only alleviate the pain for loved ones, but to help reduce damage to the planet while nourishing the growth of new life through one’s passing. Additionally, the horror genre is thriving. Jordan Peele’s Get Out won an Oscar for best original screenplay in 2018; there are continuous remakes of classic genre films like IT and Pet Sematary; and numerous children’s films that lean into the spooky fascination with death such as Goosebumps and most recently Scary Stories to Tell in the Dark are all becoming more mainstream.

In his book Scary Stories to Tell in the Dark, author Alvin Schwartz wrote “don’t you ever laugh as the hearse goes by, for you may be the next to die”, a line that is part of “The Hearse Song”. His trilogy of terror aimed at children was filled with creepy folklore tales and grim illustrations courtesy of artist Stephen Gammell. Straight-forward and blunt, Schwartz was revolutionary in his approach to conveying curiosities revolving around death for those at a young age. Through lore that spanned cultures across the world, he was able to shine light on a dark subject that many parents censor their children from entirely. However, this type of censorship ultimately does not help children. Just like Disney fairytales of a happy ending where the good guy always wins and true love is everlasting, it isn’t reality.

And yet, our society as a whole refuses to address the inevitable truths of life, death, heartbreak, and loss which inadequately and falsely prepare us for the day that we meet these experiences. In the film adaptation of Schwartz’s classic books, there’s a familiar storyline that accompanies haunted locations—the misinterpretation of the past and inflamed legacy of an individual who has passed away. Scary Stories features a character by the name of Sarah Bellows depicted as a sinister spirit who wreaks havoc on a group of friends once her book of self-written stories is stolen. In the end, young protagonist Stella addresses Sarah’s ghost and tells her that she will write her story the way it really was and let everyone know what really happened to her. This is a prime example of reclaiming one’s death (and life) in a manner they choose – a concept that is becoming more commonplace in the funeral industry and is a staple within the Death Positive Movement.

The average American funeral costs $8,000-$10,000, not including the burial and cemetery price tags. Many of the decisions around funeral preparation are made after a loved one dies. As a result, individuals are more easily taken advantage of and choose the most expensive and standard options not knowing for sure what their loved ones preferred to do with their remains, or if there are even alternatives. HBO’s new insightful and tender documentary Alternate Endings: Six New Ways To Die In America aims to introduce viewers to options that may be a better financial, emotional, and environmental fit for their death and the death of their loved ones. The documentary opens with scenes from the National Funeral Directors Association’s (NFDA) annual convention where hundreds gather to display and learn about the latest advancements or trends in the funeral industry. Companies offer the service of decorating personalized caskets, hologram eulogies, and even submerging one’s ashes in the dirt of their native homeland.

The six alternate endings mentioned in the documentary include: a memorial reef burial, living wake, green burial, space burial, “medical aid in dying” (MAID), and a celebration of life. The memorial reef, green, and space burials are all alternate options within the realm of a standard cremation or grave burial. Memorial Reef International builds artificial coral reefs to enhance coral generation, increase marine biomass, and provide eco-friendly alternatives that sustain life for hundreds of years. Another eco-friendly option is the green burial which skips the casket entirely as the body is wrapped in a shroud and placed directly into the earth. This method also bypasses the expensive cost of cement vaults in a standard cemetery which are just meant to keep the grounds even and easier for the landscapers to mow the grass.

As the effects of climate change grow increasingly dire, more and more people seek ways to give their bodies back to the earth to sustain new growth. Water cremation or aquamation is a form of green cremation which does not emit toxic chemicals nor does it contribute to greenhouse gases. Its carbon footprint is one-tenth of what fire-based cremations produce. In an article by National Geographic, it states “American funerals are responsible each year for the felling of 30 million board feet of casket wood (some of which comes from tropical hardwoods), 90,000 tons of steel, 1.6 million tons of concrete for burial vaults, and 800,000 gallons of embalming fluid. Even cremation is an environmental horror story, with the incineration process emitting many a noxious substance, including dioxin, hydrochloric acid, sulfur dioxide, and climate-changing carbon dioxide.” 

The traditional ritualistic aspect of funerals is also evolving. A terminally ill couple in Alternate Endings chooses to have a living wake, a celebration where loved ones and friends are able to say goodbye in person. By embracing their mortality, they’re allowing those close to them to say their final words and experience the appreciation of their life that they may not have realized had they kept their death at a distance. It’s a way to say how much you love someone to their face before you no longer have the chance. Living wakes are performed while the person is still alive and celebrations of life occur after someone has passed. After losing their five-year-old son, two parents in the documentary decide to fulfill their child’s wishes by throwing a party in his honor complete with five bounce houses, painting stations, and an appearance from Batman himself. Even at five, their son realized how sad funerals can be and facing his own death, he specifically requested he not have one. 

Now, if someone as young as five years old can embrace their mortality and make a decision about his passing, then why is it so hard for adults? There’s a stigma around death and it is easier to just ignore it as long as possible, but in the end, doing so can be detrimental. In fact, thinking about death can be a positive and productive practice. Mortician Caitlin Doughty understands this and set out to change the way we view death by creating the Death Positive Movement through her work with The Order of the Good Death. “The Order is about making death a part of your life. Staring down your death fears—whether it be your own death, the death of those you love, the pain of dying, the afterlife (or lack thereof), grief, corpses, bodily decomposition, or all of the above. Accepting that death itself is natural, but the death anxiety of modern culture is not.” This is achieved through various resources and advocacy. The name may sound like a cult, but I assure you it’s not.

In her book, Smoke Gets in Your Eyes, she describes her idea of a “good death” as being prepared to die, with affairs in order, the good and bad messages delivered, dying while the mind is sharp, and dying without large amounts of suffering and pain. It means accepting death as inevitable as opposed to fighting it when the time comes. Therefore, she has collaborated with an array of funeral industry professionals, academics, and artists to provide the best resources possible including information on end of life planning, green burial technology, as well as methods on how to alter our innate fear of death that has only been enhanced through recent (and unfortunately perpetual) devastating events in the news. 

While the horror genre provides viewers the chance to vicariously experience our fear of death in a safe, dissociative capacity, there are now more resources and options than ever before to help us face the inevitable. Instead of solely harnessing terror and sadness, there are ways to find beauty and inspiration in death. As Kafka said, “The meaning of life is that it ends.” Welcoming our mortality allows us to cherish people more because we don’t know how much time we’ll have with them. It is the driving force behind learning, loving, creating, and achieving what we want out of life. While death can be its own scary story, at least there’s comfort in knowing that it is something we will all face one day and there is some control you can have over the process as well as one’s legacy. And when that fateful day comes, let it be the good death you’d want for yourself and those you love, with plenty of peace and the least amount of pain and regret as possible.

Complete Article HERE!

What to Say When Someone Dies

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When someone you know is grieving, it’s natural to want to reach out and help. But often, it’s difficult to know what to say when someone dies. Faced with the enormity of loss, words feel inadequate. It’s not uncommon to feel paralyzed, terrified of saying the wrong thing.

There’s no perfect combination of words that will take away a grieving person’s pain. But there are ways for you to show them that you care, from sending a card, to bringing over a home cooked meal, or just showing up in person.

From what to write in a sympathy card to when it’s appropriate to pick up the phone, we asked grief advocates, therapists, and other experts for their advice on how to support friends and loved ones when someone dies.

When in doubt, reach out

Calling, texting, or showing up face-to-face are the best gifts you can give someone who’s grieving, says Dr. Kelsey Crowe, the co-author of There’s No Good Card for This and founder of Help Each Other Out. “Sometimes it’s just letting them know, ‘I want you to know you’re in my thoughts.’”

But before you pick up the phone, it’s worth considering your relationship with the person. “If you aren’t close, definitely don’t call within days of a tragic event or difficult news,” says Emily McDowell, co-author and illustrator of There’s No Good Card for This. “Phone calls can feel intrusive and overwhelming at this time. A card, an email, or a text is better. However, if you are good friends or close family, call! The person can always choose to not pick up.”

If you do call, let your friend or loved one know that you’re there for them, and make sure they know that there’s no pressure for them to call you back. If you’re not sure what to say, something along the lines of, “I’m so sorry to hear about [the person who died],” or “I can’t imagine what this must feel like for you” are good sentiments to fall back on.

Acknowledgement can go a long way, even if you don’t know the person well. If you run into someone you know is grieving, don’t avoid them or engage in small talk like everything is normal. Megan Devine, author of It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand says it’s best to let the grieving person lead.

“I tend to make eye contact,” Devine says. “And maybe a little nod of the head to say I see you, and I’m going to respect your space right now, but I want you to know that I see you.”

The best way to show support for someone who’s grieving is to let them know you’re there for them — and then actually show up.

“When words are inadequate, it’s your presence that makes a difference,” says Dr. Alan Wolfelt, the director of the Center for Loss and Life Transition. If there’s a funeral or memorial service, make an effort to attend. “You’ll always remember the people that do, in fact, show up,” Wolfelt says.

If you’re unsure what to say to someone at a funeral, it’s okay just to let them know that you’re sorry for their loss. It lets the person know that you recognize their pain without making any assumptions about their grief.

Even if you’re not close to the person who’s grieving, it’s almost always a good idea to send a card. If you’re unsure what to write in a sympathy card, it’s okay to keep it short and sweet.

“All you really need to say is some variation of: “I’m sorry you’re going through this. I’m here. I’m thinking about you, I love you,” says McDowell, who also has a line of empathy cards. “Your job here is to let the person know you care, and making the effort of sending a card is a great way to do this. Don’t be afraid to share a favorite story or memory about the person who has passed on.”

Gifts are another way to let someone know that you’re thinking of them, especially if you can’t be there in person. You can send something practical, like a book on grief or a voucher for a massage, or something sentimental. “I love to give flowers,” Crowe says, who recommends giving something that’s meaningful to you. “If you like music, make a playlist. If you’re crafty, knit a coaster.”

When someone is grieving, one of the simplest ways to show support is to offer to help with chores and other practical tasks.

Don’t wait for the person to ask for help. They might feel like they don’t want to burden anyone, or they might not even realize they need help, says Crowe. Just go ahead and offer — but be specific. While people often say “let me know if you need anything,” it’s much easier for someone to take you up on a specific offer. For example, you could offer to pick up the kids from school or day care, bring over a home-cooked meal, or help tackle a stack of paperwork.

Whatever you offer, make sure it’s something you can really follow through on. “It’s important that the offer is something you actually like to do,” says Crowe. “Don’t offer to cook if cooking is stressful for you, for example.”

“Many times, people in their anxiety will say silly, inappropriate things,” Wolfelt says. Often, people fall back on clichés and trite comments in an attempt to comfort people in grief, many of which diminish the loss, and cause unintended pain. Some phrases to avoid: everything happens for a reason; God wouldn’t give you more than you can handle; what doesn’t kill you makes you stronger; at least they lived a good life.

Another phrase to avoid: “I know how you feel.” Even if you’ve experienced a similar loss, you shouldn’t assume that someone else is feeling the same way you did. “Empathy gives you insight into some of the emotions your friend might be having, but saying ‘I know how you feel’ can sound dismissive of their unique experience, and cause them to feel alienated,” says McDowell.

Often, after someone dies, whether consciously or unconsciously, people avoid saying the person’s name. But Devine says you shouldn’t be afraid: saying the person’s name won’t make someone that’s grieving more upset; instead, it will let them know that you remember the person, and you’re open to talking about them. “If you are uncomfortable or worried about upsetting somebody, and they’re saying their person’s name, and you cringe and walk away, you’re erasing their person,” Devine says. “You’re basically saying, I don’t see this, this is too hard.”

Even after everyone else goes back to their day-to-day lives, it can be helpful to keep checking in on the person in the weeks and months after their loss.

“Loss doesn’t have an expiration date,” McDowell says. “If something truly bad has happened, a person’s life has changed forever, and just because time has passed, they probably haven’t stopped thinking about their grief.”

If you want to reach out but have no idea what to say, McDowell recommends starting with a simple question,  like “how are you today?” Adding “today,” acknowledges the fact that they’re going through something painful, while also giving the person an opening to share how they’re feeling.

Reaching out to a friend who has just lost a loved one can be daunting, but it’s better to try and risk making a mistake than not try at all. When people avoid addressing a tragedy out of fear of making things worse, the person grieving can end up feeling abandoned.

“If you don’t know what to say, it’s okay to say that,” McDowell says. “Our friends don’t expect us to respond perfectly and eloquently to every situation. They just want to know that we care enough to try.”

Complete Article HERE!