If Dad wants to end his life, it's his choice. I'll support him

Rhianna Pratchett was in a taxi in a North London traffic jam when her father phoned. The date, she recalls, was December 6, 2007, and she thinks she was coming back from the gym.
The conversation which followed was so shocking that, five years on, it remains the most traumatic memory of her life.
Unknown to his only child, author Sir Terry Pratchett had just been having hospital tests after finding difficulty typing. ‘From the second I answered his call, the detail of everything I’d done that day — all the hours minutes and seconds preceding that conversation — have been wiped from my mind,’ says Rhianna, 36.

Support: Rhianna believes her father Sir Terry Pratchett is right to fight for assisted death

‘Instead, all I remember was the taxi driver complaining about the rush-hour traffic while, at the other end of the phone, my beloved Dad was telling me, quite calmly and devoid of anger or self-pity, that he’d been diagnosed with Alzheimer’s.

 

‘The whole thing is a bit of a blur. He’d been having tests, he said. It was a rare form which affects spatial awareness. “We’re putting out a Press release next week,” he said. “I wanted you to know beforehand.”
‘I went into shock. I’d had no idea anything was wrong. At that moment, the taxi driver turned and snapped at me — he was irritated the journey had got him stuck in a jam — and I burst into floods of tears and said: “My Dad’s just been diagnosed with Alzheimer’s.” The driver just shrugged.
‘I could hardly breathe. All I wanted to do was just get out of that car and back to my flat. I was flying to the U.S. the next day to work for two weeks and I remember telling Dad that I’d cancel it, but he told me there was no point. “There’s nothing you can do about it,” he said. “If you stay, it isn’t going to change anything.” ’

'Dad calls it 'The End Game'. It's his life, his death and his decision'

A week later, Sir Terry’s office released the Press statement, and his battle with Alzheimer’s, having been diagnosed at the age of 59, made headline news around the globe.
As the second-bestselling author in the UK (behind J.K. Rowling), Sir Terry has a cult following of millions. His fans reacted with genuine emotion — and many contacted Rhianna directly.
‘A week after he told me, the story broke and headlines started appearing,’ she says. ‘People emailed from all over the world, expressing their shock and upset or offering support. The news your parent is sick is devastating in itself, but having the whole world know is surreal.’
As soon as she returned from the States, she travelled straight to the idyllic manor house in a quiet Wiltshire village where Sir Terry lives with her mother, Lyn.
‘I’d bought Dad a glowing light which projected constellations onto the ceiling and that evening we sat on the landing, each with a small bottle of cider, staring up at the stars and the beautiful blue nebula in the middle.
‘We spent hours like that, just chatting about the future. I will never forget that evening or how cathartic it was.’
Sir Terry used to tell his daughter when she was young that ‘We Pratchetts are a feisty bunch’, and it was with his typical gusto and candid  honesty that he now began to speak out publicly about Alzheimer’s — becoming a symbol of hope for millions of others fighting dementia.
In recent years, he has been a vocal advocate of assisted dying being legalised and regulated in the UK, in the same way it is in the Netherlands,  Belgium, Switzerland and certain U.S. states. In private, too, Sir Terry has discussed his plans with his beloved wife and daughter.
Rhianna says: ‘Dad believes, as do I, that people who have a hugely debilitating and ultimately fatal illness should be able to make the decision to end their lives when they wish, rather than suffer.

Close: Rhianna with Terry when she was a teenager

‘Of course, there needs to be some legal framework or regulations that can judge them to be of sound mind when they make this choice, and ensure that they’re not being coerced.
‘Dad and I have talked about assisted dying and, while not an easy subject to discuss, it is an important one.
‘Dad calls it “The End Game”. No definite decisions have been made about it but he has my full support for whatever he decides to do. It is his life, his death and his choice.’
Sir Terry’s future remains uncertain, but Rhianna is unfailingly upbeat in the face of what many would find a terrifyingly bleak outlook. Softly-spoken, self-effacing and private, she tries to pinpoint the positive. ‘Dad’s illness has made us much closer. My mother has been amazingly upbeat and supportive. When there are just the three of you, you get on with it.
‘The type of Alzheimer’s Dad has is rare — posterior cortical atrophy or PCA — and it affects his spatial awareness and the way he judges distance. His first symptoms were erratic typing and spelling, but to talk to him, you’d never know there was a problem. He’s very astute and snazzy to speak to, but he can he see an object one minute and not the next.

'Doctors believe he had Alzheimer's for a while before he was diagnosed, which means he probably wrote two bestsellers before his illness became official'

‘We spent Christmas together, and maybe because I’m conscious that Alzheimer’s can strip you of your most precious memories, I bought Dad things he’d cherish. I framed some photographs of us together, and bought him a hamper filled with some of the foods he’s always loved: liquorice, dried mango, wasabi peas and marzipan. Dad also loves birds, so I bought him a  whistle which sounds like an owl.’
Rhianna enjoyed an idyllic — albeit unconventional — childhood. She recalls: ‘We lived in a pretty pink  cottage in Somerset. Having no siblings, I spent my time either playing with the hens in the front garden or milking the goats in the back.
‘My very earliest memories are playing computer games with him. He had a Sinclair ZX81 computer console, and a game with an animated adventurer. Dad tells me I was really scared of it, until I realised the warrior had a little sword to defend himself.
‘Dad loved computer games and I would sit beside him for hours with graph paper, drawing out plans to try and forecast the moves he should make, while he worked the computer controller.
‘Funnily enough, Mum was the real storyteller. She’d invent wonderful  mystical lands to distract me from  having my hair washed.
‘When I was really young, Dad wasn’t that well known. I don’t remember when I realised he was a writer, but I do remember him leaving his full-time job at the Central Electrical Generating Board to concentrate on books. His leaving present was a clock, somehow driven by the acid from lemons, and I was more impressed by the clock than the fact that Dad was  now a successful author.
‘Like his own father and uncle, Dad was creative and made me a toy Aga from wood, a market stall and a beehive, complete with a little toy honeycomb. I loved the Swedish Moomins comic strip, so Dad crafted a 4ft-long Moomin valley from papier-mache.

Proud: Rhianna thinks her father is brave and inspirational

‘It was important to him that I experienced life, and he’d sometimes wake me up in the middle of the night to take me outside and see a glow worm or to watch Halley’s Comet.
‘Because I once became so distraught watching the film Watership Down, my parents were happier to let me watch action adventures featuring humans and warriors, rather than cute animals. So while other children sat down in front of Disney videos, I’d be happily settling down to enjoy Conan The Barbarian, The Terminator and Aliens.
‘The stories and films I liked often had very strong female protagonists, and I remember really wanting to grow up as a strong woman, just like them.
‘One of the characters in my father’s books was based on me — a girl called Esk in the book Equal Rites. I heard it read aloud on Woman’s Hour, and taped it so I could play it again. I felt incredibly proud to think that fictional girl was, in fact, me.’
At 16, Rhianna was sent to top public school Millfield as a boarder, while her parents moved to a manor house in Wiltshire. A slightly dreamy and kooky child, she was an obvious target for bullies, but says: ‘I’d been brought up to be fairly robust, so I didn’t take it too personally. I threw myself into new opportunities, like archery — because that’s the sort of thing you do at public school.
‘I wasn’t happy in my first year, but in the second, Dad came to speak at the school and everything changed. The other children obviously thought he was cool and the teasing ended overnight.’
Her own pride in her father shines through every word. ‘Anyone who has to deal with an illness in the family feels an occasional sense of anger of helplessness,’ she says. ‘But Dad handles it so well and he’s used it to highlight awareness of Alzheimer’s as a disease.

World beater
Terry Pratchett was the UK’s best-selling author of the Nineties. He has sold more than 70m books worldwide in 37 languages

‘He’s done something very brave and significant to help other sufferers. He is still writing, and that keeps him happy. Doctors believe he had Alzheimer’s for a while before he was diagnosed, which means he probably wrote two bestsellers before his illness became official.
‘He’s certainly written another two since he was diagnosed and although he can’t type any more, voice-activated technology can do that for him, and he’s enjoying saying his stories aloud. It’s hard, and we take one day at a time — but as long as he’s content, we’re all happy.’
Rhianna works as a freelance game designer and scriptwriter — her latest project has been the script and backstory to the new Tomb Raider game — and recently began to work with her father for the first time.
Not writing novels, she says with a smile — ‘Pratchett senior’s got that one sewn up’ — but in a production company. It will oversee adaptations and screen off-spins of Pratchett’s work.
The cruel irony is that while her work allows her to breathe life and new beginnings into her on-screen characters,  Rhianna cannot breathe new life into the father she adores. Instead, as she says: ‘I can only watch him — and be proud.’

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