How to Grieve for Online Friends You Had Never Met in Person

We often use technology to form meaningful relationships with virtual strangers. But what happens when the person on the other side of the screen dies?

By Cindy Lamothe

Last November, Kristi Pahr felt both shock and denial after learning that her online friend of over four years, Amy, had died suddenly. She says she still cries remembering those initial days of grief. Amy, she said, “was a better, more ‘real’ friend to me than most people I know in person.”

Ms. Pahr, 41, a freelance writer from South Carolina, first met Amy through mutual friends in an online Star Wars game back in 2013. She fondly recalls a similar “geekiness” and love of fantasy novels quickly bonded the two. “We chatted every day, shared pictures of our kids,” complained about their spouses. And though she and Amy knew each other only virtually, their daily texts evolved into years of mutual support and understanding. “She encouraged me to start submitting my writing for publication,” Ms. Pahr said, “and was one of the only people I ever let read the things I wrote before I was published.”

Today around 70 percent of Americans connect over social media, according to the Pew Research Center. Although many of us are talking to people we know in real life, it’s easy to form connections with people we have never met in person.

More than ever before, we are using our smartphones and technology to form meaningful relationships with virtual strangers, both in romance and friendship; we celebrate one another’s successes, share our individual struggles, and despite geographical limitations, these bonds often span years. But what happens when the person on the other side of the screen dies?

Finding out about her friend’s death last fall was devastating, said Ms. Pahr, who recalls scrolling through her newsfeed one day and stumbling upon a post from someone outside of her contacts offering condolences to Amy’s family. “I was dumbstruck and thought it must’ve been a mistake.”

She remembers frantically messaging Amy soon after, and waiting for the “read” indicator to pop up next to the message — only to have it remain unanswered.

“Days passed and I still waited,” she said. “I kept expecting to find out it was a different person, or that someone had been wrong.” Not knowing what else to do, she eventually reached out to Amy’s husband by messenger, who confirmed her friend had passed away. “I was a disaster for a while, randomly crying throughout the day.”

Our ideas about which relationships are “real” have not caught up with the ways we actually live and connect, said Megan Devine, a Portland-based psychotherapist and author of “It’s OK That You’re Not OK.” She’s adamant that this deep sense of loss isn’t limited to in-person friendships.

One of the difficulties Ms. Pahr faced after Amy’s death was a lack of empathy from others. “Even well-meaning and compassionate people don’t place the same weight on your grief,” she noted, the way they would if you lost a friend you knew in person.

“Grief is often unacknowledged in western culture, no matter what the cause,” Ms. Devine said. In fact, the societal norms around grieving cyber relationships is still relatively new, and to this day, remains largely unexplored. “When you add in the non-corporeal relationship, the pain can be even more invisible.”

This can often lead people to experience what psychologists call “disenfranchised grief,” a term coined in 1985 by Dr. Kenneth J. Doka to describe a loss that isn’t acknowledged by others. As he explained in his book “Disenfranchised Grief: Recognizing Hidden Sorrow,” these losses can often deprive a person of the catharsis found in shared bereavement. “You don’t really have a socially sanctioned right to grieve,” said Dr. Doka, who teaches gerontology at the College of New Rochelle in New York. “But these relationships can be very profound.”

Understanding the unique challenges of cybergrief can validate how a person may be feeling. Here are five ways of coping with the loss of an online friend.

Don’t Dismiss It

“In many ways, the grief is twofold,” said Dr. Kathleen R. Gilbert, author of “Dying, Death, and Grief in an Online Universe,” because a person isn’t only grieving their loss, they’re also grieving for the loss of support they had hoped they would receive from other people. Often times, Ms. Devine explained, it’s our in-person friends or family who can be confused or dismissive of our grief. But, she emphasizes, the first step forward is to acknowledge that all relationships are important, whether we see someone physically or not.

Claim Your Grief

One of the things the internet does is expand our awareness of the world beyond the corporeal one we know. Social media allows us to develop a construct of another person, their hopes and dreams — and similarly, share our own. Many of us have spent years cultivating relationships based on words and images.

This has been true for Ms. Pahr: “Friendships and what it means to be friends has changed so much in the last 20 years,” she said. “The fact that you can be BFFs with someone without ever hearing their voice or touching their skin is mind-blowing to some people.”

Cyberloss isn’t any less genuine or deeply significant simply because the interactions took place online. As Ms. Devine explains, every grief is valid, and just because you aren’t in the same room, or connecting over tea in your home city, doesn’t mean you don’t rely on the person, or count them among your inner circle. “The only person who gets to decide what grief looks like is the person experiencing it.”

Gently Reach Out

Whether or not we should contact the person’s family with our condolences can be tricky. On the one hand, we want to express how much they meant to us, but we’re also wary of intruding.

Ms. Devine encourages gently reaching out to the family or friends of the person with a quick message or email sharing a favorite memory, and letting them know we join them in wishing things were different. Family members may not recognize your message in the initial days and weeks after the death, “but many people take great comfort in learning how vastly loved their person is.”

When it comes to attending the funeral, she cautioned that there are boundaries to keep in mind. While everyone has a right to grieve, if we aren’t in the epicenter of the loss — as in immediate relatives and loved ones — we might feel less recognized at in-person events like memorials or funerals. Even so, attending them shouldn’t be ruled out altogether. Go if it feels right, Ms. Devine suggested, but do not shove your way into the inner circle. “Your relationship is valid, but it’s different from the partner, parent, child, sibling, etc.,” she said.

Create a Ritual

The hardest task of mourning is to accept the reality of the loss, said Julia Samuel, a London-based psychotherapist and author of “Grief Works: Stories of Life, Death, and Surviving.” If someone is an online friend, she explained, there may be less concrete experiences or objects on which to focus one’s grief, which could make it hard to really believe the person has died. She advises the importance of creating a ritual that represents an ending, whether by lighting a candle and saying a prayer or poem, or going to a place of worship to do something similar. Dr. Gilbert likens this to a ritual of transformation: “The person is no longer available to me, but I can still have in my heart a connection with them.”

Find Your People

While the pain of grief may lessen over time, Dr. Doka noted that we never really get over a loss, we learn to live with it. That includes cybergrief. “Even years later, people can have surges of grief,” he said. Though it will feel difficult at times, finding support through a trusted counselor or online bereavement community can be an invaluable way of receiving the validation we need.

Of course, creating relationships — online and off — that are based on care, support, kindness and empathy are your best resource, adds Ms. Devine. Investing in all of those friendships is your best insurance, “that way, no matter what happens, you have a net to surround and support you.” As Ms. Samuel put it, “What we need most when someone we love has died is the love of others.”

Complete Article ↪HERE↩!

October 23, 2018October 23, 2018

‘I’m a friend at the end – why I became a death doula’

When a loved one dies, it is often medical staff, a hospice and an undertaker who deal with the final moments.

But families can now bring them back into the home, engaging an end-of-life doula to take care of the last wishes and arrangements for their loved ones.

Hilary Pepiette, a solicitor, is one of Scotland’s first end-of-life doulas.

She thinks there is a great need for her role as a “friend at the end”.

Hilary told BBC Radio Scotland’s Kaye Adams programme: “An end of life doula is someone who supports and walks alongside a dying person, the family and people close to that person, through the dying process, through the death and sometimes after that.

“The doula is your consistent flexible presence to fill in the gaps and give support emotionally, spiritually and practically in whatever way it is needed for each individual person and your family.”

Hilary believes we have handed over control to the professionals.

She said: “I have seen family members who have died and I think there is a feeling for me that I would love to do more and make sure that people can have the best possible death they can have, and to celebrate life.

“It is about making sure people live their life to the absolute fullest potential as long as they possibly can, and celebrate that, and then help them have the death that they want to have, give them come control over that.

“My mum died at home and while we did the best we could and it was a good death.”

Death is a taboo

But she added: “I wish I knew then what I do now about what was going on for her at that time.

“It’s only in the past 100 years or so that people have stopped caring for their dying family members at home and it all became about hospitals and the medical profession.

“Death has become a taboo and something that people have stopped talking about. But the more we are open about it the better. Being with someone and having those final conversations is so rewarding.”

Hilary thinks people can talk about their end of life wishes more easily with someone who is not family

As a solicitor in Edinburgh, Hilary processed wills and personal business. She decided to take her end-of-life services one step further.

She said: “It felt natural. I have been a private client solicitor for more than 20 years, and through that I have worked with a lot of people planning wills, powers of attorney and advanced medical directives to help them think about and plan for the end of their life.

“It seemed like a natural progression to me to take that one step further and think about what happens after the legal documents have been put in place.”

Hilary’s firm BTO, is the first to offer an end-of-life doula as part of its services.

What does an end-of-life doula do?

A doula will talk and listen to the patient’s wishes and hopes for the way they will die

According to Hilary: “I do things from washing dishes or making their dinner or cutting someone’s nails or feeding them at the end of their life. Also providing the personal care that might be provided in a hospice.

“Also talking. There is a big role for conversation here where it can be really hard within a family to have the difficult conversations about what you want the very end of your life to be like, where do you want to be when you die, who do you want to be there. Do you want music playing?

“It is establishing what the biggest hopes and fears are. What are you most afraid of? Is it pain or losing control of autonomy, of making decisions. Having those conversations is a big part a doula can play.

“Some people are never comfortable talking about it. But most people who are given that opportunity and a safe place to do that are happy to do that and have those conversations.”

Someone who agrees with Hilary is Prof Dame Sue Black, forensic anthropologist and vice chancellor for engagement at Lancaster University, wants death to be celebrated more.

She told Kaye Adams: “It is an inevitability, it is going to happen. What we can’t control is how it happens.

“In the past that would have often been done by family. I think we have become scared of death, we don’t want to admit it exists.”

Prof Black was awarded a Damehood in 2016

Prof Black thinks people have been conditioned to believe in a certain way of doing things.

She said: “People tend to accept there are rules we have to abide by but generally there aren’t. It’s important those left behind feel they have the autonomy to respect the person they have lost in a way that helps them with their grief.

“We think a funeral has to be very specific in that it has to have hymns and speaking, and it doesn’t. We need to have a confidence that those who are left behind have control over the celebration of the person who has been lost.”

She also thinks people should not be afraid of the last moments and to make the most of them.

She said: “I think we forget sometimes when patients are advancing towards the end of life that we think they are not listening and don’t communicate.

“There is some research that suggests the last sense to go may well be hearing so that’s the time we need to tell them how much we love them, how much we care, what a difference they’ve made.

“One of the last things we can do is communicate.”

Complete Article ↪HERE↩!

October 22, 2018October 22, 2018

The five stages of grief don’t come in fixed steps

– everyone feels differently

By Nick Haslam

Grief can seem desolate for those in the thick of it who often feel unable to imagine a way out of their suffering. But, as time passes, the pain usually dampens or becomes more fleeting.

Understanding the normal trajectory of grief matters for the person experiencing the grief and those treating them. Attempts to provide a map of the bereavement process have typically proposed a sequence of stages. The “five stages” model is the best known, with the stages being denial, anger, bargaining, depression and acceptance.

While there is some evidence for these stages, the experience of grief is highly individualised and not well captured by their fixed sequence. Some of the five stages may be absent, their order may be jumbled, certain experiences may rise to prominence more than once and the progression of stages may stall. The age of the bereaved person and the cause of death may also shape the grief process.

Stages of grief

The first major attempt to outline the stages of grief was made by British psychiatrist John Bowlby, father of attachment theory, an influential account of how infants and children form close bonds to their care-givers. Bowlby and his colleague Colin Parkes proposed four stages of grieving.

The first is of numbness and shock, when the loss is not accepted or seen as not real. The second stage of yearning and searching is marked by a sense of emptiness. The mourner is preoccupied with the person who has been lost, seeking reminders and reliving memories.

In the third stage, despair and disorganisation set in. This is a sense of hopelessness and sometimes anger where the bereaved person may withdraw into depression. Finally, in the re-organisation and recovery stage, hope rekindles and there is a gradual return to the rhythms of daily life.

Bowlby and Parkes’s model, first proposed in the early 1960s, may have been the first. However, it’s Swiss-American psychiatrist Elisabeth Kübler-Ross’s model coined in 1969 that has become the most widely known. Her five stages of grief – originally developed to map patient responses to terminal illness – have become famous. They have been applied not only to responses to death but also to a variety of other losses.

Kübler-Ross’s first stage, denial, resembles what Bowlby and Parkes labelled numbness and shock, but her second, anger, departs from their scheme. The affected person demands to understand why the loss or illness has taken place, and why it has happened to them. In the third stage, bargaining, the person may be consumed with “if only”, guiltily wishing they could go back in time and undo whatever may have led to the illness, or death.

Stages four and five involve depression and acceptance. Despair and withdrawal gradually give way to a sense of fully acknowledging and making peace with the loss.

Evidence for the five stages

Kübler-Ross’s stages emerged from her clinical work with dying patients rather than systematic research. Empirical support for the existence of the proposed sequence of stages has been scant but intriguing.

One study followed 233 older adults over a 24-month period after the death of a loved one from natural causes. It assessed them on experiences associated with a modified version of Kübler-Ross’s stages. In accord with her theory, each of the five experiences peaked in the predicted order.

Disbelief was highest immediately after the loss and declined gradually thereafter. Yearning, anger and depression peaked at four, five and six months respectively before declining. Acceptance of the loss rose steadily over the two-year period.

Seeking reminders and reliving memories are often part of the grieving process

Problems with the stage model

Although the sequence of peaks matched Kübler-Ross’s model, some aspects of this research also challenged it.

First, although disbelief was at its highest immediately after the loss, it was always less prominent than acceptance. Acceptance is not a late stage of resolution for people who are grieving, but an experience that prevails from the start and continues to grow.

Second, yearning was the most prominent negative experience, despite being omitted from the most well-known version of Kübler-Ross’s five stages. This points to the limitations of framing grief in the clinical terms of depression, which study participants experienced less frequently than longing.

But the study’s findings can’t necessarily be generalised as it looked only at older adults and natural causes of death. Another major study found the typical pattern of grieving among young adults was substantially different.

Yearning peaked before disbelief, and depression remained constant without resolving over two years. In addition, yearning, anger and disbelief returned with a second peak near the two-year mark, when acceptance also declined.

Moreover, young adults whose loved ones died by violent causes differed from the typical pattern. For them, disbelief dominated their first months, and depression initially declined but then rose again as the second anniversary of the death approached.

The way a person has died may shape the process of grief for their loved ones.

All these findings represent the average responses of a sample rather than the trajectories of individual participants. Even if the Kübler-Ross’s stages partially reflect the statistical tendencies of the whole sample, they might fail to capture how individuals’ experiences of grief unfold.

That is the conclusion of a study that followed 205 adults over an 18-month period following the loss of a spouse. These adults had been interviewed for a related study prior to the loss.

The researchers found evidence of five distinct trajectories, with some people being depressed before the loss, and recovering afterwards. Some fell into a long-lasting depression, while others were fairly resilient and had experienced low levels of depression throughout.

States of grief

Kübler-Ross came to acknowledge the reality that her stages compose an appealing narrative of recovery rather than an accurate sequencing of grief. Experts now place less emphasis on her stages as a series of steps on the bereavement journey, much as they have tended to lose faith in other stage theories of human behaviour.

For all its limitations, Kübler-Ross’s analysis still has value. The supposed stages of grief may be better understood as states of grief: recognisable experiences that rise to the surface in distinctive ways in each person’s sorrowful passage through loss.

Complete Article ↪HERE↩!

October 21, 2018October 21, 2018

The Four Words Nobody Likes to Hear

You’re Going to Die

By Emma Silvers

About two months ago, seated on a small airplane that was descending through a lightning storm on its way to land in Florence, Italy, I was 90 percent certain I was going to die.

My terror only lasted about 10 minutes—from the moment I saw the first flash in the dark outside the tiny window, through a half-dozen weightless-feeling, heart-stopping lurches, until the wheels touched down on the runway.

Which is to say, it was nothing compared to what the residents of Hawaii felt earlier this year when one click of the wrong button at a local government office sent warning of an imminent ballistic missile in an all-caps text message to everyone within state limits.

The mistake went uncorrected for 38 minutes—minutes in which, as a close friend who happened to be there for a wedding later told me, people did what anyone would do: panic and try to take shelter, yes, but also attempt to make peace with the inconceivable notion that there, on a previously unremarkable Saturday in January, they were about to die. Unable to assess the legitimacy of the threat, my friend called her parents and told them she loved them, then she and a few other wedding attendees headed for the beach. At the very least, they decided, they would die somewhere beautiful.

I can’t be alone in hitting a wall of cognitive dissonance when I try to think about death: it’s universal, an equalizer, one of the few absolute inevitabilities about the experience of being human (along with taxes, har har). And yet it’s also so personal, and unknowable: especially for those of us who don’t practice a religion with a sure-footed concept of the afterlife, what actually happens when we leave this mortal coil is the ultimate in unavoidable question marks. All of which makes it fantastically appealing to try to avoid the topic entirely—particularly if you live somewhere, like, say, America, that worships youth and the young.

But if the uptick in death-themed workshops and events geared toward young people is any indication, avoiding the topic of death is no longer working for a vast number of people.

“It’s a really a whole movement we’re seeing, in which people are asking different questions, having new conversations, saying they’re not satisfied with how death has been treated in our culture—which is, of course, to push it aside until you can’t anymore,” says Chelsea Coleman, a singer-songwriter and co-host of You’re Going to Die, an ongoing performance series in which participants are invited to share stories and songs about grief and loss. Coleman hosts the series’ first Oakland event this Wednesday, Sept. 26, at the Starline Social Club.

Founded in San Francisco in March 2009 by the writer Ned Buskirk, “YG2D” began as a monthly community open mic at the intimate, now-defunct venue Viracocha; it didn’t take long for the event to start regularly selling out. Buskirk soon restructured the night to highlight featured musicians at each event, eventually asking Coleman to join him as co-host.

Ned Buskirk founded You’re Going To Die in 2009.

Coleman attended her first event in 2012, shortly after the death of her grandfather, with whom she was very close. “I was with him when he died, and I wrote songs about it, so I was looking for an outlet to perform some heavy stuff,” says Coleman. “Often when you play at a bar, it’s like—sure, you can play songs about heartbreak, but ‘Here’s a song about my grandpa dying’ is really not the vibe most places.”

She was hooked after one show. “It was such a powerful space,” says Coleman. “Hearing other people speak and perform is always moving, but I also felt like what I was offering had more power there. In the past I had sometimes felt like what I was doing was a burden.”

“But people show up [at YG2D] because they want to have an emotional experience,” she says. “That changes everything.”

A selection from the You’re Going To Die Instagram feed, which offers regular reminders of the inevitable.

You’re Going To Die became a registered nonprofit in 2017. The organization has expanded swiftly in the last two years, forging new partnerships with prisons—including workshops and shows at San Quentin—and with hospice programs, in which volunteers visit with people who are dying to hear stories, and to write or play music with them. The events are spreading geographically as well, with workshops or shows planned for San Diego, Ohio and New York in the coming months.

In doing so, the nonprofit joins organizations like The Dinner Party, a grief support network for 20- and 30-somethings that began as a series of informal potlucks in LA; the network now includes meetups in the Bay Area, Washington, D.C. and New York. Death Salon, meanwhile, hosts pop-up events of academic discussion and performance organized by a group of medical historians, artists and funeral industry professionals who’ve positioned themselves at the forefront of the Death Positive Movement.

It’s tough, as an American, not to wonder if there’s some correlation between the growing call for such conversations and the events of the past two years—when macabre jokes about our president’s access to nuclear buttons have become part of daily life: one part gallows humor, two parts very real fear.

But for a vast number of Americans, of course, the reality of death is perhaps no closer than it ever felt before: black men and women contend with the reality that they might be killed every time they step out the door, for actions as simple as walking, driving or taking BART. When a former coworker of mine, an activist and health care worker who was also a trans woman, died earlier this year, I felt (along with sadness for her family and close friends) a small sting of resignation: the numbers don’t lie.

Coleman has a sense, however, that those not previously accustomed to considering death may have been moved in that direction by the “heightened” state of U.S. politics since 2016.

“I think a lot of people who have had the privilege of being in denial for a long time are starting to ask questions,” she says, as I flash on my brief lightning storm-induced terror. “A lot of communities haven’t had that privilege.”

Regardless of the timing, “I think things feel heavy right now for pretty much everyone, and it’s very clear to me that people are hungry for these kinds of conversations,” says Coleman, recalling the first YG2D event she hosted solo, without Buskirk. “I was nervous people weren’t going to want to talk, but from the moment we started, everyone wanted to tell stories.”

Oh, and keep that in mind if you’re heading to your first YG2D, as well. Coleman says some of the most powerful performances come from people who weren’t planning on performing. While the event has morphed over the years, the open-mic portion still makes up its bones. Audience members who’ve never sung or told stories publicly before quite frequently take the stage.

In other words, there’s perhaps something universal happening there as well. What would I do if I had 38 minutes to live? For a topic so commonplace, so obvious and so inevitable, people surprise themselves all the damn time.

Complete Article ↪HERE↩!

October 20, 2018October 19, 2018

Death Is Not An Emergency: How Recompose Is Redesigning The End of Life

Katrina Spade envisions more options for the end of life that draw on nature as a model. Spade was named a 2018 Ashoka Fellow for her groundbreaking work.

Ashoka Contributor

Katrina Spade wants to transform the U.S. funeral industry, making way for many more options for those facing death and for their families. She founded Recompose in 2017 to champion a dramatically new approach that reconnects death to natural cycles of life and engages people through meaningful participation. Ashoka’s Michael Zakaras caught up with Spade to learn more.

Michael Zakaras: What inspired your interest in the rituals and practices around death?

Katrina Spade: I had a moment around age 30 when I realized I was mortal, and I became curious about what would happen to my physical body when I died. Because my family is not religious and most of my friends aren’t either, I thought, what will they do? And I discovered that there are really just two options in the U.S.: cremation and conventional burial. Both practices poison the planet — this struck me as the wrong punctuation for lives lived in harmony with nature.

Zakaras: Why do we have just these two options?

Spade: Much of it is convention, it’s just the way things have been done. Take modern embalming. Many people think of it as a centuries-old tradition — but it became popular in the U.S. only during the Civil War. A couple of enterprising young people invented and marketed it to soldiers on the battlefield as a way to get their bodies home to their families — for advance payment. They used arsenic instead of formaldehyde back then. Today’s funeral practices, and many of our laws, are based on the dual practices of selling caskets and embalming bodies from 150 years ago.

Zakaras: How big is the funeral industry today?

Spade: About $20 billion dollars, and it’s an interesting industry, with many funeral homes passed down generation to generation and a few large corporations that own a lot of funeral homes. One of the things that’s so interesting is the idea that every person can “own” a piece of land for eternity, in the form of a cemetery plot. This is not a sustainable model, especially for cities with space constraints.

Zakaras: That’s a good point. How much land would you need to bury everyone in, say, New York City?

Spade: We’d need over 200 million square feet of land, or 7.5 square miles! And besides the land use, cemeteries are filled with metal, wood, concrete, and embalming fluid, a known carcinogen.

Many people consider cremation to be a more sustainable choice, and its popularity is rising: by 2035 an estimated 80% of Americans will be cremated. But actually, cremation is an energy-intensive process that releases greenhouse gases and particulates, emitting more than 600 million lbs of CO2 annually.

Zakaras: So what’s the alternative?

Spade: With Recompose, we asked ourselves how we could use nature — which has totally perfected the life/death cycle — as a model for human death care. We developed a way to transform bodies into soil, so that with our last gesture we can give back to the earth and reconnect with the natural cycles. We’re also aiming to provide ritual, to help people have a more direct and conscious experience around this really important event. As hard as it can be, the end of one’s life is a profound moment — for ourselves and for the friends and families we leave behind.

Zakaras: If you are successful, what will look different in 10 years?

Spade: I’m hopeful that we will have many options for the end of life — from hospice care all the way through disposition. It won’t be the odd family who says, “Maybe we should have a home funeral” — it’ll be every family that says, “Okay, how are we approaching this? What feels right to us?” And it will be normal to ask: “What do I want my end of life to look like? What will happen to my body? Where do I want to be when I die?” These are things that should be up to us, but we’ve never really felt that we had the agency or the cultural support to decide them.

The funeral industry would like us to think that it’s difficult or impossible for us to care for our own after a death, but humans have been doing that for millennia. There are a lot of reasons to take back some of that work, the work of caring for the dead, because there’s so much beauty inherent in it and it’s such a personal thing.

Zakaras: Why is this a particularly important moment for this work?

Spade: There’s a growing realization of climate change, coupled with this incredible cohort of baby boomers — 10,000 Americans turn 65 every day — who are approaching the end of their life or seeing someone go through death and thinking, “Is this really the best we can do?” This is a generation that’s really good at saying “Wait a minute, we can do better than this.”

Zakaras: Do you ever get tired of talking about death?

Spade: I never do! We have such a long way to go, but a new relationship with death is totally possible. One of my favorite sayings is “Death is not an emergency.” This is a wonderful reminder that the very first thing we should do when someone dies is pause and take a deep breath and just be in the moment.

October 19, 2018October 19, 2018

14 Death Festivals Around the World

By Lauren Cocking

Mexico isn’t the only country which sets a date with the dead.

Around the world, different countries, cultures, and religions have unique relationships with their dead. And yet, there are plenty of festivals of the dead—which take place over the course of days, or even months—that share spookily similar rituals. Think: offering food, cleaning tombstones, and thanking deceased loved ones for their care and guidance. Don’t let shared origin stories diminish the importance and significance of each one though—they’re all as fascinating as the last.

Hungry Ghost Festival

WHERE: China

China’s Hungry Ghost Festival—which has the best name I think I’ve ever heard—is actually a Hungry Ghost Month. In fact, only the final day of the month, when the boundary between life and death is most blurred, is known as the Hungry Ghost Festival, and Chinese Taoists and Buddhists mark the solemn occasion by burning a lot of paper. Not only do they burn paper offerings—which signify the things living relatives wish to send to their deceased loved ones in the afterlife—they also release paper lanterns to help guide the spirits home.

Obon Festival

WHERE: Japan

The Obon (or just Bon) Festival is another Buddhist affair, and the Japanese equivalent of China’s Hungry Ghost celebrations (both take place on the fifteenth day of the seventh lunar month). However, the Japanese version is now usually celebrated on a fixed rather than fluctuating date, around mid-August. Depending where you are in Japan, you might see dances (like the Bon Odori), the release of floating lanterns, or bonfires marking the occasion, although visiting graveyards is a common countrywide ritual.

Chuseok

WHERE: North and South Korea

Unlike China and Japan, the Koreas honor their ancestors in the eighth lunar calendar month (roughly September/ October), in a celebration which also combines dance, food and general revelry over three days. The food, especially rice cakes called songpyeon, plays an important role, principally because thanks are also given to the deceased for their role in providing a good harvest. However, like other days of the dead around the world, graves are also cleaned and dances are also danced.

Samhain

WHERE: Celtic Peoples

Before Halloween (or All Hallows Eve) there was Samhain (or All Hallows), a Celtic tradition that admittedly has much in common with our present-day October 31 rituals. Take our fancy dress tendencies and giving of sweets for example. The day before Samhain, people thought that their ancestors returned from the afterlife to essentially press a giant reset button on the land and leave it empty just in time for winter. As a result, the night before (a.k.a. Halloween), they’d wear masks to blend in and leave food out for the returning souls. Sounds familiar, right?

Fiesta de las Ñatitas

WHERE: Bolivia

La Paz, Bolivia welcomes an unusual day of the dead ritual each November, as the Aymara people head to the central cemetery with their deceased loved ones’ skulls in tow. Displayed in boxes, and often adorned with flowers, the skulls are also given offerings (think: food and drink) in thanks for having watched out for their relatives from the realm of the dead over the course of the past year.

Gai Jatra

WHERE: Nepal

To catch a glimpse of the Nepalese Festival of the Cows (otherwise known as Gai Jatra), head to Kathmandu in August or September, where the eight-day affair is principally celebrated. Confused as to what a Festival of the Cows has to do with celebrating the dead? Cows are thought to help guide the deceased into the afterlife, so families with a recently departed loved one will guide a cow (or a boy dressed as a cow) through the streets to both honor and aid their deceased.

Qingming (a.k.a. Ancestors’ Day)

WHERE: China

Cleaning the tombs of the deceased forms a large part of China’s Ancestors’ or Tomb Sweeping Day, although consuming dumplings and flying kites are also important. Similarly, offering goods of value in the afterlife—such as tea and joss sticks—is also practiced on Qingming. It’s said that this memorial to the dead, which takes place in roughly mid-April, was established as a way to limit the previously overly-extravagant and all-too-regular ceremonies held in memory of the deceased.

Pchum Ben

WHERE: Cambodia

Pchum Ben, a 15-day-long ritual when the veil between living and dead realms is considered to be at its flimsiest, is celebrated countrywide in Cambodia. While the first 14 days, known as Kan Ben, are about remembrance, the fifteenth day—or, Pchum Ben Day—is when Cambodians gather en masse to celebrate. And, as with other festivals of the dead, food is offered to the souls of the departed, who it’s thought return to earth to both connect with their loved ones and atone for past sins.

Pitru Paksha

WHERE: Hindus around the world

Undefined by geographical bounds, Pitru Paksha is a Hindu festival which, like that of the Cambodian Pchum Ben, centers on praying and providing food for the deceased. However, Pitru Paksha lasts for 16, rather than 15 days, and those who take part apparently shouldn’t undertake new projects, remove hair, or eat garlic for the duration.

Radonitsa

WHERE: Russia, Belarus, and Ukraine

Radonitsa, the Russian Orthodox Church’s second-Tuesday-of-Easter memorial for the departed, stemmed out of a Slavic tradition which involved visiting graveyards and feasting with the dead. Nowadays, the rituals remain remarkably intact, as this joyful remembrance involves leaving Easter eggs on the tombstones of the deceased before dining beside them, as well as sometimes gifting presents to your in-laws.

Totensonntag

WHERE: Germany

For German Protestants, Totensonntag (a.k.a. Sunday of the Dead) is considered a day of remembrance, on which those who honor the occasion will typically pay a visit to the graves of their deceased loved ones. However, unlike some of the festivals of the dead mentioned so far, Totensonntag is a far more somber affair. In fact, it’s sometimes known as “Silent Day” and it’s actually forbidden to dance and play music in public in some parts.

Tiwah

WHERE: Indonesia

The beliefs of the Dayak Ngaju people of Central Kalimantan, Indonesia state that after death and the departure of a person’s soul, their body’s spirit remains on earth. In order to liberate that spirit and ensure they ascend to the highest level of heaven, it’s necessary to conduct a tiwah. Held anywhere from some months to years after a loved one is buried, the tiwah involves the exhumation and purification of bones and can be a prolonged event in which multiple families participate.

Thursday of the Dead

WHERE: The Levant

In the Levant—a historical geographic region which includes many modern day, Eastern Mediterranean countries—Thursday of the Dead (sometimes known as Thursday of Secrets, Eggs or Sweetness) brings together Christian and Muslim traditions to honor the souls of the deceased around the Easter period. Typically celebrated in the morning, sweets and breads are traditionally doled out to children and those in need.

Día de Muertos

WHERE: Mexico and wider Latin America

You can’t talk about global festivals of the dead without throwing in at least a few references to Mexico and wider Latin America’s Día de Muertos festivities. On November 1 (Día de los Angelitos) and 2 (Día de Muertos), people from across Mexico pay homage to and celebrate the lives of their deceased loved ones by building altars and displaying sugar skulls, amongst other things. In Guatemala, giant kites are flown, while in Ecuador, the Kichwa people memorialize their deceased loved ones by visiting, cleaning, and eating at their gravesides.

Complete Article ↪HERE↩!

October 18, 2018September 13, 2023

Author’s new book looks at dying at home

‘It’s my passion to demystify hospice’ — Karen J. Clayton

by Patricia Guthrie

With more Americans living longer and aging in place, more also want to die at home.

Few, however, actually do.

Karen Clayton of Oak Harbor believes more terminally-ill individuals and their caregivers might choose home end-of-life care if they knew more about the physical and emotional support provided by hospice services.

“It’s my passion to demystify hospice so patients and families will use this truly extraordinary care,” she said. “I believe most people think hospice is a really good thing—for someone else. They do not realize they can have six months of quality end-of-life care wherever they live.”

Clayton’s just-released book, Demystifying Hospice: Inside the Stories of Patients and Caregivers, is based on years of experience working as a social worker in public and private hospitals, a hospice, and with the American Cancer Society. She plans to discuss her book and the topic of hospice care at a series of presentations and workshops around Whidbey Island this fall.

Clayton describes herself as a hospice social worker, sociologist, author and a story catcher.

Studies have shown that approximately 80% of Americans would prefer to die at home, if possible. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home.

According to the National Hospice Foundation, many people at the end-of-life are being referred to hospice care too late or not at all.

Many Americans don’t realize hospice care is a benefit of Medicare, Medicaid, VA benefits, and many other insurance plans, Clayton said. Additionally, hospice organizations can help those with no insurance.

“Hospice offers at least six months of care for terminally ill patients and their caregivers,” she added. “So, it’s stunning that, in 2015, half of the U. S. hospice patients had this truly extraordinary care for 17.4 days or less and one-third for seven days or less.”

Home hospice services consist of a team of professionals who regularly visit patients at home and are available 24 hours a day. Nurses, social workers, chaplains and nurse aides comprise the main team and some services also provide massage therapists, even instrumentalists, such as harpists, to play soothing music.

Hospice services also supplies medication and delivers equipment, such as hospital beds, wheelchairs and personal hygiene items.

Clayton’s book doesn’t focus on medical problems but rather the emotional and practical help given by socials workers to patients, caregivers and families.

“The caregiver receives training and support from the team, and it is difficult,” Clayton said. “It helps to have someone to talk with about the types of feelings involved; fear, grief, anger, curiosity about how to help in the best way.”

She also provides caregiving tips and suggests ways to connect with people in their final days.

“It’s good when families spend time with photo albums, old family films, games, movies, playing checkers or chess, remembering the good times in their lives, the things they have contributed through their job or service,” Clayton said. “Quality of life can be maintained when patients are offered activities, food, family interactions within the limits they have.”

Clayton’s book describes the hope, healing and support that home hospice care offers.

Each story addresses some aspect of helping families through the caregiving and grieving process and it offers comfort and understanding to readers who may be going through similar experiences.

“These stories will lift your spirits and touch your heart,” Clayton said. “It’s a joyful thing to learn how to provide good physical and emotional care for the person you love.”

Karen Clayton will discuss hospice care and her book at the following free events open to the public:

Three Journeys: Writing, Caregiving, Publishing; 3 p.m., Thursday, Oct. 18, Friends of the Library, Oak Harbor Library

“Demystifying Hospice” workshop: 1:30 p.m. Monday, Oct. 22, Coupeville Library

“Demystifying Hospice” workshop: 2 p.m. Wednesday, Dec. 5, , Freeland Library

“Demystifying Hospice” workshop: 10 a.m., Saturday, Dec. 8, Langley Library

• More information HERE!

Complete Article ↪HERE↩!

Demystifying Hospice: Inside the Stories of Patients and Caregivers
Rowman & Littlefield, 2018 Hardcover, 2020 Paperback

Whidbey author, social worker and sociologist, Karen Clayton’s book is listed as one of the “20 Best Hospice Care Books” by Book Authority which creates lists of the most recommended books on business, technology and science. The book is in 719 libraries, several outside the US, according to WorldCat operated by OCLC (Online Community Library Center). Locally you can find it in the Anacortes, Burlington, Mt. Vernon libraries and the Sno-Isle Library System. Several independent bookstores in the NW carry the book and it’s available online.

“My purpose is to help folk–patients, family members, and medical personnel–understand the services provided by hospice and the value of seeking hospice care when the decision is made to do no more treatment for cure. About 50% of Medicare patients do use hospice; however, about 40% wait until the last 2-3 weeks when they could have this unique comfort care for 6 months!”
–Karen Clayton, social worker and sociologist