Demystifying Death Week - are we ready to talk about mortality? - Gaby Soutar

“People usually want to do the right thing when someone they know is affected by serious illness, death or grief,” says Rebecca Patterson, director of GLGDGG. “But often they can feel awkward offering help, or worry about making things worse. People can have questions about serious illness or dying. But often they don’t know who to ask. Demystifying Death Week is helping to change that.”

There are more than 50 events planned, including the screening of award-winning documentary Much Ado About Dying. Then there are the cafe events in Edinburgh (May 9) and Glasgow (May 2, 10 and 12), Lochgilphead (May 8) and online (May 10).

The format is unstructured – you can go alone or with pals, and talk to other participants. Just don’t turn up in a black veil, carrying an Edgar Allan Poe. It’s not to be confused with a Goth convention.

This year’s event seems particularly timely, as there’s so much discussion around assisted dying, thanks in part to the campaigning of Esther Rantzen, who has signed up to Dignitas and is suffering from stage four lung cancer. In Westminster, this week, the Assisted Dying Bill was debated, after 200,000 people signed Rantzen’s Dignity in Dying petition. In Scotland, we’re moving towards potential change, with the formal introduction of the Assisted Dying for Terminally Ill Adults Bill.

Whatever your stance on that subject, the conversation appears to be more frank than usual. Not just about assisted dying, but the nitty gritty of our final days.

I will be doing my bit by permanently avoiding the euphemism ‘passed on’, as if someone has missed their bus stop. That phrase only serves to minimise the fact that a human has ceased existing. Use the proper word.

As they say, death is the only certainty in life, along with taxes, though it turns out there is no graveyard equivalent of an offshore account.

In my household, we are not a talking-about-death sort of family. I am still convinced that it will not apply to me. Either I’ll completely dodge it, or there will be an affordable cryogenics programme launched while I’m still in my, ahem, prime.

Anyway, like Woody Allen, I’m not scared of dying, I just don’t want to be there when it happens.

Funeral-wise, I definitely want to go the David Bowie route, with a direct cremation. Either that, or bury me in the woods by Glenashdale Falls on the Isle of Arran. I’ll make sure that the wild garlic is extra vibrant that year.

I definitely don’t want anyone to have to foot the bill for vol au vents, a cortege and flowers, with GABY spelt out in white gerberas. Spend the money on visiting a good restaurant instead.

My mum turned 88 this year – the age my dad was, when he died of pneumonia – and, apart from vague practical chat, I’m ashamed to say that we don’t mention The Inevitable End.

I think she’s quite open to discussing it, but I tend to selfishly change the subject if it’s raised. It’s hard though, when your instinct is to reassure someone with the usual platitudes and tell them that there’s no way it’s going to happen and that they’ll be OK.

Anyway, as she’s survived bouts of sepsis, cancer and diabetes, among other things, I feel as if she’s indestructible. I’m holding out for her to make 110.

I certainly don’t know what all of her final wishes are. We’ve briefly spoken about funerals, and she’s expressed preferences for plumed horses and a wake at Prestonfield House Hotel.

When it comes to end-of-life care, that’s taboo, maybe for both of us.

I wish we’d talked about that kind of thing with dad. He didn’t make any funeral plans. That was fine. We knew he wouldn’t want a big shindig. He wasn’t Sean McGowan. Johnny Depp wasn’t going to do the eulogy.

However, there weren’t any death plans either, which might be surprising, for a GP.

Towards the very end, he did communicate with the intensive care staff about what he wanted. They picked up on his subtle signs. No more ventilators. I still feel guilty about not being there, the moment that he died (NOT passed on). We’d gone home to get some sleep. I suppose we didn’t think time was going to run out.

The nurse said those who’re dying will often hold on until their loved ones have left the room. And that’s what happened. We got a phone call in the wee small hours.

Afterwards, I wanted to talk about death an awful lot. Your brain struggles to grasp that someone can be there, then gone. It feels as if they’re just out of sight, if you knew where to look.

At that point, I would’ve visited one of the Scottish Death Cafes, had they been running. They could also have been a useful resource when people close to me were grieving.

“We’re often told that death is a taboo,” says Patterson. “But surveys show that in Scotland most people are actually fairly comfortable talking about death. Perhaps the right opportunities just don’t present themselves. Demystifying Death Week is a chance to open up about death, air these topics and become a bit better at supporting each other through these difficult times”.

www.goodlifedeathgrief.org.uk