The number of U.S. residents aged 65 or older living with Alzheimer’s disease, the most common form of dementia, is expected to double from nearly 7 million to 14 million by 2050, according to a new report.
Dementia is a progressive disease which gets worse over time, eventually making it impossible to communicate or make decisions.
Jessica Empeño, national director of clinical engagement and education for Compassion & Choices, explained a new online tool can help people plan ahead so their wishes can be honored.
“The people around them — whether it be their family, their loved ones, their health care team — know what is important to that person and what types of care they hope for in the future,” Empeño emphasized.
Compassion & Choices’ free Dementia Values and Priorities tool is designed to help people communicate and document their future health care wishes before developing or in early-stage dementia. A series of questions and educational videos guides users through a range of changes commonly seen in the disease’s progression.
Kim Martin, a resident of the southwest Colorado town of Hesperus, used the tool after receiving her Alzheimer’s diagnosis. She had become increasingly anxious about what the future would bring and said the tool helped her specify her intentions so her husband and children would have no doubts about how to support her.
“Being able to get it all on paper and tell it to my family really improved my outlook and really improved my ability to move past that stage,” Martin noted.
Empeño stressed the value of documenting end-of-life health care decisions cannot be overstated, especially for women, who represent nearly two-thirds of Americans 65 or older living with Alzheimer’s. She encouraged people to use the tool, share the documents with the people you love and trust, and help them understand what is most important to you.
“While completing the legal documents is really important, the most important point is having the conversation,” Empeño pointed out. “The best way for you to get the kind of care that you want, especially at the end of life, is to have those really important conversations.”
— How living funerals are changing the way we deal with death
I watched my own dad die when I was 25, and it made me realise how awkward people get around the subject. I wanted to see if living funerals – both those for the terminally ill and those who are not – are opening up how we talk about death.
I am lying in a coffin, the lid gently placed on top. A warm light filters through the woven fibres, as a meditation chant reverberates around the room.
“Welcome to your funeral,” death doula Emily Cross said, moments earlier.
A photograph of me and my husband sits between two flickering candles, with confetti from our wedding scattered in front of the frame. I wriggle, trying to relax but coffins, it turns out, aren’t designed for comfort.
Meditating on my own death isn’t how I spend most Tuesday evenings. But like many who seek out Emily’s services, I am intrigued by the idea of confronting my own mortality.
“Everyone comes with a different reason,” Emily, 35, says when I ask her about the kind of people who usually attend. Sometimes they are dying, sometimes they are just curious about the service.
I watched my own dad die when I was 25, and it made me realise how awkward people get around the subject. I wanted to see if living funerals – both those for the terminally ill and those who are not – are opening up how we talk about death.
Dad’s funeral was beautiful and cathartic – 500 people packed out a church to celebrate him. I remember wishing he had been there to see how deeply loved he was.
Emily’s living funeral is a more solitary affair, and you don’t need to be dying to do it. To start, she plays haunting music and asks participants to look at a photo of themselves, imagining they are dead. Then they are asked to visualise their bodies shutting down before being “brought back to life” in a coffin.
I only go through part of the ceremony but it’s enough to bring up a raft of emotions. Lying inside the cosy coffin, I remember how shocked I felt seeing Dad in his – that such a larger-than-life figure could fit into such a small space. It’s a relief when the lid is lifted, the room comes back into view and Emily helps me stand.
Death doula Emily Cross
Earlier this year, Kris Hallenga – one of the founders of breast cancer charity CoppaFeel who shares her own cancer journey with her 145,000 Instagram followers – threw herself, what she called, a FUNeral.
Kris sent out invitations shaped like coffins. Inside each was a test tube of tequila and a letter explaining her intention.
Guests were invited to sign a cardboard replica of her coffin and childhood footage was projected around Truro Cathedral in Cornwall. Dawn French did the eulogy in character as the Vicar of Dibley, while Kris gave a speech and sparkled in a glittery jumpsuit.
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For Robert Hale, he decided to hold his own living funeral when he found out he had just months to live. When the 33-year-old aerospace engineer was told by doctors that his leukaemia was terminal, he decided to organise a “happy send-off commemorating my life”.
“The doctors were honest,” he said, his dogs curled up on the sofa next to him. “They said straight from the start, I didn’t have a good prognosis.”
With the support of his parents, he arranged to hold his living funeral at a farm park near his home in Gloucestershire.
“I used to go there as a child for the parties and thought it would be a good place,” he said.
Rob Hale
He was surprised when hundreds of friends and family turned up on the day. At one point, he snuck off to take on what he calls the “death slide” – despite being fitted with a catheter – only to be greeted by 50 people cheering him on at the bottom of the steep drop.
“It was overwhelming,” he said. “I had friends that I hadn’t seen for years. I’d always told myself that I would catch up with them next year, because I thought I had plenty of time.”
Now, he says he can “go without leaving anything unsaid”.
Rob didn’t flinch when he talked about his own death and shared candid accounts of his final year on Instagram. He said he wanted to be honest about what was ahead of him.
“The closer I get to the end, the more important those things become because other people are facing it,” he said.
Rob died three weeks after we spoke – but his parents, Caron and Nigel, told me they wanted his story to be told.
Caron and Nigel Hale
End-of-life ceremonies are nothing new – in some cultures, they have been around for hundreds, or even thousands, of years. But their exact roots are difficult to track.
Before a member’s death, the Native American tribe the Lakota Sioux of South Dakota repair relationships, make amends, and distribute family heirlooms. A similar tradition became popular in Japan in the 1990s as the older generation sought to remove the financial burden of funerals from their children.
In 2019, the Hyowon Healing Centre in South Korea began offering free-living funerals to the public as a way of tackling high suicide rates in the country, which in 2016, was almost double the global average.
Participants, who were usually completely healthy, would undergo a meditation, often while in a coffin or under a shroud, and come face to face with their own mortality and the realities of death.
Death doula Emily says she was inspired by these Eastern practices. Situated in a Dorset village, her Steady Waves Centre is something of an anomaly on this quiet, rural high street. Originally from the US, she says she suspects residents sometimes wonder “what that weird American girl is up to”.
“There’s a [fishing] shop next door, and people just walk in here by accident thinking it’s a tackle shop,” she says, laughing. “I’ll say something like, this isn’t a tackle shop, but do you want to come lay in a coffin?”
So far, no one has taken her up on that offer, she says.
Rachel Bass, a Pagan celebrant, has planned plenty of funerals – including her own.
“I was born with a serious heart condition, so I’ve always been aware of my own mortality,” the 47-year-old says.
Rachel has had several major surgeries for her condition, tetralogy of Fallot, and doctors have always been very clear with her that she is unlikely to “make it to old age”. During the COVID lockdown, her health declined dramatically and she made contact with a hospice to begin planning her end of life – but emergency heart surgery bought her some more time.
But it made her realise if she organised – and attended – her own living funeral, there would be less of a burden on her family.
Rachel Bass
“In the last few years, other problems have arisen,” she says, referring to scarring she has suffered on her liver. “It’s made me more conscious of [death] because I’m only going to go one way.”
Rachel also lost her mum at the age of 24. “For me, it is about accepting that I will not make old bones,” she says.
While we talk, Rachel lightens the mood with laughter, but she does admit that the idea of leaving her 21-year-old son behind makes her emotional. “All I care about is my son, who still relies on me,” she says.
While she doesn’t feel the need to set a date for her living funeral, she has started to plan it. It will be held in the town where she grew up and will feature karaoke and a 1970s-style buffet.
“I’d like to give away my jewellery and certain books at that point too, so I know everything has gone to the right people,” she says.
Jane Murray, who manages bereavement support at the Marie Curie hospice in the West Midlands, tells me living funerals are “definitely becoming more popular”.
She says patients often become frustrated planning traditional funerals: “People think – it’s going to be such a good time and I’m not going to be there. That leads to have you ever thought about having it beforehand?”
Kris Hallenga was supported with her FUNeral by Legacy of Lives, a social enterprise that helps with funeral planning.
“We hope it will encourage more people to be open about death and what they want after they die,” says the charity’s chief executive, Rebecca Peach.
Rebecca Peach from Legacy of Lives said how we talk about death is changing
Data from Legacy of Lives found that less than 1% of people surveyed knew the funeral wishes of their loved ones, which Rebecca says can cause trauma, especially in the case of sudden death.
“I hate when I go see families and they don’t know what that person wanted. That’s tough on them at a traumatic time,” says Rachel, explaining why she has been so explicit in her funeral planning.
A party to plan your own death isn’t everyone’s idea of a good time, but after James Barrett’s dad died of lung cancer during COVID, he realised how important it was to know a person’s wishes.
ames hosted a ‘death party’ with his mum and her sisters. Pic: My Goodbyes
He developed the My Goodbyes app to help people plan, and host, their own death parties.
His mother was initially reluctant but agreed to participate. The party they hosted with her sisters ended up lasting two hours.
“They were arguing over which song they wanted, saying, you can’t have that, that’s my song,” James says, laughing.
Pic: My Goodbyes
I empathised with James – losing dad was the most difficult experience of my life, and he only opened up about his own funeral in the weeks before. There was a constant fear of doing something he didn’t want before I ultimately realised there were no wrong choices when it came to planning his funeral.
While stepping into a coffin sounds like an odd form of therapy, I found it cathartic. My mind wandered from the profound: would I be as open as Rob and Rachel about my own death if I knew it was coming? To the mundane: would my husband remember to de-flea the cats when I was gone?
I’ve spent weeks immersed in discussions of death but I have never felt more alive. Because it was Rob, and his courage and strength, that left me with the most to think about.
Rob Hale<
"Death shouldn't be something you hide from," he told me.
"Everyone goes through it. We are all going to die at some point. I think we need to be more open about it and embrace life rather than focusing on death."
Complete Article ↪HERE↩!
If you’ve heard the term “living funeral” pop up as you’re planning end-of-life care for yourself or a loved one, you may very well wonder if you’ve stumbled on a typo. After all, the history of funeral practices in the United States and around the world customarily centers around the time after someone has died.
But no, you read that right. A living funeral — sometimes called a living wake or a pre-funeral — is a ceremony held for a person who is very much alive.
What is a living funeral all about? Why are loved ones opting to throw funerals for the living? Who are they for, and why have they grown in popularity? We asked experts to break down the practice of living funerals and to help you decide if this ritual is one that’s right for you or someone you love.
In its most simple form, a living funeral is a funeral held for a person who is still alive. They are usually performed for individuals who have been diagnosed with a terminal illness or who are advancing in age and coming to grips with their mortality and are typically held in the months, weeks or even days before someone’s death.
While the terminology may be unfamiliar to you, the living funeral concept is not new, says the Rev. George Handzo, director of health services research and quality for the national nonprofit HealthCare Chaplaincy Network. As a chaplain who works with people nearing the end of their life, Handzo says he’s often seen family members come together for a party of sorts to celebrate their loved one.
In some indigenous cultures, Handzo adds, it’s traditional for family members to gather near the end of a loved one’s life and engage in rituals, such as passing on family heirlooms, eating together and praying together as death nears. And the concept of a living funeral has long been practiced in countries like Japan, where the practice is called a seizensō or “funeral while alive.”
What’s the difference between a living funeral and a traditional funeral?
The core concept of a living funeral is the same as that of a traditional funeral — to offer a time and place for friends and family to gather together to honor a loved one. The primary difference between the two is whether or not the ceremony is held before or after the beloved person has died.
Often the tone of living funeral ceremonies is different from that of a traditional funeral as well, says Megan Sheldon, a ceremonialist and end-of-life doula from Vancouver, who’s also co-founder of Be Ceremonial, an app that guides you to create your own ceremonies, including a living funeral or living wake.
“People who come to us often want the event to feel lighthearted, relaxed and fun,” Sheldon explains. “They recognize the sadness and grief people are holding, and they want to focus on how [their loved one] lived their life and not how they are going to die”
What’s included in a living funeral?
The decision around when this sort of ceremony is held or even the shape it takes can differ greatly from person to person, says Willow Baum, an end-of-life planning educator and doula from Callicoon, New York.
“Every person and every circle of loved ones is incredibly unique,” Baum says. That’s why she starts planning by first getting to know the individual’s goals and values to help give shape to a living funeral that is right for them.
For example, an introvert may wish for a small ceremony where people come to visit them at home one at a time or in small groups while an extrovert may want to plan a large get-together with dozens of relatives and friends coming together all at once.
An added bonus to planning a living funeral over a traditional funeral is having the ability to actually ask the person you love what they want included in their ceremony, Baum says. While some people will create a funeral or memorial service plan before their death, asking for clarification on those plans is something that cannot be done when planning a funeral after someone’s death.
“You should really ask them. Don’t guess. Don’t assume,” Baum recommends for anyone who is helping a family member or friend with their end-of-life planning and discussing their final wishes. “This gives people a reason to get deeper with one another.”
While the exact structure and rites included in a living funeral depend on the wishes of the dying person, here are a few practices that might be included:
Candle lighting or bell ringing to open the ceremony.
Shared speeches from family or friends, similar to the eulogies that might be shared after someone has died.
Shared words and thoughts from the celebrated individual for those who have gathered.
An officiant who leads and guides attendees in prayer.
A video stream for family or friends who cannot attend.
Group storytelling and memory swapping among those who attend.
Music and food, chosen by the person being honored.
Allotted time for attendees to spend a private moment with the dying relative or friend.
Baum likes the way most of these living funerals unfold to a celebration of life held after someone has died. A living funeral, however, is heavily imbued with a reminder that “time is finite,” adds Baum.
What are the benefits of a living funeral?
A living funeral certainly isn’t something that everyone needs to add to their end-of-life planning, but there are myriad reasons why this sort of ceremony is one that families may consider.
Here are some of the many benefits that a living funeral can offer:
The opportunity for loved ones to say goodbye – After someone has died, Handzo often hears from friends and family,”‘I didn’t say I love you enough’?” When someone is diagnosed with a terminal illness, the living funeral gives loved ones the ability to do just that: gather to say the things often left unsaid. “We do far too little in our culture of saying goodbye and thinking of the dying person,” Handzo adds.
A means for the dying to play a role in the ceremony – The act of planning a living funeral can offer catharsis in and of itself, Baum says, allowing someone a chance to take control of their own end-of-life ceremony. For some, she says, it helps them work through their feelings about death and the unknown. For others, this simply provides a way to feel less out of control about the future.
A chance for the dying to impart last words – A living funeral gives someone who is dying the ability to speak with loved ones and friends who they might not otherwise get to see before their death, especially if time is short and separate visits for each person are too taxing. This could take the form of sharing words of wisdom with a grandchild, offering an apology to someone with whom they’ve had a falling out or simply sharing information.
A place to highlight positive memories – While the finite time remaining with their loved one may inspire a tinge of sadness, the storytelling element of a living funeral can be uplifting too, giving people a reason to laugh and smile. Sheldon helps families and friends to explore memories in positive ways by creating “memory walkways” with clients. “We hang photos from their lives down a path,” she explains, “and invite people to walk down listening to favorite music while they notice all of the photo memories and moments of significance.”
A space for families to come together – Simply providing people a place to come together is an added benefit, Handzo says. Busy family members can reconnect and reforge bonds that can provide needed moral support as individuals come to grips with their own feelings about their impending loss and possibly their own mortality.
Can anyone have a living funeral?
If the benefits of planning a living wake sound appealing, you may be wondering if you can start planning your own pre-funeral. Can just anyone have one? Well … technically … yes. But experts have some advice for helping you decide.
“Usually people know they are going to die within a few months and want to do it before they get too weak to appreciate the experience for what it is,” Sheldon says of most living funeral honorees.
That doesn’t mean you have to have a terminal illness, however.
“We’ve hosted living funerals for people who have no intention of dying anytime soon,” Sheldon adds, “but are doing this anyway, as a chance to bring their friends and family together one last time.”
Are there ethical considerations to living funerals?
Of course, there may be some cultural, emotional and sometimes moral considerations to contemplate before adding a living funeral ceremony to your calendar.
For one, the trend of living funerals represents a generational shift in Western cultures, Baum says, and it’s important to respect that older family members may not be comfortable with the idea. Instead of pushing a living funeral on a dying loved one, she stresses the importance of listening to their wishes and working together. Bringing in an end-of-life planner or death doula can be especially helpful as they bring not just their expertise but an outsider’s perspective during an emotional time.
Handzo also advises that people think deeply about their goals before planning a living funeral. For example, he notes, if you’ve had a deep rift with family members or friends and are hoping that these people will come to your pre-funeral to say nice things about you, it’s wise to reconsider.
“That’s not productive,” he warns.
Handzo also advises against trying to force family members to attend a living funeral simply because someone has finite time remaining before death.
In short, a living funeral should not be used to manipulate people, relationships or emotions.
Nor does Handzo recommend using a living funeral as a means to dissuade family and friends from gathering after you have died. “Sometimes,” he notes, “the family does want to do a funeral and go to the graveside.”
While the pre-funeral can benefit both the dying and the people who love them, a traditional funeral may still be an important part of the grieving process for those who have to say goodbye. There may also be cultural or religious traditions — such as the Jewish practice of sitting shiva for a loved one who has died — that people may still want to carry out after someone has died.
Should you plan a living funeral?
Deciding to have a living funeral is an incredibly personal decision, and if you’re considering suggesting the idea for a sick or dying loved one, you first may want to consult with an expert who can help you through the conversation. In particular, Sheldon warns that some people who have yet to accept their death may find talk of a living funeral triggering.
If you’re pondering whether or not this type of ceremony is right for yourself, Baum says it can be helpful to think about it not just in the context of your own wishes but also how it may affect those you are leaving behind. Just as writing out your wishes for what you would like to happen after you have died, planning out the time you have before your death can help loved ones better understand how to support you.
“To think about your own end,” she adds, “is to give the people who are going to do the wrapping up in the end a roadmap.”
