Feature

Nina has twice faced down death. But she still can't discuss it with her kids

Australia's population is ageing, but experts say too few people are discussing end-of-life plans. A growing global project aims to change that.

A woman wears a red head scarf.

Nina Angelo at a death cafe in Sydney. Source: SBS News / Spencer Austad

Nina Angelo is a lively, creative 76-year-old who describes herself as an artist, poet, storyteller and celebrant. She has also twice confronted her mortality in recent years.

Nina underwent months of chemotherapy in 2020 after being diagnosed with stage four lymphoma, which she says had spread to her pelvis and spine.

"My cousin, who is an associate professor of nuclear medicine, rang me and said: 'Nina, you have to have the chemotherapy, it's really bad and you've got to hit it fast'," she says.
A woman sits in a tree after losing her hair during chemotherapy treatment.
Nina Angelo in 2020 after chemotherapy treatment. Source: Supplied / Nina Angelo
The treatment may well have saved her life but it cost two things close to her heart – a love of coffee and her vibrant red hair.

"They are just material things that you don't hold onto. It's your spirit that is continuous," she says.

Three years later, Nina fell down stairs in Melbourne, breaking her shoulder, rib, wrist and hand. Months of rehabilitation followed.

"Even though my body was broken, and breaking down, my spirit really came to the fore and I said: 'No, you're going to be around for a long while yet.' And look at me now."
A woman standing in between her children and granddaughter.
Nina with her daughter Cassie (left) and son Adam (front), both 50, and granddaughter Zayla. Source: Supplied / Nina Angelo
Nina has gradually recovered but desperately wants to discuss end-of-life issues with her adult twins, aged 50.

"It's somewhere that they just don't want to go with me," she says.

Nina was among a group of strangers who gathered in Sydney's Newtown in December for tea and cake.

That, in itself, is not unusual. But this group met with a particular purpose - to discuss death and dying.

It's part of a growing global death cafe movement.

"The first death cafe was held in Switzerland in 2004, run by Swiss sociologist and anthropologist Bernard Crettaz," says facilitator Melissa Halliday.
Death cafe facilitator Melissa Halliday sitting in a garden.
Death cafe facilitator Melissa Halliday. Source: SBS News / Spencer Austad
"Then Jon Underwood picked it up in London in 2011, and it's been growing worldwide ever since. It's now in 85 countries and it is a phenomenon."

The 'social franchise' premise is simple enough. The cafes are not-for-profit and encourage strangers to gather over tea and cake, and speak openly about death and dying in an "accessible, respectful and confidential space".

"A death cafe will open up conversations. There's no agenda in the death cafe," says Halliday, who has facilitated these gatherings for over a decade.

"There's always a lot of honesty in a death cafe. Conversations may flow in unexpected directions, often with a lot of humour."
Death cafe participant Eric Yeung sitting in a checked shirt .
Death cafe participant Eric Yeung. Source: SBS News / Spencer Austad
Eric Yeung was keen to join the conversation at the Newtown cafe. He recalled fulfilling his wife's final wishes to die at home, as she succumbed to lung cancer two years ago.

"She was comfortable and she was happy. But what I couldn't handle is that a few days before she died, she looked at me and said: 'I don't want to die.'

As he questioned the decision to bring her home from hospital, his candid memories brought the group to tears.

"Speaking openly about death challenges many cultural norms in the Chinese community," he says.
"It is taboo [to discuss death] in many Asian cultures, and many people don't even want to talk about cancer," he says.

Yeung is now president of the cancer support service CanRevive, and helps to lead conversations around end-of-life issues.

"Some people don't want to go to hospital, or get treated because of some of the cultural taboos," he says.
According to the federal government, over the next 40 years, the number of Australians aged 65 and over will more than double and the number aged 85 and over will more than triple.

Palliative Care NSW CEO Kirsty Blades says despite living longer, too few people are willing to discuss their end-of-life plans.
A woman in a purple top.
Palliative Care NSW CEO Kirsty Blades says having open conversations around death and dying can be "really empowering for people". Source: SBS News / Spencer Austad
"Palliative care has a real focus on the living. But to live well to the very end does mean that you need to think about what dying well means to you.

"And that's where death cafes and forums like this become so important, because it's an open conversation around death and dying.

"And that can be incredibly useful and really empowering for people."

Nina has Greek heritage, and her family history is as traumatic as the events she recently survived. She arrived in Australia as a child in 1949 after the Second World War, with her European parents.

Both Holocaust survivors, they briefly met in the Auschwitz concentration camp towards the end of World War Two.
A black and white photo of a couple.
Nina Angelo's parents survived the Holocaust. Source: Supplied / Nina Angelo
"My mother was a young Polish girl, 16 years younger than my dad. And she saw all her family being taken.

"My father was a Greek man, a Greek Jewish man, and he was an elite prisoner in Auschwitz.

"When the war ended, they were taken on their death marches in different directions. And then they met again in Paris in a Red Cross canteen."

After marrying, they migrated to Australia and, still bearing tattooed numbers on their arms from their time in Auschwitz, began a new life in Sydney alongside extended family.

"They celebrated life, they danced. My father was an importer who brought early Italian records into Australia. We had music always.

"They spoke 13 languages between them. So our lives were full of people and gatherings and parties and love."
A man in a white T-shirt in front of a table full of people.
Death cafe participant William Roach. Source: SBS News / Spencer Austad
Nina's family history and health challenges touched many in the death cafe group, including 61-year-old William Roach, who for 10 years took calls at crisis support charity Lifeline.

"I would love to see more of these death cafes because there is an invisibility about death. We just do not have these discussions often enough. It's not something we think about.

"It gives us permission to explore these issues publicly without fear of being judged."
A group of people sitting around a table with tea and cakes.
The Newtown death cafe in session. Source: SBS News / Spencer Austad
Blades agrees. "We do come, particularly in the West, from a culture of death denial," she said.

"So, with people living longer, it's really important to have conversations not only about how I would like to die, but would I like to die at home? What does a good death mean to me?

"What would I like to leave as my legacy? Would I like to be cremated or buried? What are my green options? These conversations we need to have with family and friends.

Blades says that often, people can only start having those conversations when they're given a life-limiting diagnosis.

"That is already an incredibly stressful time in your life.

"So, we are really trying to encourage people to think about it earlier, so that it is not one of the things you are dealing with."
One person speaking while another looks on.
Nina Angelo at the death cafe. Source: SBS News / Spencer Austad
Nina hopes the cafe will help her to open up a conversation about death with her adult children.

"I don't want to leave things undone. I don't want them worrying or fighting. And being a celebrant myself and having done funerals, I know what goes on in families, so I want to talk to them.

"Death is the most normal thing, and everyone's going to die eventually. So talking about it takes courage, to actually go into that place and share it.

"As an artist and storyteller, that's what fills my heart."

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7 min read
Published 30 December 2023 8:48am
Updated 8 January 2024 12:10pm
By Sandra Fulloon
Source: SBS News


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