'Dementia is a disease where the person dies before they have physically gone... John and I understand what it is to lose people we loved so much'
The Longest Farewell is an apt title for interior designer Nula Suchet's candid new book about living with the man she loved after he was diagnosed with Pick's Disease. Now married to former newsreader John Suchet, she tells John Meagher about coping with loss and finding love again
It happens by stealth, often over a period of years, and it causes untold anguish to both the victim and their loved ones. It is dementia - a disease that is still not talked of enough - and it does not discriminate.
There is no cure and early detection tends not to make the blind bit of difference. Instead, those with dementia - and the family members and friends who care for them - face a cruel, fearful future where its grip becomes ever tighter. This is not a disease with a happy ending.
Dementia is something with which artist and interior designer Nula Suchet is all too familiar. Her filmmaker husband, James Black, was diagnosed with dementia in the prime of his life, at 57. It was the beginning of the end of the once wonderful existence they had shared.
Nula - who is married to the retired ITV newsreader John Suchet - has written a book about her life with James and about how Pick's Disease (the rare variant of dementia that he had) crept up on them and wreaked carnage.
Its title - The Longest Farewell - is apt and even though there are several very happy moments in the book, it makes for a sobering read. Few of us think about dementia until it happens to us or to someone close to us, and once you've finished Nula Suchet's memoir you wouldn't wish it on anyone.
"It's an alien," she says. "It just creeps in silently. One little thing happens and then another and you don't realise what it is at the time. James was always a bit quirky and outside the norm and I put it down to that. Then, when little odd things became more common, I thought it was stress - he'd been writing and directing a lot."
By the time it was diagnosed, James had deteriorated markedly. But it was only the start. "It takes everything from you, including your speech - and James had the most wonderful (faculty with) language."
James Black was clearly the love of her life. "My world began when I met him," she says. "He was a strikingly handsome man. He was six-foot-two with the loveliest green eyes. He was such a caring, emotional human being. I'll never meet his like again."
Born Fionnula Mary Cecilia Murray in Dublin 70 years ago, she spent part of her early life on a farm near Clonaslee, Co Laois. But the young Fionnula hated the strictness of her upbringing. She went to a boarding school up the road in Mountrath and despised the experience. "It was the late Fifties, early Sixties and it was awful - so repressed.
"I was there until I was 16 and then two nuns came by one day from England to ask if anyone would like to enter a convent and go and teach in Africa, and I thought it had to be better than an Irish boarding school. I just rebelled against it all inside - this was my escape."
She emigrated to England with "10 shillings and a pot of jam" in her pocket and spent two happy years in the convent school, although hopes the sisters may have had that she would become a nun were dashed.
"Religion didn't really answer any of the questions I had," she says. "I had the most wonderful education with wonderful nuns who were much more outgoing than the Irish nuns I'd encountered. These nuns were quite happy for you to read Edna O'Brien and DH Lawrence and all the literature that I was drawn to."
The London of the mid-Sixties could hardly have been different from the place she had left behind, despite dark warnings from a family member that the city would be a hellish place. "I just loved the atmosphere and the coffee shops and the mini skirts," she says. "I ended up going to art school, which was my dream."
She shortened her name to Nula because she found few could get their heads around 'Fionnula' and, with anti-Irish sentiment growing, she learned to speak with an English accent. Today, there's only a faint trace of an Irish brogue in her speech.
She married early, to a medic, but it didn't last - and it's a part of her life she doesn't like to dwell on now. Nula was in her 30s when she met James Black and she was smitten.
"He had been brought up in the Falls Road in Belfast and went to the same school that Gerry Adams attended. Their father took them to England when James was about 15. He had a much more secure background than I did. They were all fiercely bright and James ended up getting a job in the BBC as a researcher and then a cameraman and then a director."
She says they were attracted to each other's creativity and they travelled the world together. "Both of us being Irish in England united us too," she says. "We just understood each other." They would spend much of the latter years of their relationship together in Connemara.
Nula has lucid memories of the first time she introduced James to her family. "When I brought him home to meet my mother she said to him, 'What's a good looking man like you doing with Fionnula?' It was typical of my mother. We were brought up with no confidence."
If such 'tough love' bothered her at the time, she could look instead to a happy life with James. They must have made a striking couple - both attractive, bright and well-travelled. And just as James' career was blossoming, so too, was Nula's. Her interior design business took her all over the world and into the palaces of the royal family. It was a gilded life.
And then, when they were easing into their 50s - and to a quieter life in Connemara - dementia struck. "Somebody said to me, don't tell anyone it's dementia. Say it's a brain tumour. I felt such shame. My family sort of stepped away from me."
She looked after him for five years at home. It was a tough time. They had to sell their Georgian home in the west of Ireland and move to Dublin where a friend helped them with a flat. "Our finances dwindled. James wasn't working. I had savings in Anglo-Irish bank which I lost. There was nothing out there - no help as we were middle class."
The book does not shirk from detail about how their marriage suffered and how Nula's sense of self plummeted. "He was just impossible in the end. Finally, his wonderful sister Maureen found this (care) home in Hertfordshire - but the fees were enormous, almost £8,000 a month, so you can imagine how quickly that went.
"If you have cancer," she adds, "you are supported financially in England. With dementia, we had to pay for everything, including the drugs. Dementia just kills families."
It was at the care home that she met John Suchet. He was going through the same sort of horror. His wife, Bonnie, also had dementia. "James was in there for two years and I never met him, even though I'd be over a lot. I'd drive from Dublin and would stay in a hotel nearby. I got to know Bonnie first, because she was next door to James. But I wasn't coping - I'd leave to drive back to Dublin, get the boat, and I'd be crying all the way back."
As she and James didn't have children, it was a period of her life where she felt very alone. It was the manager of the hospice that put her in touch with John. "She said there was someone there who wasn't coping well and she thought we'd get on. You see, for most people, loved ones with dementia are their parent - they're elderly people, not their spouse."
The two met for lunch and Nula - ever frank - says they didn't get on. "It was a disaster. Then, we went to Vienna for a weekend and that was a disaster too. And we tried a holiday and that wasn't much better.
"The whole time the care home people were saying to us, 'You must move on - John and Bonnie are gone. They're never coming back again'. And, it's true - they didn't know us any more. This is a disease where the person you love dies before they have physically gone. They're still the people you love, but you cannot connect with them. I'd hug James but it was like a wall - there was no connection."
James died in late 2014 - 10 years after diagnosis. Nula says her final photos of him show him to be so skeletal the publishers advised her not to print them in her book. "It was a horrible, undignified death," she says. "Utterly heartbreaking."
Bonnie Suchet died just five months later. She has also become the subject of a book written by her husband which documents the nightmare of dementia.
While they may not have got on at the start, Nula could see that nobody knew quite what she had gone through as much as John did - and vice-versa. They married in 2016 in a tiny ceremony whose guests included John's younger brother David, famed for his TV portrayals of Agatha Christie's Poirot.
"John is such a lovely man," she says. "He's perfect for me because I'm older and wiser and we understand each other and what it is to lose people we loved so much. My whole life has turned around. I'm in a good place - I still have my little flat outside of London which I can hop up and down to. And he has his lovely flat on the river here (London). John is a friend that I can go places with and share a life with."
She's no stranger to Ireland. She is devoted to her 93-year-old aunt and godmother Ann Rodgers, who lives in Dalkey. "She's always had such class about her - she's not judgemental at all, and has such a broad mind. She's still interested in London and what the fashions are like."
Nula owns the rights to Against the Tide, the acclaimed memoir of Noel Browne, whose Mother and Child Scheme in Fifties Ireland was revolutionary. She hopes a feature film can be made - it's what James had planned to do shortly before his dementia diagnosis - and she is excited about the forthcoming documentary from Irish film-maker Alan Gilsenan.
And it may not be the only film that she has a vested interest in. Fox Searchlight Pictures have bought the rights to her book on James' dementia. Philippa Lowthorpe, whose recent credits include Netflix's The Crown, has been earmarked to direct. "She's the daughter-in-law of Ken Loach," Nula says. "She'd be perfect.
"It's all about honouring James' legacy," she says. "He was such a great man and I want his story told."
The Longest Farewell: James, Dementia and Me, by Nula Suchet, published by Seren, £12.99, is out now