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Facing the Music

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April 2022

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As we get older, thoughts of death and dying might be at the forefront of our minds. We explore the issues and focus on the benefits of talking to our families and loved ones about what happens when we’re gone.

We are all going to kick the bucket at some point. Each one of us will pass on. We’ll expire. We’ll shuffle off this mortal coil. We’ll be ex-people. We’ve got to face the music at some point: we are all going to die. People can get a bit squeamish talking about death, which is why we often use all these euphemisms. Here at Shine, we’re determined to address difficult issues and have awkward conversations. So, here we are, talking about death. Perhaps you’ll be inspired to talk about it too.

Supporting people who
were at the end of their
life was full of joy
and uplifting. There is no right
way to die
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Quote Blue Left-01-01.png

Before we get into it, here’s a story suggested by our resident storyteller, Ruth Steinberg:
 
A merchant in Baghdad sends his servant to the marketplace for provisions. Soon afterwards, the servant comes home white and trembling and tells him that in the marketplace, he was jostled by a woman, whom he recognized as Death, who made a threatening gesture. Borrowing the merchant’s horse, he flees at great speed to Samarra, a distance of about 75 miles, where he believes Death will not find him. The merchant then goes to the marketplace and finds Death, and asks why she made the threatening gesture to his servant. She replies, “That was not a threatening gesture, it was only a start of surprise. I was astonished to see him in Baghdad, for I have an appointment with him tonight in Samarra.”
                                                                                                (From Appointment in Samarra by John O’Hara, 1933)
 
“It’s the one thing we can be certain about,” says Barbara Stewart. Barbara works at Leeds Bereavement Forum and is part of the Dying Matters in Leeds partnership. Dying Matters has a simple aim: to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. “None of us knows when it’s going to happen,” says Barbara. “If we can get stuff in place now, it gives us peace of mind – and it makes it easier for people left behind as well.” By “getting stuff into place”, Barbara means all the paraphernalia that surrounds death: funerals, wills, memorials. But it also means thinking about the more difficult questions: how do we want to die? What if we lack capacity to make decisions? How do we want to spend our final years?
 
Let’s talk about funerals. Funerals are a ritual, a way of saying goodbye. They can be anything you like. We may have an archetypal image of a funeral in our minds. A dusty vicar intones a eulogy over a wooden, brass-handled coffin. Black-clad mourners dab their eyes and mouth the words to a long-forgotten hymn. Afterwards, at the wake, ham sandwiches are piled on a platter and sherry is drunk politely. You might want a “classic” funeral like this; but you might want something a bit different. In 2018, artist Grayson Perry created a TV series and exhibition called Rites of Passage. He set out to “improve” the funeral and help people re-imagine their own. “All rituals were invented by somebody,” he said. “They didn’t just come out of the ether.” Grayson Perry devises funeral ceremonies bespoke to the individual. You don’t have to be so outlandish – but how about choosing which songs to play? It would make life easier for your family and friends. The Dying Matters in Leeds website is full of stories about people who’ve planned what happens after they die. Bob Bury is a humanist celebrant, which means he arranges and conducts non-religious funeral ceremonies. Bob says, “You have complete freedom to choose what to include – I recently conducted a ceremony for a life-long trade unionist, and we all stood up and sang The Red Flag!” Some of us will have a strong faith and would want that to be reflected in the way our funeral is conducted. Others have no faith and would turn in their grave if their funeral was in a church, mosque or temple.
 
The choices you make about your funeral can even extend to deciding on a coffin. We might expect a coffin to be made of wood, but there are other options. Some people have a cardboard coffin. One woman decided to have a plain white coffin and her grand- children were encouraged to decorate it before the funeral. You can even make a coffin out of natural fibres. Hainsworth’s is a Yorkshire textiles company who make the UK’s only woollen coffins. “People love the tactile nature of the coffins,” says Julie Roberts from Hainsworth’s. “You can reflect the nature of the deceased person more closely. There’s a warmth to it.” These days, many people are opting for an “eco- friendly” coffin, made out wicker to be fully biodegradable. It’s also worth thinking about whether to opt for burial or cremation. “You might think these are easy decisions,” says Barbara Stewart from Leeds Bereavement Forum. “But if your family have a steer on what you want, what your beliefs are, it just makes it easier for them.”

Where There’s a Will...
Obviously, during the pandemic meant that people couldn’t hold funerals in the way they would like. Zoom funerals became de rigueur, but didn’t quite hit the spot. We recently interviewed Alison Lowe, West Yorkshire’s deputy mayor, and she talked about how the black community were denied the rituals that were so important to them. “Saying goodbye is a very important part of the Black Caribbean experience,” Alison says. “Coming together, food, storytelling. It’s a huge part of the grieving process. The storytelling amongst people is an integral part of that process.” Thankfully, things are returning to normal and we can attend funerals and wakes again.
 
Let’s talk about wills. Most of us won’t be leaving a fortune to our loved ones. But it would be a good idea
to write down what happens to whatever money and assets we do have. Perhaps the idea of making a will is
a bit daunting? And you do have to pay for it – normally you do have to involve a solicitor. There is another way. “There are lots of charities that run Make a Will campaigns,” Barbara Stewart tells us. “They’ll help
you put your will together and you can make a donation – or leave a donation in your will.” Some of us might not bother or can’t afford to do it. “If nothing else,” advises Barbara. “Just get your wishes down on a piece of paper. Or just talk to friends and family about what you want to happen when you’re not around.”
Let’s talk about dying. Many of us don’t fear death – we fear dying. We dread being incapacitated, unable
to make decisions. We fear pain. We’re not going to delve too deeply into the issue of euthanasia here –
but it’s worth working out what you think. If you have an inkling that you may be affected by certain diseases or issues later in life, it might be an idea to research the support that is available in Leeds. For example, Leeds has many excellent services and support groups for people with dementia, including the Up & Go group, based at Leeds Playhouse. Like a lot of the issues we’re raising, burying our heads in the sand isn’t going to make problems go away. The sooner you start thinking about things, the better.
 
Some of us can use the final years of our lives to make an impact on others. Make that phone call to a friend we haven’t seen for 20 years. Tell our kids we love them. Even settle old grudges! What we leave behind isn’t restricted to financial inheritance. There’s emotional legacy too. There’s a brilliant music initiative in Leeds called The Swan Song Project. “I was inspired to start the project when reminiscing about my grandma and how much I would love to have a recording of her singing with us,” says musician Ben Buddy Slack. Ben sits with people at the end of their life and they write a song together and record it. Ben makes sure that person’s family and friends get a copy of the song – and often they are played at funerals. “The term Swan Song derived from the legend that, while they are mute during the rest of their lives, swans sing beautifully and mournfully just before they die,” says Ben. “Although this isn’t actually true - swans can make a variety of noises throughout their lives - the idea has carried on.” If music isn’t your thing, you could try collating all your family photos in an album or two, so loved ones can reminisce when you’re gone. Or make a scrapbook of memories to pass on when you’ve passed on. Grayson Perry invented a new ritual: he created an ornate clay pot, bespoke to the dying person. The pot was then smashed by the deceased’s loved ones at the funeral. Perhaps “smashing your pot” could become a new euphemism for death!
 
It’s Good To Talk
Let’s keep talking. The more we talk about death, the less it becomes this dreadful, spectral horror. Barbara Stewart runs free “death cafes” in Leeds, which at first might sound a little unnerving. Is it safe to order the soup?! “I totally appreciate the title might put people off,” reassures Barbara. “But they are actually a really safe space, where anyone can come and talk about death, dying, grieving and loss.” The cafes take place all over the city and welcome all sorts of people. During the pandemic, the cafes have taken place on Zoom, but more recently have started again face-to- face. Talking to strangers about death can be really helpful and freeing. “People often say that these are things I can’t talk about with my family,” says Barbara. “There’s a lot of emotional stuff on all sides so it’s easier to talk to people I don’t know as well.” If you have an awkward relationship with your family, it might be useful to rehearse conversations at a death café.

So keep talking, keep planning. And be aware that your ideas may change as you get older. “It’s an on- going conversation,” says Barbara. “What you want may change over time.” Whoever we talk to, whatever our thoughts, remember that everyone has to think about death at some point. Let’s face the music together.
 
Find out much more about death and dying at www.dyingmattersleeds.org
 
Dying Better
During our research, we were intrigued to discover the concept of an “end-of-life doula” who helps people through the last stages of life. Mally Harvey met Emma Clare to find out more.
 
What is an end-of-life doula?
It’s a hard one to answer, not because we don’t know what we do, but because what we do is so flexible and dependant on whom we are working with. We offer practical and emotional support - and sometimes ‘spiritual support’ - to people who have a life-limiting illness. Not just them, but anyone who is around them who is important to them as well. We work with people of all ages and stages of illness. And we don’t have to disappear when someone dies, as we already have a relationship with the family or the friends. We’ll often stay with the person in their grief, or help with practical things like funeral planning.
 
How did you become a doula?
Most people haven’t heard of a doula and if they have, they’ve heard of it in a birth context. I went to Leeds University and my first job after that was in homecare in the community. It was a bit of a shock to me to realise I was working with so many people who were at the end of their life and living at home. Supporting people who were at the end of their life was full of joy and uplifting. There is no right way to die. Some wanted to share stories or pass on a skill; it was such a privilege to be with them at that time. I saw first-hand how difficult it was for people to communicate really important things. Some would have a really clear idea of what they didn’t want to happen. They may not want to go back into hospital. You would have family and friends round them who wanted to help but didn’t know how to open up the conversation and follow their wishes. It made me want to go into a line of work where I could facilitate those conversations and help people have them. I was trained as a health psychologist and I saw the doula course. I got hooked and never looked back.
 
Can death really be joyful and uplifting?
Yes, people (understandably) think that anything to do with death is really morbid and miserable, but it’s not true of everyone. Some people had such a beautiful way about them: they were content, they had lived a life they were happy with, that had meaning. They may have a few things that they needed to tie-up, which I could help them with. The rest of the time they just wanted to concentrate on the things that really mattered, human to human stuff. One was a university professor who had this incredible library; he wanted to talk me through his library, share book recommend ations, and have really deep meaningful life conversations. Another lady wanted to teach me all about her garden. One gentleman had been a professional sportsman and he wanted to teach me chess. It’s all about spending time with people. Wanting to share. The person who is dying leads and I facilitate that. They want to die on their own terms and die as they have lived. Often, a person’s identity gets lost and they become their diagnosis. We want to get to know the person, ask what their life has been like. We ask that question all the time. I always ask, “What really matters to you now.” People can be so emotional when you ask that. They may have been in treatment for a long time and no one has asked them that question. We centre the support on that. We always come back to what is important to that person.
 
Can death ever be funny?
Obviously, there is a lot of emotion, but just because someone is dying, they don’t lose their sense of humour. If people cope with things by laughing about it, they continue to do that. We take our lead from them.
 
It’s not just sitting by the bedside, is it?
We are encouraged to find out what is available locally and how the referral systems work because they are
so different in each place. Self-reflection is very much part of the training as we never know what is coming. The whole emphasis is knowing what you don’t know and knowing where to find that information. I know that doulas have the luxury of time which many of the statutory agencies don’t, so we are very lucky. It’s a proactive role - behind the scenes we are advocating for the person, talking to the GP, getting everyone on the same page, constantly putting it through the filter of is this what the person wants. Sometimes those priorities are not what other people expect. There are no assumptions in end-of-life care.

To find out more about End-of-Life Doulas go to https://eol-doula.uk

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