By Multimedia Producer Narbeh Minassian
Sam Skelton may have a only few months to live and she’s finding it difficult to forgive herself for the grief she feels she will cause her family and friends.
She was diagnosed with lung, lymph, pleural and spinal cancer in October 2021 and is increasingly thinking about how she wants to spend the time she has left and how to say goodbye.
Almost two years on, Sam, 57, opened up to ITV News over email; she doesn’t feel sharing on social media can give her or others the closure they need.
Just the other day, a friend she made in her outpatients group posted what she knew would be her final message on Facebook – with hundreds leaving tributes in response as she neared the end.
Sam suspects she probably never read them.
"It really made me think of the importance of being able to say those last words," Sam said. "It’s important for those grieving but also for me to actually hear them."
That’s why Sam is one of a growing number of terminally-ill people in the UK thinking about planning one last goodbye while she is still around – a 'living funeral.'
"I want to be able to let go and forgive my body for failing and forgive myself for abandoning everyone and everything I love," she said.
"It’s a terrible feeling knowing you’re letting everybody down. It’s really difficult to resolve the conflict between your failing body and your mind.
"I think a living funeral would allow everyone a meaningful and personal goodbye.
"A proper celebration of my life, but also a forgiveness of my body for not going the distance and the peace to die as a whole person, being loved and loving myself as I should."
What are living funerals?
Living funerals are a relatively new idea and growing in popularity, according to Suzanne Grahame, CEO of funeral directors Golden Charter.
They can take many forms and could involve a party, a more traditional wake or something entirely different and bespoke – the only thing that’s consistent is the person dying will be there to see friends one last time.
They also represent a more affordable option. According SunLife, a financial services company for over-50s, the total average cost of a traditional burial was £4,794 in 2022, while a cremation was £3,673.
While the concept has started to take off in the UK over the past few years, living funerals have been popular in Japan, where they’re called seizenso, since the 1990s.
Mitch Albom’s 1997 book Tuesday’s with Morrie, in which he chronicles his time with his terminally-ill former professor, gave added credence to the idea.
"All those people saying all those wonderful things, and I never got to hear any of it," the professor said after attending a wake, an event that inspired him to plan his own living funerals.
Why do people have living funerals?
That feeling, explored in Albom's book, that funerals are wasted on the dead is what appears to drive many people to think about attending their own, says Jane Murray, from West Midlands Marie Curie Hospice in Solihull.
"When I talk to family after the patient has died and we ask how the funeral was, they usually say 'they’d have loved it'," said Jane, who has worked at the hospice for 30 years and been part of the family support team for 18.
"So it’s almost like the patient is saying that they want that opportunity to be there and say a final goodbye to people, but I think it’s more about celebrating their own life."
Ten years ago you "wouldn’t have heard of a living funeral", Jane added, but they’ve become more popular with each passing year since then.
A big factor, she believes, was Covid.
"That first year when people were so isolated, you could only see people in your bubble," she said.
"Particularly if they were diagnosed during Covid. They’ve got this life-limiting illness and wouldn’t have seen family and friends because of restrictions.
"Now they may be going through chemotherapy and could even have compromised immune systems that mean they haven’t been able to see that many people – so living funerals are a way of reconnecting with people in person."
What do they look like?
How they choose to reconnect with loved ones for a final time can vary from low-key occasions in a back garden to grander events in hired-out spaces.
Linda Williams went for the latter and “never felt so loved” as she did at her farewell 40s-themed party on October 1 last year, her friend Jo Oxlade, who spoke to ITV News with permission from Linda’s family, said.
Known as “Spitfire Lin” to her friends for her love of the WW2 plane, Linda almost died just two weeks before her party and needed friends to organise the throwback.
She dressed as a spitfire pilot and stayed on the dancefloor as much as she could.
"It wasn’t a 'this is my living wake, come to it' kind of event, it was a celebration of life," Jo said.
"She was very ill by that stage, but when you have something to look forward to you keep going. She had never felt so loved and had the time of her life."
Linda was not a particularly emotional person, Jo added, and there were no eulogies.
She had made peace with death – so much so that she even left a note on her fridge saying 'if you come in and find I have gone to another plane of existence, please call these numbers and please take a chocolate biscuit on your way out.'
What happens afterwards?
While Linda didn’t want tears at her party, her dance group – where she met Jo – paid an emotional tribute at their first class after her death on March 23 this year, together singing Vera Lynn’s ‘we’ll meet again.’
Linda, seen on the left in the front row, leads the way with a Shim Sham dance at her living funeral - a move made popular in the late 1920s
It was their way of honouring Linda, who was cremated, at a time when most may expect a more traditional funeral.
"She had the living funeral, and, you think, after she’s gone what do the rest of us do? It makes you wonder why we have funerals," Jo said, adding they still encourage support for Rennie Grove Hospice, where she was cared for.
"Her son got all her friends together to spread the ashes, and we see each other frequently."
Should Sam go ahead with her living funeral, it’s likely to be different to Linda’s.
She imagines a ceremony led by a friend, with music picked by her. There would be eulogies and "lots of hugging."
She is thinking about a wicker coffin, where guests would leave messages and any pictures with which she could be buried.
"There would also be food and drink afterwards and lots of hugging and proper saying goodbye," she said.
She says the decision to have one or not will need to be made "sooner rather than later", while she is still "well enough" to participate.
But what’s for sure is she plans to have her ashes buried under a tree she has picked out in a woodland, so that "people can visit a specific site to remember me."
And how would she like to be remembered?
"It would be easy for me to say as loving, kind, funny, quirky, creative et cetera, and that would be nice, but everyone thinks and feels in different ways and that will be up to them," she said.
"Being remembered at all, having longevity after you are gone is an honour, isn’t it, really? We live such short lives."
For more information or for support with end-of-life care, contact:
Marie Curie has been running for 75 years, offering close palliative care at hospices around the country and support with issues around terminal illness, such as bereavement;
Hospice UK provides care and support for anyone affected by death and dying, with help available across the country.
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