Category: Cultural Expressions

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So, you want to hire a death doula?

Three things to consider

By Amy Wright Glenn

It is estimated that 6 percent of American women now hire birth doulas for emotional, physical and even spiritual support during labor and delivery. Twenty years ago, when the birth and postpartum doula movement was in its nascent stage, this percentage was certainly much, much lower.

In fact, 20 years ago, the word “doula” itself evoked quizzical looks. Even 10 years ago, following my initial certification with DONA International, friends, family and colleagues would often inquire: “What’s a doula?” Today, the term has become a part of our common lexicon. Most Americans recognize its meaning: A birth doula is a professional trained in comfort measures, listening techniques and providing compassionate care to women as they labor to give birth.

But, what about death?

How many Americans have heard of “death doulas”?

Today, wise and creative cultural pioneers lead a burgeoning movement in applying key elements of the birth doula model to train people to companion each other in death. Given that our experience of death has become so institutionalized and medicalized, applying the doula model of care to death and dying represents a sane and needed grounding in the wisdom of compassion, companioning and proven comfort measures.

Henry Fersko-Weiss is such a pioneer. Author of “Caring for the Dying: The Doula Approach to a Meaningful Death,” Fersko-Weiss has trained more than 350 death doulas through the International End of Life Doula Association. Fersko-Weiss believes that the end-of-life doula movement will grow faster than the birth doula movement did because the birth doula movement “brought the word doula into American consciousness.”

As someone who holds space for both birth and death, I’m hopeful that Fersko-Weiss is right. My specialty is in working with bereaved parents who know the pain of miscarriage, stillbirth and/or infant death. I’ve witnessed firsthand that there is much wisdom to be gained by applying the doula approach of caregiving to the concluding threshold points of our earthly existence. Certified hospice and palliative nurse and end-of-life doula Deanna Cochran agrees. Cochran has been mentoring and training death doulas since 2010. She remembers her initial pull to death doula work after working for several years in acute care and oncology. She remembers how it became “overwhelmingly clear” that “so much needless suffering was going on, and I wanted to be a part of changing that.”

When our loved ones are dying, we certainly work diligently to end needless suffering. But much of human suffering is emotional and psychological. Physical pain can be alleviated through medicine, but what of the pain of grief? Just as more and more American women have turned to birth doulas to help buoy their courage and strength as they traverse the landscape of labor and delivery, more and more Americans – should they know death doulas exist – will turn to death doulas to companion them through the wilderness of loss.

So, what to look for when hiring a death doula? Consider these three simple points.

  1. Seek out someone who has experience and training. Seek out a certified death doula, if possible. A growing number of organizations offer quality end-of-life doula training. Inquire if a certified and/or trained doula works in your vicinity. If possible, interview more than one potential candidate to ascertain which doula will be the best match for your situation. Inquire about their training, past experience, philosophy in holding vigil and what specific comfort measures they can bring to both the dying and the bereaved.
  2. Seek online and/or phone support as needed. Trained death doulas may not live in your area, but in the age of Skype and FaceTime, one can still benefit from a virtual companion. While there is much to be said for face-to-face interaction and the healing power of comforting touch, it is better to have quality support than to go without care. If you are the primary caregiver for a dying relative or friend, reaching out to expand your own support network is especially a very good idea.
  3. Read and research about the doula approach to caring for the dying. It’s certainly possible to bring key aspects of doula caregiving into one’s personal experience with family and friends. Knowledge and insight gained can help you strengthen your confidence and expand your skill set as you offer your presence in vigil for the dying.

Each month, I receive emails from individuals interested in finding an end-of-life doula. “Can you help me find a death doula? My grandfather is dying.” Or “My mother is nearing death and I’m alone in caring for her, can you recommend an end-of-life doula who can support us?” Such requests carry the weight of a great deal of sadness. It’s helpful to remember that we don’t have to walk through the valley of bereavement alone. Whether our grieving is extremely complicated or pretty straightforward, it is real. It hurts. And death doulas are here to offer up their compassion and skill. They hold us as we hold our sorrow.

Complete Article HERE!

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‘Passing away’, ‘kicking the bucket’ and ‘pushing up daisies’: How we avoid talking about death

Knowing how to communicate about death gives us the language to discuss end-of-life topics.

By Deb Rawlings, Christine Sanderson, Deborah Parker, Jennifer Tieman and Lauren Miller-Lewis

[T]alking about death and dying is taboo in many parts of the world.

So it’s no wonder many people avoid talking about it. Or they struggle to find the right words.

Whereas once, we were more comfortable talking about death, now we have become creative in avoiding talking about it.

We resort to euphemisms (alternative words that are softer or less direct) to soften the blow.

For instance, we talk about people “passing” or “gone” rather than they’ve died or are dead, just two examples from a rich history and range of euphemisms we discovered in our research.

What we did and what we found

We ran an online course, open to anyone around the world, on death and dying.

The aim was to open conversations about the topic, and to promote understanding about death as a natural part of life.

Over two years, we asked 3,116 participants from 39 countries about how they talked about death and dying.

They told us of alternative words or phrases to describe death instead of the words “death” or “dead”.

They volunteered varied, often humorous alternatives such as: “wrong side of the grass”, “taking a dirt nap”, “worm food”, “cashed in their chips” and “staring at the lid”.

But the most widely used euphemism was “gone”. Variants of “passed” were also very popular, like “passed away”, “passed over” and “passed on”.

Some of the euphemisms we found for death and dying. The larger the print, the more common they were.

There were also historical phrases that still make sense today, such as: “shuffled off” or “shuffled off this mortal coil,” from Shakespeare’s Hamlet (published early 1600s); “six feet under” (from around 1665, referring to how deep plague victims needed to be buried); and “promoted to glory” (used by the Salvation Army since the 19th century).

One common Australianism was “carked it” (also spelled “karked it”), a phrase that confused participants from other countries.

Some participants said euphemisms were acceptable if it was culturally inappropriate to be more direct.

This was particularly so for Aboriginal and Torres Strait Islander participants, who preferred “finishing up” and “passed away”.

Other culturally specific euphemisms included: the UK’s “gone for a Burton” (used by the armed forces in World War II) and Cockney rhyming slang “brown bread” (rhymes with dead).

Participants from the US reported “crossed into Beulah land” (from the book The Pilgrim’s Progress) or “sleeping with the fishes” (from the movie The Godfather).

 

How and why do we use euphemisms?

People mainly said they used euphemisms because the words “dead” or “dying” could upset people or were too harsh.

Some participants said they had heard many euphemisms, but wouldn’t dream of using some, for instance “kicked the bucket”, for fear of causing offence.

Most participants said they speak openly about death and dying but could understand why others don’t.

Over two-thirds of participants were health professionals, and while many of them were comfortable talking in plain language, they often used the phrase “passed away” in some situations rather than “died”.

Many participants use euphemisms when others do, and are guided by them in conversation.

Is this a problem?

Does it really matter if people use such euphemisms? Not always.

But sometimes euphemisms can lead to misunderstandings and confusion. Think of the commonly used “gone”.

One participant talked of an aunt who was waiting to hear about the health of her husband.

The aunt received a phone call telling her that her husband had “gone” so she asked which nursing home he was transferred to.

The caller had the awkward task of clarifying her husband had died.

Then there’s the word “lost”. One participant received a phone call from a friend who had “lost” her mum:

I was confused and said, “Why? Where did she go? How can she be lost?

Other participants talked of receiving condolences such as “I’m sorry you have lost your son,” only to wonder whether they should feel careless in misplacing him.

Communicating about death and dying is important

Euphemisms have their place. But being able to talk openly (and clearly) about death and dying is important as it helps normalise death and avoids confusion.

If health professionals use euphemisms, they need to consider whether patients really understand what they’re trying to say.

And normalising death and dying (and communicating it) helps us prepare for the death of someone we love, or to find the right language to make the best choices for end-of-life care or for a funeral.

Complete Article HERE!

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Where Do I Go To Mourn?

By Ariele Mortkowitz

[T]he Jewish tradition is rich with mourning rituals. We’ve done it as a nation for millennia; mourning the loss of Jerusalem, lamenting the Holocaust, remembering the long lost days of the Holy Temple. As individuals, we do it with bagels and covered mirrors and week-long shiva visits. We can say Kaddish (the mourner’s prayer) for a year. There is plenty of space and opportunity to grieve.

And it’s a good thing. A great thing even. It’s supportive. It’s community showing up at times when someone might be at their lowest low. It’s not leaving people to manage their grief alone. It’s a built-in system of shoulders to cry on, arms to lean on, caretakers, yentas – all of them creating a space for you to mourn and pause before gathering strength to move forward.

But while we offer so much to mourn those who have passed, there is nothing available to support those mourning pregnancy loss. There are no rituals. No one brings bagels. No one even talks about it. Some rabbis will tell you that you are not even permitted to say Kaddish after a stillbirth. It’s like it never happened.

And there’s a logical reason for that. In times long ago, pregnancy loss was incredibly common. It was also often very public. It was rare to find a family that had not lost a child or infant in the course of their family-building. In fact, many parents lost more than one in their lifetimes. So if the custom would have been to stop everything to mourn, people would have been in states of mourning constantly. And one could say that therapeutic value of shiva/mourning rituals would be diluted. The rabbis, in their wisdom, thought it better to not make such a big deal of pregnancy loss – precisely because it was so common.

But what about today? 2017. When pregnancy loss is not something that happens as often in each family? And certainly not in the same public way it did in olden times? What do we do with these feelings of loss that can be so devastating – particularly in the midst of communities that value children so highly?

Where should a couple take their grief when they learn that they will not be able to be parents? How should a mother-to-be mourn the loss of a life that she cherished? What prayer should she say? There is no ritual. No one talks about it openly because of the attached shame and disappointment of not being a “fruit bearer.”

It’s rough. It’s lonely. And it is incredibly sad.

It is ironic that a faith community that is normally so very good at supporting individuals laden with grief, can fail so terribly at addressing this common and natural loss.

I know of more than a few synagogue regulars who stopped attending services and recuse themselves from the ebb and flow of Jewish communal life after a miscarriage or when they continue to fail to conceive. With no “official” way to mourn a pregnancy loss or a fertility struggle, it can be incredibly isolating and “othering” for couples — often pushing people away from their communities during the very time they need support most. They feel not understood, invalidated, wrong for being so heartbroken. The absence of ritual or commemoration of pregnancy loss sends a message loud and clear: “Your loss is not a real loss. It is not worthy of the community’s attention or caring.”

Ouch.

So we wanted to do something about that. We wanted these important community members to feel held and supported and we wanted to validate their loss and let them know that they are not alone in their grief.

This month, we participated in Yesh Tikva/The Red Stone’s “Infertility Awareness Shabbat” in an unusual way. Our goal was to create a space for empathy and understanding about infertility in the very tight-knit, family-focused Jewish community. But, rather than ask our clergy to talk about infertility or pregnancy loss in a sermon as has been traditional, we decided to do something new.

On the Sabbath before Passover, the Agam Center at Ohev Sholom invited the entire community to “Light A Candle For Your Loss.” We circulated an anonymous form and asked our community members to indicate the number of memorial candles they would like illuminated on their behalf and gave them the option to have their candles dedicated or labeled in the manner of their choosing.

The response from the community was overwhelming. We lit forty-seven candles, submitted anonymously by thirty individuals – just from our 300 family congregation alone. We displayed these candles publicly, at the entrance to our sanctuary, in our light-filled atrium. Every community member passed by the memorial display on their way into services, and our clergy, Maharat Ruth Balinsky Friedman, invited the community to pay their respects and honor the (often silent) loss felt deeply among our grieving community members.

The responses from the community came pouring in.

“Thank you for doing this. Don’t really have words right now. Just gratitude to have the opportunity to mark my little boy’s birth, especially so close to the actual date.”

“This is absolutely beautiful. Thank you for giving a voice to so many who are on this journey. All my love and support for your amazing, very necessary work.”

“I thought I’d fill out the form because it was a lovely idea – and then found myself in tears, making a small space for something I mostly push aside. Kudos to you for creating the holy opportunity. Really proud to be a part of this community.”

As far as I know, our decision to publicly anonymously recognize pregnancy loss in the synagogue community is a unique endeavor to validate this loss and create a space for a life-experience that can be so isolating and stigmatized and reframe it as an opportunity for communal support.

As we filed into the sanctuary for Saturday morning services, we stopped to read the inscriptions and dedications next to the memorial candles. They took my breath away. Here is but a sample of what was shared:

“I would have loved to love you.”

“Eternally grateful for the journey you were a part of, as painful as it has been. Your loss made way for those we watch grow, shaping me into a mother who strives for daily patience and gratitude.”

“Mothers Day 2011. You were and then you weren’t. Still wonder why I wasn’t supposed to be your mommy.”

“For the family I thought we’d have and the empty seat at our table that I wish we had filled.”

The Agam Center is working hard to make people feel seen and understand that their community is indeed there for them during their time of sorrow or struggle. We want to help people in the midst of a fertility journey see that they are truly not alone, and that there have been so many others – even right in their very synagogue community – who have walked this path with them. We are creating a space to mourn something that is usually so privately painful – particularly in a tradition that is, ironically, so “good” at supporting mourners in other circumstances. I am hopeful that we can begin to highlight ways that communities can create spaces for these losses and families unrealized.

Rather than staying home and feeling isolated, these mourning couples made a point to come to synagogue that week and watched as others learned about and began to appreciate the magnitude of the loss they were feeling. They came inside from standing on the fringe of the community and felt embraced and found solidarity, all without a word. This heartbreakingly beautiful display was our community’s way to show that all loss is real loss and to remind those still struggling that they are not alone in their grief of hopes for the family of their prayers.

May our communities know no more suffering. Amen.

Complete Article HERE!

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How a funeral from half way around the world can seem familiar

South Vietnamese funerals often include street performers such as fire eaters and snake handlers. Here a brass band watches as a performance takes place.

By Euan Kerr

[G]iven the long and diverse history of human kind, it’s remarkable how alike customs can be in different parts of the planet.

That’s the idea behind a new exhibit at the Minneapolis Institute of Art opening this weekend. The show is built around a movie called “The Living Need Light, the Dead Need Music.”

That title is an almost direct translation of a Vietnamese phrase, said Tuan Andrew Nguyen, whose artist collective called the Propeller Group made the 20 minute film.

He said the title captures the essence of Vietnamese funeral practices.

“These ceremonies have to be lively and have a lot of music,” he said.

The Propeller Group film includes a well-known Vietnamese brass band which performs at funerals. For the film the group had them march in unusual places including mud flats.

Music at those funerals often comes from brass bands. And Nguyen, who spent part of his childhood in the U.S., said they reminded him of New Orleans jazz funerals, and that got it got him thinking.

“We found this really interesting kind of overlap between the two cultures that don’t speak to each other directly, yet they have like very similar ways of celebrating death,” Nguyen said.

That is part of the thinking behind “The Living Need Light, the Dead need Music.” The film is beautiful, engaging, and sometimes disturbing. It features many of the performers hired for funerals in Vietnam: professional mourners, acrobats, martial artists, fire eaters, snake handlers.

“For us, it’s about making a film that pays homage to the people that labor around the idea of death, “said Nguyen.

A central character in the film is Sam, a transgender woman. Transgender people often perform at Vietnamese funerals, one of the few places where they are welcomed.

While the Propeller Group is an artistic collective based in Ho Chi Minh City, Nguyen said, it initially described itself as an ad agency so it could get around government restrictions on film making.

Propeller described its early work as music videos, and it’s a term Nguyen uses for this work too.

“The film kind of sits on the edge of being documentary and fiction,” he said.

Minneapolis Institute of Art Photography and New Media Curator Yasufumi Nakamori said that was attractive to him. He realized he could build a show around the film using Mia’s vast collections.

“I invited them to collaborate with the museum, for them to select the objects and create the installations” Nakamori said.

Starting with the collection’s database, Nakamori and the Propeller Group searched for objects that reflected the ideas and artifacts in the film.

Minneapolis Institute of Art Curator of Photography and New Media Yasufumi Nakamori, left, and Propeller Group member Tuan Andrew Nguyen pose with a 10th century Chinese funerary mask. It’s at the entrance of the latest New Pictures exhibit at the Institute, which is based around a movie the Propeller Group made on Vietnamese funeral practices. The exhibit also includes artifacts from the museum’s collection and sculptures created by the Propeller Group. These include funerary masks of members of the Propeller Group, including Nguyen, created using 3D printers.

They gathered pieces from the Asian, African, Native American and classical collections, including a 4,000-year-old Egyptian model boat. It’s believed to be the oldest object in the Institute’s holdings.

As visitors enter the gallery, they see the film, playing continuously at the far end of the room. The objects stretch out towards the screen like a funeral cortege.

Mixed in with them are sculptures the Propeller Group made to build commonalities with the movie. A sixth century Buddha figure is surrounded by a gilded ring of fire similar to a scene in the film.

Also like in the film, there’s a huge ouroboros — or a ring formed by snakes, latching on to each other’s tails.

For the New Pictures show, Nguyen and Nakamori searched the Institute archive for pieces from cultures around the world with similarities to the images in the Propeller Group film.

The final effect of the show is somehow both alien and utterly familiar. Nakamori hopes visitors will recognizes the ideas if not the objects.

“I don’t want it to be just this exotic film from South Vietnam,” he said. “Rather I want a viewer to connect with their own lives.”

One example hangs on the wall at the entrance to the show: a 1,000-year-old gilt bronze funerary mask of a young woman. After seeing it Nguyen and another Propeller Group member had their own masks made using 3D imaging. They hang on the wall nearby.

“In these days and times where the selfie and the way that people imagine themselves and their portrait becomes so prevalent,” he said, “we wanted to rethink that.”

As Nguyen stood looking at his own death mask, he quietly said, “it’s surreal.”

Complete Article HERE!

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Death in the age of Facebook

Issues around social media may feel new, but technology has always created conflict in the way we grieve.

by

[I]f you’re reading this, three things are true.

You were born. You will die. And now, thanks to the internet, you’ll be publicly mourned.

Loved ones will change their profile pictures to photos of you. Stories will be shared on Facebook, Twitter, Weibo, VK. People may even snap selfies of themselves attending your funeral.

As familiar as we’ve become with the digital world, we’re still in the midst of adapting to our emotion-filled existences lived online. As social media evolves, we’re changing the ways we interact. The result: new etiquettes and new normals for every aspect of the human experience.

Even mourning.

“Over millennia, different communications media have affected and influenced how people relate to the dead,” says Tony Walter, professor of death studies at the University of Bath. “I see online mourning as the latest chapter in a story with a very long history and prehistory.”

Walter has tracked the evolution of grief back to the Stone Age. From the development of writing and mass literacy to photography and the recording of sounds and images, all had an identifiable effect on how we mourn.

Some academics see a strong parallel between grief on the internet and the advent of photography in the 19th century.

“That was revolutionary, this idea that you could have an image of the deceased,” says John Troyer, director of the Centre for Death and Society at the University of Bath. He’s also a member of the Order of the Good Death, a group of funerary professionals, academics and artists working to demystify death in a culture that fears it.

“Any new technology that gets used when it comes to death will almost always cause a momentary panic or freak-out,” he says. “Whatever the technology is, it just seems inappropriate.”

Post-mortem photos are considered shocking now in western culture, but there’s an ancient precedent for the practice. Taking likenesses from the bodies of the dead dates back at least to Roman times, when death masks were cast in wax. The masks would then be displayed at home and sometimes worn at funerals.

Nipper the dog, now recognised as the mascot for audio label HMV, was originally painted listening to an Edison phonograph recording — as he sits perched atop a coffin. One of the technology’s imagined uses would be the preservation of the voices of the dead.

Death masks were used in more recent history, before the invention of photography, to capture a likeness of the deceased, particularly of important people. Some museums display death masks of notable figures, including the poet Dante and Napoléon Bonaparte.

A form of the Roman tradition of wearing the masks has returned on Facebook, where users in mourning often change their profile photos to those of lost loved ones.

The practice is also reminiscent of Georgians wearing black armbands, which served as visual signals the wearer was bereaved. Grief, experts say, used to be expressed in public.

In the modern world, however, our lives allow only so much time to mourn. Jobs keep us busy, families are on schedules. In the US, the situation is exacerbated because there is no federal bereavement law allowing people time off to grieve.

“I really believe that a lot of these social media mourning rituals are popping up because people aren’t able to mourn in public spaces the way that they used to,” says Candi Cann, an assistant professor at Baylor University and author of “Virtual Afterlives: Grieving the Dead in the Twenty-First Century.” “People have this need to be recognised as grievers.”

The portable tombstone

We’ve always talked to the dead.

Since the invention of the phonograph in 1877, people imagined audio recordings would be used to capture loved ones’ final words and preserve the voices of those departed. In private moments, we might even respond with “I miss you,” “I wish you were here,” or “You always knew what to do.”

This kind of talk has now made its way onto the internet. A message posted to a dead friend or a remembrance on a birthday demonstrates someone’s memory lives on.

Social media lets you address the dead directly and demonstrate that their memory lives on.

“When people would go and visit the tombstone and they would talk to the deceased, now you’re seeing that on the internet,” says Cann. “It’s essentially this portable tombstone.”

Social media gives us the illusion that the dead are still among the living. You can go to a Facebook or Twitter profile to read the person’s posts and look at their photographs. You can address them directly and post on their timeline.

“Most people will address the dead directly in the second person,” the University of Bath’s Walter says. “They do it knowing other people are going to read this, which is really interesting because if you’re writing to somebody it sort of implies they’re there and in some kind of way hearing this or receiving it.”

I Was Here

One of the most contentious issues around online grieving is the funeral selfie. It’s just what it sounds like.

Mourners pull out their phones, snap photos of themselves and other bereaved, and post to their favorite social media sites. To many, it seems gauche, even self-centered. It’s the latest example of a new death practice and it feels shocking to some people. A famous Tumblr even documented the trend until 2013, when it stopped updating.

“I think it was just an easy way for adults to tut at youth, like, ‘My God what are the kids doing, the kids these days are being corrupted by the technology,'” Troyer says. “I’d be more surprised if younger people weren’t taking selfies at funerals, because that’s what the phone has turned into.”

For a generation that’s grown up with phones and social networking, Cann says the selfie is just another component of their visual diaries. She says she’s seen that in her own daughter, who had surgery when she was 6 years old and asked to have her photo taken as soon as the operation was over. She wanted to document that moment.

Funeral selfies are just another entry in what are public diaries. They say, “I’m here and this is an important moment in my life.”

The complicated deaths

There are much darker taboos than whether it’s acceptable to snap a selfie at Gran’s funeral, like the deaths no one wants to talk about. Miscarriage, sudden death, suicide, voluntary euthanasia.

These are “complicated deaths,” says The Order of the Good Death’s Sarah Chavez, who also co-founded Death and the Maiden and helps run Death Salon. Unlike the sad but expected death of an older person or an ill patient, these can be controversial endings that make people uncomfortable. The response to these deaths can be very different.

Rather than an outpouring of support, the bereaved can feel isolated — and sometimes worse, Chavez says, speaking from experience.

Three years ago, Chavez’s unborn child was diagnosed with a fatal disease. When she told anyone, even medical professionals, the reaction was same.

“From dealing with decisions to counselors to specialists to anybody who I told, there was an immediate recoil,” Chavez says. “No one wanted to face me or deal with me.”

People mourning these deaths may look to social media, hoping to find people who’ve experienced similar traumas. Online social groups also provide a barometer to see how people will react.

It’s not always for the better.

Chavez said she scoured the internet for people who had experiences similar to hers. She found few. And those who posted their experiences overwhelmingly faced hostility.

A woman she knew gave birth to a stillborn child and, in her grief, got a tattoo of the child’s scan. She then took a photo and posted it to social media.

The response, from hundreds of people, was devastating.

People berated the mother, telling her “she should go die,” Chavez recalls. “Somebody actually said, ‘This is creepy wrong shit’.”

That’s changing, if slowly.

Private, safe forums have sprung up. Facebook groups have been created for people processing these deaths to seek support from others feeling the same emotions.

“Social media has really created this space for marginalized communities,” Chavez says. “It can make people feel like they’re not alone, there are others out there that are grieving with them, or are hurting, or are angry, or whatever those emotions are.”

Sun setting on gravestones at Abney Park Cemetery in London.

Etiquette in all things

So how should you respond to bereavement online? It’s not very different from how you’d respond offline, says Daniel Senning, a manners expert and spokesperson at the Emily Post Institute, an etiquette organisation.

“The first major faux pas that often happens is that you don’t want to scoop the news,” Senning says, noting that information travels fast on social media. “You don’t want to precede the family’s announcement onto social media if you can help it.”

Those close to the deceased should be told in person, but social media is appropriate for making sure a person’s wider circle sees the news.

As for offering condolences, Senning says there’s nothing wrong with responding to the news of a death in the medium you heard it. But that doesn’t mean you have to.

Senning says a handwritten condolence note carries the most weight. “In today’s rich communication environment, in making the choice to send a handwritten note, the medium itself becomes part of the message,” he says.

The more things change…

As it always has, the way we mourn is evolving. The internet is democratizing grief, even if the technology leaves us uncertain. But it always has, if that’s any consolation.

“These are just new norms or evolving ones, some of which are quite old and some of which look brand new,” the University of Bath’s Walter says. “It’s difficult for people to kind of negotiate this terrain. But I think it always was.”

Complete Article HERE!

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For old folks left to die at Myanmar’s roadsides and cemeteries, these homes are their last hope

Cast aside “like rubbish” and turned away even by nursing homes, these elderly outcasts are given dignity at the end of life by volunteer groups outraged by their plight.

By Desmond Ng, Ray Yeh and Lam Shushan

YANGON, MYANMAR: There she lay, on the ground in the darkness of night, moaning in pain as rats – drawn to the smell of blood from the lacerations on her body – nibbled at her wounds.

The elderly woman had just been involved in a road accident. But instead of getting help, the driver had abandoned the woman next to a rubbish dump by the road to fend for herself.

Daw Khin Ma Ma said her stomach churned at the sight of the battered old woman who was eventually conveyed to her nursing home. “Her rib bones were broken, some of which had pierced her lungs. We could see a hole in her back that had been gnawed on by the rats,” she said.  

“I’ve never seen such a terrible case before.”

The woman died some six months after arriving at the home.

Daw Khin is the vice-president of Twilight Villa (See Sar Yeik), a nursing home in Myanmar which takes in abandoned sick elderly citizens whom other homes turn away. This horrifying episode is just one example of why she is so dedicated to helping this group.

Cases of seniors being left abandoned by families near markets, railway stations and even cemeteries are on the rise. “These grandpas and grandmas at our nursing home have been cast aside at hospitals and under bridges like rubbish,” she said with heat.

(LINK: Poverty forces families in Myanmar to ditch their elderly)

Twilight Villa is tucked in a quiet corner surrounded by thatch and bamboo houses, an hour’s drive from downtown Yangon.

It started out with just eight senior citizens housed in a one-storey building in 2010, but today, it operates out of a modern four-storey building that includes an intensive care floor, courtesy of generous donors.

The home currently has capacity for about 70 people, but there are 50 more on the waiting list. It takes in only those over 70 years of age who are ailing and without any traceable family.

FAMILIES GO TO LENGTHS TO DUMP THEIR ELDERLY

Daw Khin is among a small but growing number of individuals and local non-profit organisations that have stepped forward to help the sick elderly who are in the last years or even months of life.

They have no training in nursing nor geriatrics, driven only by their passion to provide this group with dignified end-of-life care.

Daw Khin, a criminal lawyer by profession, co-founded Twilight Villa along with local philanthropist and award-winning writer Daw Than Myint Aung in 2010, after they found that nursing homes were unwilling to accept the sick elderly.

She said that some of these seniors are referred to them by the police, and they have little memory of their identities.

“Sometimes in the pocket of their jacket, there would be a note with just their name and age, such as Daw Pu, age 80. That’s all. When we ask them more, they can’t remember anything else,” she said.

Photos of volunteers with the residents at Twilight Villa.

Daw Khin fumed at how some caregivers go to great lengths to abandon these seniors – even using different modes of transport to ensure that they can’t find their way home.

“They might be transported in a car, then a trishaw, and then by ferry to the other side of the river where they’re abandoned,” she said.

Some are dumped because they had suffered a stroke or some mental illness. “When we ask them where they live, they would say, ‘a market is near my house, and I have little grandchildren’. If they could remember more details, we would surely send them back,” she said.

Then there are those like 87-year-old Daw Kyi Kyi, who was referred to the home after her husband and two sisters died. She has no children.

She wakes at 5am every day and spends her time praying and meditating. The company of friends and the staff at the home help to relieve any loneliness.  “I am happy here,” she said. “I can live peacefully; it’s like living in heaven with all my friends.”

TURNING TO SOCIAL MEDIA TO RALLY HELP

Like Twilight Villa, the group Save The Aged focuses on the sick elderly who have nowhere else to go.

It was started by a group of 15 young, public-spirited volunteers who were so moved by their plight, they took to the Internet and social media to rally help for them.

So successful were they that – for a country with a low Internet penetration rate – they managed to raise enough funds solely through social media to open a nursing home in 2015.

Save The Aged volunteers Hnin Hnin and Phyo Thiri

Volunteer and accountant Daw Phyo Thiri said: “There were other organisations such as Save the Children but there were none that looked after the elderly. We were inspired to create a group to help those that we had met.”

They started out by repairing the homes of these old folks and helping them with expenses such as for food and medicine, as well as conveying them to the hospital when they were sick. They had no donors initially, and most of their expenses were borne by the volunteers.

With no physical office, they communicated via WhatsApp and social media, posting pictures and videos of their activities on Facebook. As their digital presence grew, they managed to get donations and more volunteers, especially among the young.

Save the Aged currently provides care and accommodation to around 25 homeless elderly, all aged above 65.

Resident Daw Kyi Kyi Khin, 85, was living alone and surviving on occasional donations when some Save The Aged volunteers brought her to the home.

She said: “Now I live peacefully here and I have nothing to worry about. They treat us like their own parents or grandparents.”

NO MONEY TO DO MORE

However, funding continues to be an issue for these NGOs – a problem made even more acute in a poor country like Myanmar.

Daw Phyo said Save The Aged would like to do more but is limited by the lack of resources. The NGO relies solely on donors, who include Myanmar nationals overseas in countries such as Singapore, South Korea and Australia.

When they were building the home, they had to pay for the construction in instalments – and at one stage, they ran out of funds. Thankfully, another appeal for funds online managed to raise enough to complete the project.

“We only have enough funds to run the day-to-day operations,” said Daw Phyo. “For the longer term, we would like to expand, to buy new land and build new homes. We would like to support the elderly even more, and we are looking for donors.”

Twilight Villa, too, relies mostly on public donations.

The government’s Social Welfare Department provides the organisation with 25,000,000 kyats (S$26,000) a year in subsidies but they can only use it to buy rice.

Daw Khin said she would prefer to have more flexibility with the subsidy, for medical supplies or to pay their employees.

AN AGED HOME WITHOUT ELDERLY?

But more than that, she would love to see the day when there is no more need for homes such as hers.

She cited the example of one home for the aged she knows of which – curiously enough – has no seniors living there.

The residents in that village in the state of Kachin have learnt to value and respect their elderly folks for the part they have played in society, and so everyone chips in to take care of them in their twilight years, she said.

“If a family is too poor to take care of an elderly person, they will bring that person to another family who will take care of him or her. The whole village takes care of the elderly. That’s why there is no old person in the home for the aged.

“This is excellent. We need this to be the situation in every family,” she said.

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Inferior End of Life Care for Ethnic-Minority Patients With Ovarian Cancer

Study findings show that “important disparities in use of end-of-life care persist among racial and ethnic minorities.”

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[A]frican-American and Hispanic patients with ovarian cancer in Texas were more likely than Caucasian patients to suffer invasive or toxic treatment and to be admitted to the ICU in their final month of life, according to a study published in the Journal of Clinical Oncology.1

“We found being a minority was associated with receiving intensive and invasive end-of-life care among patients with ovarian cancer,” reported lead study author Jolyn S. Taylor, MD, MPH, of the University of Texas MD Anderson Cancer Center in Houston, and colleagues. “Irrespective of other sociodemographic factors, patients of black or Hispanic racial and ethnic backgrounds were less likely to meet end-of-life quality-care metrics.”

The authors analyzed data from the Texas Cancer Registry and Medicare to assess the treatments administered to 3666 patients with ovarian cancer who died between 2000 and 2012. Seventy-seven percent of the patients were Caucasian, 15% were Hispanic, and 7% were African-American. (One percent of patients were classified as “other.”) Only patients who had received 13 months of Medicare coverage before death were included in the analysis.

Most (72%) patients had been enrolled in hospice but only 64% were still enrolled when they died, the study team noted. Median enrollment was 20 days.

“In the final 30 days of life, 381 (10%) had more than one ER visit, 505 (14%) more than one hospital admission, 593 (16%) ICU admission, 848 (23%) invasive care, and 418 (11%) life-extending care,” the authors reported.

Ten percent (357 patients) received chemotherapy during the final 2 weeks of life.

Ethnic and racial disparities in end-of-life care remained statistically significant in multivariate analyses adjusting for year and age at death, tumor stage, comorbidity index, income and education level, and location of residence. Race and ethnicity correlated more strongly with outcomes than income, education, or geography.

“Several outcomes differed for minorities compared to white patients,” the authors concluded. “Hispanic and black patients were less likely to enroll and die in hospice (black odds ratio [OR] 0.66; 95% CI: 0.50-0.88; P = .004; Hispanic OR 0.76; 95% CI: 0.61-0.94; P = .01.”

Hispanic patients were also more frequently admitted to the ICU (OR 1.37; 95% CI: 1.05-1.78; P = .02), while African-American patients more frequently received multiple ER visits or underwent life-extending procedures (ORs 2.20 and 2.13, respectively; P < .001 for each).

The findings show that “important disparities in use of end-of-life care persist among racial and ethnic minorities,” the authors concluded.

Complete Article HERE!