Online exclusive
Death is a natural disaster that awaits us all, says US palliative care specialist Dr Ira Byock who advocates for a peaceful, rather than prolonged, end to life. His views featured in A Joyful End, which you can read here. Now four kiwis who work with the dead and dying tell listener.co.nz how their outlook has changed through working with the dead and dying.
‘Tis impossible to be sure of anything but death and taxes, wrote Christopher Bullock in 1716′s The Cobbler of Preston. Since then, it’s become a well-known idiom but talk to those who work with the dead and dying, and they might tell you that you can add to that list of certainties regrets and possibly secrets. Here, four people who care for those at the end of their lives or their families, share what working with the dead and dying has taught them about living.
Hospice NZ chief executive Wayne Naylor
“One of the very first experiences I had of someone dying was when I was at a student nurse at Ōamaru Hospital. I went back to Dunedin for the weekend and when I came back, this patient was no longer in the room. I thought she’d been transferred or gone home because no one told me she’d actually died.
I’d looked after her for a whole week and it was a strange feeling when I learned she had died. Somewhere during training, one of our tutors said they always opened a window to let the person’s spirit out so I found myself opening the window.
One of the things I’ve learned is that people who are dying are still people who are still living so they need to be treated like that. I’ve had the privilege of taking patients to an annual track day run by the Race4Life Trust at Hampton Downs in the Waikato.
I’d drive them up in a mini-van from Hospice Waikato; family usually came too. It was just an incredible day of people doing amazing things like riding in racing cars or luxury cars, going in trucks or on motorbikes. They were making the most of it because they were still living.
I think it’s important to make sure you’re prepared for when you die, so don’t put off things like arranging an EPOA (Enduring Power of Attorney), have an advance care plan, get your will done. I’ve seen situations where someone has been dying for weeks, but as their death comes closer it’s still a surprise to them and their loved ones, and suddenly you’ve got social workers running around trying to organise a will.
Something that a lot of people who are dying want to do is to resolve family issues, longstanding issues, make up for past hurts, forgive people. There is an incredibly insightful book by Ira Byock called The Four Things That Matter Most; the first two are “please forgive me” and “I forgive you”, and that can be a really important thing for people to do, to get some peace. The other two are “thank you” and “I love you”.
The other thing that I’ve learned, through being involved in some not great deaths, is that you don’t have to stay alive at all costs. There are some people I’ve seen who choose all sorts of treatments and interventions, which become ever more burdensome, because they’re trying to stay alive for their families, and because that is what our society and health system promotes. But if it’s causing you further pain and you don’t want to go on, then you may have to be prepared to have some difficult conversations.”
Funeral director Wendy Bygrave
“What I’ve learned is pretty simple. You come into the world with nothing and you leave the same way, but it’s what you do in the middle that counts. When you think of the world, life and the bigger extension of that, we’re only here for a blip.
But it blows my mind when I hear the stories of some people, and what they’ve done with their time. Where they’ve come from, what they’ve gone through, their struggles, their offerings, what they’ve given and what they’ve taken from the world.
The amount of history some people hold is amazing. You might see a little old man walking down the road and have no idea that, for example, he was once a fighter pilot who fought for his country. Or someone who was a school principal or teacher for decades and made a positive difference to the lives of hundreds, thousands, of young people.
So talk to people when they’re alive. Don’t wait until they’re dead to learn this and remember them by. Talk to them, talk about them.
I’m in my late 50s now and looking forward to retirement, so I’m starting to think more about the experiences I commonly see or hear through my work. One of the biggest things is “just”: “We’d just retired and we’re about to on a trip...” “We’d just finished paying off the mortgage...” “We’d just reached the point in life where we wanted to be...” And then something has happened.
We’re all constantly striving and living for a future that might not go the way we’re planning. It means trying to live more in the moment, to stop and enjoy what you’ve got and not what you want to have. Happiness is about enjoying what you have today, not what’s about to come.
That’s easy to say, though. You have to work hard to make the theory your reality so I try to stop, appreciate, enjoy and be grateful and happy with what I have: My health, my son and our home, my partner and my family and friends. I think the majority of us know that’s what we should be doing – how we should be living – but they get busy in their jobs and life can be tough. But every day, my job reminds me of it – I get it on a daily basis.
A funeral has two parts to it. One, it’s so we can respect the dead and dispose of their body with dignity and lawfully, but it’s also for the living to say goodbye, to let that person go and start to reintegrate back into society without that person in their physical life. Grief is a huge part of everybody’s life and we should talk about that, and accept it, more.
Knowing what the person who has died wanted can make grieving easier so I think it’s important to plan ahead, to have your loved ones know, for example, whether you want to be buried or cremated and record your funeral wishes.
Coffin confessor Bill Edgar
Contracted by those nearing death, Queenslander Bill Edgar will, when the time comes, arrive at their funeral to share with mourners a message from the recently departed. It might be the revelation of a long-held secret or a last wish to tell someone what the deceased really thought of them but never had the courage to share in life. It might be a message of love, a last request of your loved ones or a gift for them.
Edgar, who charges clients $AU10,000 for the service, says he’s even been asked to ensure there’s a fully charged mobile phone in the coffin with them or, on a significant anniversary, deliver something meaningful to the living.
“For me, my work has done a couple of things. First off, I’ve become immune to death. In other words, I’m prepared for it; I’m very prepared for it. I don’t mean just mine because that extends to loved ones, too. I’m not saying that I am not going to grieve and be upset and all that. Now I’ve accepted that death is inevitable, it’s going to happen and there’s nothing I can do to stop it.
Because of that, it’s sort of made me live a little bit easier and better. I “decluttered” everything; I got rid of all the bullshit – the stuff and people – that I didn’t need. I don’t want to live and just die. I want to die living.
I’ve heard a lot of stories that make me think we need to talk more. I noticed it again just a couple of days ago when a woman came to me and said that both her parents had died within four weeks of each other, and she loved them and wanted to do the right thing by them, but she didn’t know whether they should be buried or cremated because they’d never had that conversation.
Then there was one woman who had been married for 40-odd years but had had the same best friend since primary school. She confessed to having been in love with this friend but feeling, because of societal pressure, that she had to get married and have children. After the funeral, her best friend came to see me and said that she felt exactly the same way but could never bring herself to say it, either.
I’ve heard stories like those so often. I think we do need to talk more about this stuff so, in one way, I guess I’m really happy that I’ve created something and I’ve got the world talking.”
The Afterlife Confessional by Bill Edgar (Penguin, $40) is out now.
Writer, weaver & archivist Flora Feltham
“I guess the difference between me and the others interviewed here is that the people I’m working with are long gone.
Archives are full of unique and unpublished material, the stuff of ordinary – and non-ordinary – people’s lives. When I did a university paper on archiving, I was entranced but I can’t tell you exactly why. Maybe it’s about it being so humane, so tender and so close to ordinary people’s lives.
But it can also be hilariously pendantic: one day, we had an entire lecture on different types of filing cabinets. So, perhaps archiving marries the twin impulses in me – a fascination with the mysticism of humanity and humanism, but also being a real stickler for the rules.
Sometimes you meet people’s families who are donating material to the archives, the descendants of the people whose lives you are being entrusted with. Then you’re doubly invited into the life of a person; they might have been alive in the 1890s, and you’re reading their diary from then, but then you meet their great-great-granddaughter. I see it as being in a privileged and honoured position to be caring for people’s ancestors.
When I first started, sometimes I felt quite sad because I would be working with a person’s entire personal archive and it might be two photograph albums. I’d think, “This person lived a whole life and all they’ve left is two photograph albums?”
But the longer I did the work, I started to realise how lucky anybody is to have a life that leaves behind two whole photograph albums. Lives can be short, likely to be forgotten. That’s an incredibly humbling thought.
You start to see commonalities between your life and those who have come before. In my book, Bad Archive, there’s an essay about a young girl who’s sent away to England to find a husband. It was to try and distract her from the fact that she fell in love with somebody in Christchurch who she wasn’t allowed to fall in love with.
In her diary – and this is 1893 - she’s writing his name in code. I was reminded of all the times in my diaries when I wrote about a boy and gave him a silly nickname. I just thought, “My god, between 1893 and 2003, teenage girls haven’t really changed.” It’s comforting because you just start to see that everybody, no matter who they are, is concerned with the same things, like love, belonging, connection, home, family.
I think as well for me, there’s something about spending so much time in the past that teaches me how to be accountable in the present. You start to think about the impact of your actions and ask, ‘Who will I be as an ancestor?’”
Bad Archive by Flora Feltham (Te Herenga Waka University Press, $35.00) is out now.
