Category: Death Education

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How To Grieve When A Loved One Chooses To Die

By Chloe Gray

My great grandma, or Mia, as we knew her, was 100 when she decided she was ready to die. I found this out through a nonchalant conversation with my granny, her daughter, just after Christmas. She was eating a bowl of porridge at the breakfast bar, and said: “Mia wants to go, and that’s legal in Canada.”

Was I shocked? Not really. Although I didn’t actually know that Canada, where she had lived all her life, offered medically assisted dying (MAiD), my family are the type to take things into our own hands.

It’s a weird thing, euthanasia. It’s something you’re taught about in RE lessons at school, debating whether we have a right to ‘play God’. It’s something I agreed with as a faraway idea that I’d never have to consider. Something I thought was good in theory but hadn’t ever put any serious thought into the practice.

When I learned about Mia, I agreed with it still. Everyone I told did too, commenting on how brave her decision was and how amazing it was that she had this ‘opportunity’. They may have been thinking about the procedure itself rather than offering support but that was okay, because this was, overall, A Good Thing.

Meanwhile, with my family, talk swiftly turned to logistics. Timetables detailing who would be where and when were emailed around and the bank split Mia’s estate equally, with cheques ready to be collected by her children on the ride home from the facility. It helped the Canadian side of the family to deal with it Monica Geller-style, working pragmatically through the practical elements of her life.

“We’re more open to things that are predictable,” says Dr Anna Janssen, a psychologist specialising in palliative care. “There’s something safer about it, and that means we can be more flexible in our thinking and more open with ourselves and each other.”

But while they were handling the logistical side, it became very clear that we needed to introduce this flexibility into the emotional side of things, too.

The ‘five stages of grief’ ends with ‘acceptance’. The problem here was that for Mia to go with our blessing, we needed to accept her death before she actually died. That’s an unchartered process; grieving while someone is still alive and well(ish) feels weird. My auntie Penny summarised it perfectly, saying she felt she was going through grief sideways, like a breech birth.

Feeling emotion with a deadline meant we had to sprint through the confusion, the sadness, the relief of it all. If we had been Monica about the logistics, we Chandler-ed around the feelings part somewhat chaotically. But we still all felt weirdly…lucky? “With assisted dying, everyone involved has choice in the death,” explains Judy Tatelbaum, author of The Courage to Grieve. “That makes a great difference. Anticipatory grief is very healthy.”

But I was worried about what the minutes and days after she died would bring, seeing as we had already ‘grieved’. “Maybe the grief afterwards is easier, as some feelings have happened already,” said Dr Janssen. “But eventually there will be something new, because the context has changed, and you can’t feel it until the person has actually died.”

And so the 9th of January came. I asked not to know the exact time she was meeting her doctor, because what do you do in the minutes that someone you love is dying? In the most extreme version of the Schrödinger’s cat experiment, I went into a meeting, curious about whether she’d still be alive when I came out. She wasn’t. But there was an email telling the whole story, including how she had greeted the doctor by asking if he was the nice man who was going to help her.

Yes, my experience introduced a new closeness to my family. But it highlighted a flaw in the current MAiD plan. The message from the guidelines, the ethical debates and the psychologists I’ve spoken to is that assisted dying should be about having autonomy. It should make it easier, because you plan and prepare for the place, time, aftermath and even the feelings. But MAiD is such new territory that there are the same unknowns as with ‘regular’ dying.

Up until now, humans have only ever died after suffering through old age or illness or suddenly and shockingly in an accident. Those five stages of grief have been based on these same experiences over thousands of years. Now, suddenly, we’ve introduced a model where death can be scheduled into our diaries, and we can’t just apply the same rules. There are no history or self-help books to teach us how to navigate a brand-new type of grief that brings up a totally different, sporadic, rushed and uncertain feeling.

While there are articles and research papers discussing ethical, religious and legal boundaries, all the conversations have forgotten the people, families and feelings. And maybe that’s because, as Dr Janssen pointed out to me, it’s easier to discuss facts and figures than it is to discuss emotions.

For my family, MAiD was the first time we all properly discussed dying. Perhaps this is the taboo-breaking policy the world needs? You can’t send out a ‘save the date’ without telling people what for, after all. But to stop the turbulence, there’s still a grief taboo that needs to be broken. “We need to talk about the psychology of death and grief, but also the psychology of living. We talked about the death, but not about how we’re then meant to live well,” said Penny.

For families going through MAiD this year, in five years, or further in the future, when it could be a global policy, the system will benefit if we open up. “At the moment we don’t talk about it enough to know whether that [five stages] model requires more thought,” agrees Dr Janssen. “In my academic brain, I’m thinking we need to ask what MAiD means for people, but really, we’ll simply hear more if we take the time.”

My granny has since told me not to be shocked if she asks for MAiD. Is that a conversation she would have had with me if it wasn’t for Mia taking the plunge? Probably not. And while I haven’t yet applied my newfound skill for discussing death with anyone else, I’ll no longer hold back – especially when talking about my own.

Complete Article ↪HERE↩!

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What We Talk About When We Talk About Death

By Kelsey Osgood

One sunny Thursday evening in June, eight people, ranging from thirty-somethings to senior citizens, sat around a table at the Manhattan Jewish Community Center nibbling on cookies.

In front of them stood Sally Kaplan, one of three facilitators present from the organization What Matters, a New York City-based not-for-profit that facilitates group and individual conversations about advanced care planning. Sally interrupted the snacking to provide the group with a directive: pair off with the person next to you and talk about when you first realized you were mortal.

The participants looked around at each other; a few nervously giggled. There was a moment of uncertain silence. And then, everyone turned to their partner, and a rush of words poured forth. Death, it seems, can be confronted.

The What Matters event is just one example of a surge in Jewish programming focused on end-of-life issues, from speeches to workshops to unstructured discussions reminiscent of Death Cafes, where strangers meet over coffee and cake to talk about any topic related to death they so choose. (I’ve attended and written about death cafes before, although at the earlier ones I attended, participants ate pancakes or Chinese food rather than desserts.) The first “café mortel” was held in Switzerland in 2004. Since then, the movement has spread globally: from living rooms in Cincinnati to (thwarted) plans for a permanent café in London to China, where sickness and mortality remain taboo.

And the death café now has Jewish equivalents: Over the past years, death café-esque events have been held at Jewish community centers, senior homes, synagogues, and even mortuaries. Most recently, a coalition of Westchester County, New York synagogues organized a series[ of “death cafes” (the events were more structured than the traditional café mortel) centered around subjects like Jewish funerals and the afterlife in traditional Jewish thought. In Israel, Rabbis Miriam Berkowitz and Valerie Stessin, who founded the pastoral care initiative Kashouvot, have also hosted death cafes in the past. The Dinner Party, a network of meal-based gatherings for young adults who have experienced loss, currently offers kosher dinners in New York City.

In 2016, Death Over Dinner, an American initiative similar to Death Cafe, partnered up with IKAR, a Los Angeles-based non-denominational Jewish community, and Reboot, a nonprofit Jewish think tank, to launch Death Over Dinner: Jewish Edition.

“We launched [the pilot] on Yom Kippur, because that is the quintessential Jewish moment of facing our mortality,” says Francine Hermelin, the creative director of Reboot. Though Reboot and Ikar have hosted dinners themselves, in addition to having partnered with organizations like Moishe House and the Contemporary Jewish Museum of San Francisco, they also offer an online questionnaire that helps guide a potential host to stage a dinner in his or her own home. They soon plan to add printable cards with verbal prompts, including quotes from psalms, Talmudic wisdom, and food for thought from contemporary rabbis, as an additional resource.

“[This initiative] is to make that personal shift, and ultimately a cultural shift, where talking about death is no longer a conversation we’re afraid of but a conversation that we are embracing,” Hermelin says.

The increased focus on mortality in recent years is likely the result of a combination of factors: an aging population living increasingly longer and facing unprecedented healthcare situations, a greater openness towards talking about historical taboos generally, and a growing consumer interest in wellness, including a concept of “the good death.” And Jewish initiatives focused on death and mourning want to take part in this larger dialogue, using spirituality and Jewish tradition as a foundation. Indeed, a 2017 Pew study found that “geographically and theologically diverse” faith communities were uniquely suited to address concerns around death and mourning, even for those with no prior religious affiliation.

“We [in the Jewish community] seized upon this wave,” says Kaplan, who points to books like Atal Gawande’s On Being Mortal and Paul Kalanithi’s When Breath Becomes Air as examples of the trend. Though What Matters is non-denominational––Kaplan describes it as “value neutral and person-centered”––Kaplan says she sees confronting mortality through discussion as a “very Jewish” enterprise, one she feels is reflected in Jewish texts. “People are surprised that there are so many Talmudic stories that deal with advanced care planning!” For further insight, Kaplan referred me to Rabbi Mychal Springer, Director of the Center for Pastoral Education at the Jewish Theological Seminary, who cites the story of Rabbi Yehudah Ha-Nassi, who was unable to die while his students were incessantly praying for him, until his handmaid dropped a jug from the roof and distracted them. In the moment of silence, Ha-Nassi was able to depart peacefully. ” This is a classic example of the way the rabbis were saying we shouldn’t prolong the dying process,” Rabbi Springer said.

Support doesn’t always come in the form of face-to-face groups: Lab/Shul, a creative Jewish community based in Lower Manhattan, operates an initiative called Kaddish Club, which includes a monthly potluck dinner in New York City, and a 15-minute weekly phone call they’ve dubbed Virtual Mourners’ Kaddish. During the calls, which began in 2014, the far-flung bereaved reflect on their departed loved ones, share some wisdom, and then recite Kaddish together.

“We’ve had folks call in from all over the country and all over the world,” says Sarah Strnad, Lab/Shul’s Director of Operations. “A lot of the traditional options [i.e. daily kaddish in a synagogue setting]… don’t always work in our modern lives.” Strnad says one of the most moving things about the calls is how they end up becoming micro-communities. “Even on the virtual calls, when people might never see each other in person, they remember each other’s stories and they can give each other support week after week.”

Of the current offerings, few are Orthodox in orientation. This might be because those who identify as Orthodox see processes around death as strictly prescribed ––decisions about life support deferred always to the ordained, mourning periods a certain length, prayers predetermined –– and therefore not necessary to hash out.

But Elad Nehorai, founder of Hevria and Forward contributor has imminent plans to hold a death café that will include a more observant audience (though he hopes to provide a space for the observant, he stresses that anyone is welcome). Nehorai, who has attended “secular” death cafes in the past, told me, “It was actually my fascination with death that caused me to choose to be Hasidic after growing up secular. Death has this fascinating power to force us to face what we really believe. Even as believers, we must face our beliefs in a brave way.  Death forces us to do that.” (Full disclosure: Elad and I collaborated in organizing this event.)

During the course of my writing this piece, I attended my grandfather’s memorial service, tried to comfort a friend whose loved one was gravely ill, and heard a rabbi speak about ministering to a father grieving for his child as one of his first clerical duties.

Even though I had thought it slight hyperbole when she said it, I realized Francine Hermelin’s assertion that “we’re always experiencing death” was absolutely true. Though we may find it difficult to face our end with courage, as Nehorai hopes we can, we should do our utmost to be as prepared, emotionally, logistically, and spiritually, when the time inevitably comes, for as it says in Genesis, “For you are dust, and dust you shall return.”

Thankfully, there is increasingly more out there to help us do just that.

Complete Article ↪HERE↩!

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How to die the way you want

Tackling the tough questions over a cup of tea or coffee

By

We’re all dying, every one of us.

But we learn early on that despite the fact our lives are universally finite, most people don’t want to talk about it.

We’ll talk sex, we’ll talk drugs, we’ll even talk money—but not death.

That could be changing with the proliferation of so-called Death Cafes, informal get-togethers in cities across America, Europe and Asia, where people eat a little something, drink some coffee maybe and talk about, well, the inevitable.

The mission is to revamp typically depressing and urgent end-of-life discussions to more leisurely “Everything-I-Wanted-To-Know-About-Death-But-Was-Afraid-To-Ask.”

The conversation ranges, and depends on the group of people who’ve gathered: anything from how much a funeral costs to the details of a “green” funeral (think: corpse as compost) to tips on how to talk to your family members about your own funeral.

There’s a range of people who attend, too, from someone who had a death in the family and wants to be better prepared next time, to health care providers who want a different perspective on dealing with death. They range in age from 20-somethings to 90-somethings.

The object: to turn death from a feared end to something that is part of life.

“Death Cafés change the way you live in the most profound and wonderful way,” says Kim Mooney, 67, who runs monthly meetings in Longmont, Colorado.

Mooney even held a few events in a mortuary. “I like to say it’s the only time you will walk in and walk out of one, so you might as well take advantage of it.”

Death café hosts tend to have a sense of humor.

Death on twitter

If you want to confirm the popularity of the death positive movement, just go on social media. There’s The Death Café Facebook group, which lists times and dates of meeting and has more than 50,000 likes and followers. 

Or you could follow Death Café on Twitter. 

Advocates say the meetings allow people a low-pressure way to express fears about the Great Unknown; to chat about the way other cultures handle death; and to share practical information, such as learning the nuts and bolts of filling out end-of-life forms.

Talking with strangers, hosts say, is often an easier way to broach the topic before launching a conversation about death with loved ones.

Lizzy Miles is a hospice social worker who hosted America’s first café in 2012 in Westerville, Ohio. She baked cookies in the shape of tombstones with grey icing and “Death Café” where the epitaph normally goes.

She is one of more than a 100 Death Café hosts in this country. She’s still hosting—and still making treats—for nearly a dozen people who show up each month.

Yes, these are the cookies Lizzy makes for her Death Café guests in Ohio.

“No one ever comes to a Death Café already uncomfortable talking about death,” she says. “If you are, you’re not going to come. We have a lot of sandwich generation people, who are taking care of their parents.”

Miles is so committed she even traveled to a Death Café in Hong Kong—“on my own dime!”—to see what it was like. 

“It was amazing, people were speaking English and Mandarin and Cantonese,” she says. “And I thought ‘Oh my gosh, all these different languages. This is pretty cool but almost exactly the same.’” 

Dos and don’ts

Anyone can be a host, but there are guidelines. The Death Café website has a set of guidelines and Miles herself was a co-author on an article that included a list of dos and don’ts in the Omega Journal of Death and Dying: 

Do: Allow a space for folks to share their ideas respectfully and openly. 

Do: Offer the opportunity for everyone to speak but allow those who want to remain silent to do so. 

Don’t: Charge an admission fee. 

Don’t: Sell death-related products. 

Don’t: Turn the group into grief support. 

Miles and others believe that confronting our mortality will prompt us to the make the sorts of life changes that some folks do only when confronted with a fatal disease. Why wait? 

Shellie Balogh, a 61-year-old hospice nurse attended one of Miles’ cafés in Ohio.

 “It wasn’t what I expected; it was more upbeat,” she says. “It’s a fun thing to do if I have a free Saturday. You go and meet people you may never see again and just have this conversation, opening up this forbidden area of discussion.” 

A midwife for dying

Suzanne O’Brien hosts a New York City group that meets at a public library on the Upper West side. She’s a nurse turned death doula.

Death doulas—part of this burgeoning “death-positive” movement—provide the same sort of bedside care, comfort and companionship that birth doulas offer to pregnant women but at the other end of the life cycle. 

O’Brien said monthly conversations tend to fit into five buckets, sometimes all five covered in one 90-minute session: 

The physical: How do I make sure I’m comfortable during my dying hours. What do I want to happen to my body? 

The financial: What forms do I need to fill out? Or how much money do I want to spend on a funeral versus, say, end-of-life care? 

The emotional: How do we deal with potential regrets or forgiveness? 

The mental: Reasoning and acceptance  

The spiritual: How do beliefs about death inform the way we live.  

One woman wanted to know how to donate her body to a medical school anatomy class. She also wanted to make sure her family would not be given the leftovers when the students are done picking her apart, something she had heard can happen. 

She told the group: “I’d rather just be flushed.” 

Banishing the secrecy

The idea of a group of a random community members chatting about death over refreshments was the brainchild of Swiss sociologist Bernard Crettaz. He launched a “Café Mortel” in 2004 in the lakeside town of Neuchâtel, Switzerland. A dozen mortal members attended. 

The point, as he once told a reporter for the Independent, a British newspaper, was to remove death talk from its “tyrannical secrecy.” 

The first cafe outside of Switzerland was held by John Underwood,  who hosted in his London basement in 2011. He’s given credit for helping the movement go global; he died last year, at the age of 44, from undiagnosed leukemia.

Today, there are death-with-food meetings in about 55 countries—including the U.K., Italy, Hong Kong, Finland, the Netherlands and New Zealand.

Becoming a regular

Those who are regulars say that while the subject matter is death, the meetings are not sad. Hosts emphasize that they are not grief support groups, more death-curious groups.

Jane Geller, a retired schoolteacher in New York City attends the Upper West Side meeting nearly every month.

“It’s a misnomer to think it’s depressing,” she said. “Death Cafés are really about life.” 

Shatzi Weisberger, an 88-year-old retired nurse from New York City is a regular, too. 

 “I was always especially interested in how we come into this world and how we leave it. When I got into my eighties, I got personally interested for my own edification.” 

Last fall, she hosted her own “FUN-eral” (pronounced Funn-eral) in the common room of her apartment building. More than 100 attendees came to the event. It sounded like a macrabe-themed birthday but she said it was a death, not a birth, party. And a way to attend her own funeral. 

She said she has planned her own green burial. “I’m going to be wrapped in a shroud and buried in the woods upstate and my body will deteriorate and something will grow.  I don’t know if it will be grass or flowers or a tree so I feel my dying is bringing life into the world. That’s not depressing at all.”

Complete Article ↪HERE↩!

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Research examines living well while dying

by University of British Columbia

A UBC professor has determined that people diagnosed with terminal cancer—who have hope, positivity and family support—are able to live well during the advanced stage of the disease.

Carole Robinson, professor emeritus with UBC Okanagan School of Nursing, recently published a paper explaining the process of living well with an awareness of dying.

“While there is a growing body of research focused on select aspects of people’s experiences with advanced cancer, there is little research examining the process of living with advanced cancer across the trajectory towards death,” says Robinson. “Even patients whose prognosis is limited are living longer and want to live well, making this issue a global concern.”

Robinson notes that globally there are 14.1 million new cancer cases diagnosed each year, 8.2 million cancer deaths, and 32.6 million people living with cancer. Historically, researchers have studied the concept of living well with a , but not specifically cancer. Robinson says those studies convey the idea it may be possible to live well with advanced cancer, but little is known about how it is done or how to support it.

The study analyzed 22 interviews with Spanish residents involved in previous research that explored their experience of living with advanced cancer. The researchers found the engaged in a five-phase iterative process: struggling, accepting, living with advanced cancer, sharing the experience and reconstructing life. This process revolved around participants’ awareness of dying, which differed from people living with chronic illness and was a unique aspect of this newresearch.

Each phase was revisited, and as the disease advanced living well got more challenging. Participants talked about strategies for living with advanced cancer, including making life adjustments, maintaining a positive attitude, normalizing and hoping.

Over time, participants realized struggling against the disease created additional difficulties. In fact, they understood it was counterproductive so they made a conscious choice to let go of struggling. Some referred to it as being the only choice they could make while living with the uncertainty of advanced cancer. This enabled accepting their life circumstances at some level and learning to live alongside their illness.

Robinson says that the importance of family love and support cannot be underestimated. For all the participants, she adds, awareness of dying led them to focus on living well. Sharing the experience with loved ones softened suffering remarkably. They were aware they did not have time to lose.

“Although it might happen in moments, participants were able to put behind them and live life rather than living their illness,” she notes. “Living in the moment enabled deep appreciation of everyday things such as the beauty of a flower garden.”

Robinson says the key takeaways to living well encompass a balance between dependence and independence, being able to see the positive and maintaining hope even in the end stages of the disease.

“The participants in this study worked hard to live a life rather than live an illness,” says Robinson. “The implication here is to support the positive. It has been found in previous research that hoping for a cure when is advanced is not lack of awareness—it can be a choice in focusing simply on positive possibilities.”

Complete Article ↪HERE↩!

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A Dying Young Woman Reminds Us How to Live

THE UNWINDING OF THE MIRACLE
A Memoir of Life, Death, and Everything That Comes After
By Julie Yip-Williams

Julie Yip-Williams

By Lori Gottlieb

When we meet Julie Yip-Williams at the beginning of “The Unwinding of the Miracle,” her eloquent, gutting and at times disarmingly funny memoir, she has already died, having succumbed to colon cancer in March 2018 at the age of 42, leaving behind her husband and two young daughters. And so she joins the recent spate of debuts from dead authors, including Paul Kalanithi and Nina Riggs, who also documented their early demises. We might be tempted to assume that these books were written mostly for the writers themselves, as a way to make sense of a frightening diagnosis and uncertain future; or for their families, as a legacy of sorts, in order to be known more fully while alive and kept in mind once they were gone.

By dint of being published, though, they were also written for us — strangers looking in from the outside. From our seemingly safe vantage point, we’re granted the privilege of witnessing a life-altering experience while knowing that we have the luxury of time. We can set the book down and mindlessly scroll through Twitter, defer our dreams for another year or worry about repairing a rift later, because our paths are different.

Except that’s not entirely true. Life has a 100 percent mortality rate; each of us will die, and most of us have no idea when. Therefore, Yip-Williams tells us, she has set out to write an “exhortation” to us in our complacency: “Live while you’re living, friends.”

Before her diagnosis in 2013, Yip-Williams had done more than her share of living. It was, indeed, something of a miracle that she was alive at age 37 when she traveled to a family wedding and ended up in the hospital where she received her cancer diagnosis. Born poor and blind to Chinese parents in postwar Vietnam, she was sentenced to death by her paternal grandmother, who believed that her disability would bring shame to the family and render her an unmarriageable burden. But when her parents brought her to an herbalist and asked him to euthanize her, he refused.

The family would eventually survive a dangerous escape on a sinking boat to Hong Kong, and less than a year later make their way to the United States, where at 4 years old, Yip-Williams had a surgery that granted her some vision, if not enough to drive or read a menu without a magnifying glass.

She would go on to defy her family’s expectations, eventually graduating from Harvard Law School, traveling the world solo and working at a prestigious law firm where she meets Josh, the love of her life. She becomes a mother and, soon after, a cancer patient, and soon after that, because of this unfortunate circumstance, a magnificent writer.

During the five years from her diagnosis to her death, we enter her world in the most intimate way as she cycles through Elisabeth Kübler-Ross’s famous stages of grieving: denial, anger, bargaining, depression and acceptance. Describing the ways in which terminally ill patients cope with their own deaths, these stages weren’t meant to delineate a neat sequential progression but rather the various emotional states a dying person might visit, leave and visit again.

Yip-Williams toggles between optimism and despair, between believing she’ll defy the statistics as she had so many times in her life — “odds are not prophecy” — and trying to persuade her husband to confront their harrowing reality. She makes bargains with God, just as she did as a young girl when, in exchange for her poor vision, she asked for a soul mate one day. (“God accepted my deal!”) She posts pictures of contented normalcy on Facebook — of meals cooked, a car purchased — but rages at her husband, healthy people, the universe and, silently, at the moms at a birthday party who ask how she’s doing. “Oh, fine. Just hanging in there,” she replies, while wanting to scream: “I didn’t deserve this! My children didn’t deserve this!” She frets about the “Slutty Second Wife” her husband will one day marry and the pain her daughters will experience in her absence. And, near the end, she oscillates between being game to try every possible treatment and accepting that nothing will keep her alive.

“Paradoxes abound in life,” Yip-Williams writes in a heart-rending letter to her daughters; she asks us to confront these paradoxes with her head-on. One of the paradoxes of this book is that Yip-Williams writes with such vibrancy and electricity even as she is dying. She moves seamlessly from an incisive description of her mother as “the type of woman who sucks blame and guilt into herself through a giant straw,” to the gallows humor of “Nothing says ‘commitment to living’ quite like taking out a mortgage,” to the keen observation “Health is wasted on the healthy, and life is wasted on the living.” Unlike the woman in her support group who, after being given a terminal prognosis, defiantly declares, “Dying is not an option,” Yip-Williams prepares meticulously for her death while paying close attention to the life she will one day miss: “the simple ritual of loading and unloading the dishwasher. … making Costco runs. … watching TV with Josh. … taking my kids to school.”

This memoir is so many things — a triumphant tale of a blind immigrant, a remarkable philosophical treatise and a call to arms to pay attention to the limited time we have on this earth. But at its core, it’s an exquisitely moving portrait of the daily stuff of life: family secrets and family ties, marriage and its limitlessness and limitations, wild and unbounded parental love and, ultimately, the graceful recognition of what we can’t — and can — control.

“We control the effort we have put into living,” Yip-Williams writes, and the effort she has put into it is palpable. Of all the reasons we’re drawn to these memoirs, perhaps we read them most for this: They remind us to put in our own effort. It would be nearly impossible to read this book and not take her exhortation seriously.

Complete Article ↪HERE↩!

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What the Death of a Child Does to Parents,

Psychologically and Biologically

Though parents mourning the death of a child experience classic psychological, biological, and social grief responses, there are unique challenges.

By

The death of a child may be considered the worst trauma that any human can experience. Though it’s not a terribly common experience in the United States—about 10,000 children between the ages of 1 and 14 died in 2016—the horrific potential for childhood mortality looms large. While reassuring, the numbers also make plain why this one specific type of loss is so feared, so painful, and so stigmatized. 

“The death of a child is considered the single worst stressor a person can go through,” says Deborah Carr, chair of the sociology department at Boston University. “Parents and fathers specifically feel responsible for the child’s wellbeing. And they’re not just losing a person they loved. They’re also losing the years of promise they had looked forward to.”

Although parents mourning the death of a child are, in many ways, experiencing classic grief responses— usual battery of psychological, biological, and social repercussions—there are many unique challenges. The trauma is often more intense, the memories and hopes harder to let go of. As such, the mourning process is longer and the potential for recurring or near constant trauma is far greater. “The death of a child brings with it a range of different and ongoing challenges for the individual and the family. Everyday questions such as ‘How many kids do you have?’ can trigger intense distress.” explains Fiona MacCullum, a professor at the University of Queensland. “Some people do find ways of living with the loss. Others struggle to find meaning in life.”

Psychological Impacts: How The Trauma Of Child Loss Harms The Psyche

Interestingly, very few studies have delved into the nightmare of the death of a child. Most of the research on the psychological response to death focuses on the loss of a spouse or a parent. Presumably this is in part because of the difficulty of finding subjects for study and also in the potential difficulty of recruiting participants in anything longitudinal.

“While there have been significant advances in our scientific understanding of grief, we have a long way to go,”  MacCullum says. 

That’s not to say we are without literature. One 2015 study of 2,512 bereaved adults (many of whom were mourning the loss of a child) found little or no evidence of depression in 68 percent of those surveyed shortly after the tragedy. About 11 percent initially suffered from depression but improved; roughly 7 percent had symptoms of depression before the loss, which continued unabated. For 13 percent of the bereaved, chronic grief and clinical depression kicked in only after their lives were turned upside down. (If those numbers seem low, it’s worth remembering that it is entirely possible to be deeply sad without being depressed.)

Unfortunately, the research suggests that psychological damage done by a child’s death often does not heal over time. One 2008 study found that even 18 years after the death of a child, bereaved parents reported “more depressive symptoms, poorer well-being, and more health problems and were more likely to have experienced a depressive episode and marital disruption.” While some parents did improve, “recovery from grief…was unrelated to the amount of time since the death.”

“The first year after losing a younger child, a parent is at an increased risk for suicide and everything from major depression to complicated grief,” Dr. Gail Saltz, a psychiatrist at the NY Presbyterian Hospital Weill-Cornell School of Medicine, told Fatherly. Complicated grief differs from expected, normal grief, in that “there are more intense symptoms, alternating with seemingly no symptoms—a numbness—which potentially impairs their ability to function.”

“A parent who grieves without any type of serious complications, such as suicidal thoughts or self-harm behaviors, would be the best-case scenario,” says Dr. Kirsten Fuller, a physician and clinical writer for the Center of Discovery treatment centers. “Worst-case scenarios would be experiencing suicidal tendencies, psychosis or developing a mental health disorder or an eating disorder.”

Biological Impacts: How The Death Of A Child Changes A Parent’s Body

The impacts of this tragedy are not solely psychological. In 2018, Frank Infurna and colleagues looked the general health and physical functioning of 461 parents who had lost children over the course of 13 years. “We did see some decline, followed by a general bounceback, or recovery, over time,” Infurna, who studies resilience to major stressors at Arizona State University, told Fatherly. Physical functioning was focused on one’s ability to complete various everyday tasks, and “we didn’t see much change in this,” Infurna recalls. But when he reviewed bereaved parents’ self-reports—whether they felt they got sick often, or whether they expected their health to improve or decline— he found poorer perceptions of health.

As with all major grief responses, the mental health trauma of losing a child can kick off physical symptoms, including stomach pains, muscle cramps, headaches, and even irritable bowel syndrome. A handful of studies have found more tenuous links between unresolved grief and immune disorders, cancer, and long-term genetic changes at the cellular level.

One surprising impact, often seen among parents mourning the loss of a child, is known as broken heart syndrome—a condition that presents oddly like a textbook heart attack. Symptoms include “crushing chest, pain, ST-segment elevation on electrocardiography, and elevated cardiac enzyme markers on lab results,” Fuller says, citing her previously written work on the subject. “As a reaction to emotional or physical stress, the body’s natural response is to release catecholamines, also known as stress hormones, that temporarily stun the heart muscle.”

Chronic stress can even impact how the brain functions, as long-term exposure to the stress hormone cortisol has been linked to the death of brain cells. And in a cruel twist of neurobiology, the regions of the brain responsible for grief processing, such as the posterior cingulate cortex, frontal cortex, and cerebellum, are also involved in regulating appetite and sleep. This may explain why grieving parents develop eating and sleeping disorders in the aftermath of the loss.

“There are many many studies that have looked at the ongoing health effects of high levels of chronic stress,” Saltz says. “And when you look at lists of stressful life events, this is at the top.”

Social Impacts: How Child Loss Strengthens (Or Ruins) Families

Major life stressors naturally take a toll on marriages. But divorce in the aftermath of a child’s death is not inevitable. “It’s really important to underscore that the death of a child is not going to ruin a marriage,” Carr says. “It generally makes a troubled marriage worse, and a strong marriage better.” When dealing with illness or addiction, spouses who disagreed over the best course of treatment are at particularly high risk. “If one spouse blames the other, or feels the other did something to hasten the death, that’s almost something that cannot be recovered from.”

There are also factors, beyond the couple’s control, which may sour or save the marriage. “Grief, trauma, and depression impact one’s ability to participate in all meaningful relationships,” Saltz says. “But I have seen couples where the opposite is the case. They become closer, they support each other. This is the only person who can really understand how you feel.”

Mothers and father who lose a child often must also contend with surviving siblings. Figuring out how to parent after losing a child is a unique challenge and here, too, experts agree that the outcomes for both the surviving children and parents largely depend on the state of the relationship before the trauma. The death can both bring a family together or tear it apart.

When dealing with terminally ill children, one particular risk is that other siblings may feel neglected, or find too many responsibilities foisted upon them while the parents shift their focus solely to the suffering child. A sick kid “is going to consistently get more attention, because they have to,” Carr says. “Sometimes the other children’s needs aren’t met, or they are treated like little adults, given more chores to do, or expected to provide emotional support to the parents.”

“That can be really troubling for them. Or it can be empowering, but difficult.”

Predictors: How Age Of The Child And Other Factors Impact The Trauma

A handful of studies have tried to pinpoint key factors that influence how well parents adjust in the aftermath of losing a child. One 2005 study found that the child’s age, the cause of death, and the number of remaining children was strongly linked to the levels of grief displayed by parents, while depression was linked to gender, religious affiliation, and whether the bereaved sought professional help. Subsequent studies have uncovered other predictors of lower grief responses: a strong sense of purpose in life and having had the opportunity to say goodbye.

“It depends on the psychological makeup of the parent, whether they have a history of mental illness, what coping skills and what social supports they have,” Saltz says. Outside factors can play a role, too. Suicide is often more difficult but a terminal disease can present recurring traumas over a long period of time. Saltz also suspects that gender may be part of the puzzle. “This will undoubtedly shift, but historically mothers have been the primary caretakers and more likely to have their identities wrapped up in being mothers,” he explains, adding that this may result in stronger responses among women who lose their children

One of the most salient predictors of trauma is the age of the child. Miscarriages and stillbirths are devastating, and made worse by the fact that the loss is often diminished by public perception that a fetus is not a fully-formed child. But “is it as devastating as the death of a child who has been alive for many years? Not to diminish this experience, but I think not,” Carr says.

Once a child is born, however, the script flips. Older adults who outlive their children generally have an easier time coping than parents who lose very young children. “The age of the child is really important, because it speaks to promise,” Carr says. When a young child dies, that promise dies with them: “the graduation, the grandbabies, the marriages—that’s lost, too.”

Nonetheless, even older adults may suffer intensely after the death of an adult son or daughter. “You can meet someone who is 75 who loses a 50-year-old child, and it’s still devastating,” Carr says. “There’s this belief in the natural order. A parent should die first. So even though age matters, older parents still are quite bereft. They’re just losing less of that long-term promise.”

Coping: How to Provide and Seek Comfort

After a child dies, those who are left behind may experience depression, biological and neurological changes, and a destabilization of the family and marriage. “If you’re in this situation, and it is impairing your ability to function, you need to seek treatment,” Saltz stresses. “Parents who fall into major depression will be unable to parent other children, or be in a marriage. Psychotherapy can be helpful and medication can too, at least in the short run.”

The best thing that friends and loved ones of bereaved parents can do is be present, available, and supportive. If the bereaved speaks of suicide, take them to an emergency room; if the situation is less dire, but the grief does not seem to abate over time, help them make an appointment to speak with a professional or attend a self-help group with other bereaved parents. Because even the most sensitive souls are seldom equipped to help parents cope with a loss of this magnitude—and no matter how hard you try, you’re unlikely to really understand.

That’s where a self-help group’s value really shines through. “The one thing that people who have lost a child hate hearing from others is ‘I know what you’re going through,’” Carr says. “They cannot possibly know.”

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I’m 33, Healthy, and Planning My Own Funeral

By Susie Bearne

I was 33 when I decided to plan my funeral. I was healthy, and I would describe myself as a glass-half-full kind of person. In other words, I’m not morbid, and I don’t have a death wish.

But over the years, the thought of my own funeral constantly popped up in my mind. Who would turn up? What music would be playing? And — with a good degree of narcissism — which ex-lover overwhelmed with grief would be lingering in the back pews? While friends planned their weddings, I had a different milestone that I wanted to plan for: the end of my life.

The more I started to think about the funeral, the more I wondered how my funeral might play out outside of my daydreams, given I wouldn’t be there to orchestrate it. If I were to die, how would my family know whom to invite? And as an eco-vegetarian, would my funeral reflect the principles I’d lived by? It dawned on me that my final soiree might actually be my own worst kind of party, with me wanting to jump out of the coffin and scream, “FFS, James Blunt?” as “You’re Beautiful” played softly in the background and everyone quietly wept into plates of frozen, beige party food.

One day, I read about Louise Winter – an editor turned funeral planner – online. According to her website, Winter founded Poetic Endings, a business dedicated to creating bespoke funerals, ensuring that send-offs could be stylish, meaningful and unique. I was intrigued. Could she help me plot out my big day?

I met Louise at The House of Saint Barnabas in Soho in London. Over a pot of green tea, she gently asked about my experience attending funerals. The funerals I’d attended were quite traditional and stuffy — black limousines, black clothes, and mostly somber, never really reflecting the spirit of the person who’d died.

Then, Winter quizzed me about every aspect of my future funeral.  Would I like to be buried or cremated? What I would like to be dressed in? Did I want to be embalmed? She explained that funerals didn’t always have to be held in a church, as I’d previously assumed. She also enlightened me on things I never knew, including the fact that I didn’t have to have my funeral in a church, and that it’s actually more environmentally-friendly to have a woodland burial than a cremation.

The cost of Louise’s services came to just under $400. For that, I got three hours of what is essentially event planning, guided by an industry expert. Following the one-to-one, Louise sent me a document which outlined the practical arrangements of my funeral such as keeping my body in a natural state and making sure people wear whatever clothes they want — color is encouraged. The document, which Louise sent to me, is a loose plan of how I’d like my big day to pan out. It can be updated by me at any time, and I’m not legally bound to any of it.

I decided on a candle-lit service in a historical house in London, where friends and family will be welcomed with glasses of Champagne for during the service and be encouraged to stand up and share anecdotes (note to friends: be funny). The after party is set to be in the same venue or a nearby pub, with guests encouraged to bring a vegetarian dish for a huge buffet. Other requirements include no embalming, a bamboo coffin, and a woodland burial near my parents’ home, complete with a tree planted nearby.

I get that it all sounds a little bit…intense. However, I’m not the only one preparing their funeral.

Over the past decade, there’s also been increased interest in dedicated spaces where people can discuss death and grief. For example, more than seven thousand Death Cafes, where strangers are encouraged to talk about death over tea and cake have been held across 68 countries since the social network was founded in 2011.

“When it comes to end-of-life planning and our relationship to death and dying, avoidance doesn’t work; it doesn’t prevent a person from dying, but it may prevent them from dying a good death,” says Lennon Flowers, co-founder and executive director of The Dinner Party, which encourages those who experienced loss to join others for a meal.

The rising societal urge to speak up about death and celebrate life has led to Reimagine, a non-profit which hosts events in San Francisco and New York across spaces ranging from hospitals to comedy clubs. “By bringing death out of the shadows and repurposing public spaces where all types of people are invited not just to talk about death we’ve seen a process of personal and community-wide transformation emerge,” says founder and executive director Brad Wolfe.

Amy Cunningham, owner of Brooklyn-based funeral directors Fitting Tribute Services, believes that millennials are far more aware of their own mortality — perhaps because of the current political climate and the rise of mass violence. “Death can strike at any moment,” she says. “This causes younger people to contemplate it and even get creative with what’s inevitable – as sad as that is. Young people want to break more of the old funeral rules and customs and make the funeral work for them.”

Danielle Ripley-Burgess, 35, a freelance communications consultant living in Kansas City fine-tuned her funeral plans on her own as part of her 2019 New Year’s resolutions. “I was diagnosed with colon cancer 18 years ago and I’ve thought about death a lot ever since,” she says. “Attending funeral services for friends, family and fellow cancer fighters has given me a lot of ideas.”

She describes her funeral as a “pop-music filled, colorful celebration of life full of faith-based Bible verses and songs that allude to the hope I find in death” – and with a taco bar serving up food. “When we pass away, our loved ones will be those suffering the most, yet they’ll also be tasked with handling our affairs. Making funeral plans is a small way to lighten their load,” says Ripley-Burgess.

It was following the death of her mother that motivated Alica Forneret to consider her own funeral. “I realized that there’s a lot of damn work involved with planning a funeral, especially when you’re grieving,” says Forneret, 30, from California. “I eventually realized that it was super important for me to start thinking and talking about this stuff with my family and my fiancée, because I didn’t want to put any of them in a situation where they weren’t prepared to execute on what I want done when I die.”

Forneret, a writer who now lives in Vancouver, says her funeral plans so far includes “good food” because “grieving is hard work and our bodies need to be nourished during those times” and ensuring someone tells jokes. “In short, I want my funeral to be positive and sad, to help people connect in their lives that’ll continue after I’m dead.”

“We are all going to die,” Forneret continues. “Preparing your family and friends in advance is really, really important. Then they can just ride the waves of grief without having to pick out fillings for the tiny sandwiches that’ll be served at your wake or what celebrant is going to MC your funeral.”

As for me, my environmentally-friendly and simple but stylish funeral looks set to be a beautiful and meaningful day, reflective of who I was — or rather, am. Knowing that my grieving family, doesn’t need to frantically worry about what songs I would have wanted to play, who to invite or if I wanted to be cremated means I leave knowing there’s one less headache for them. But one thing’s for sure, if it turns out to be quite the party and I’m in the heavens looking down, I’ll be absolutely gutted that I can’t be there.

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