Devoted sisters Lauren and Beth have just one wish – that their loving father Tony Nicklinson was dead…
By Eimear O’Hagan & Alice Wright
Like most 20-somethings, sisters Lauren and Beth Nicklinson have dreams. Beth wants to graduate from college next year, while Lauren’s ambition is to run her own public relations agency, and they both want to get married and have families of their own one day.
But when they think of these milestones, there’s one person they don’t want to share them with. Their dad.
There’s been no falling out or bitter family feud. These girls are loving, devoted daughters, but they wish their dad was dead.
Visit their family home in Melksham, Wiltshire, and you’ll come closer to understanding why. Their dad Tony Nicklinson, 56,once a strapping, 6ft 4in rugby player with a voice that could silence a room, is now a frail shell of a man.
He suffered a huge stroke in June 2005 that left him with ‘locked in’ syndrome, which means he can think, hear and feel but is completely paralysed. Unable to speak, he can only communicate by blinking or making slight head movements. He now needs 24-hour care. His dignity is gone. For a family man who was always the life and soul of any party, this is nothing short of torture for him – and his loved ones.
“We know he’d rather be dead than go on like this, and because we love him so much, we want to help him die,” says Lauren, 23, a PR consultant. “If I was in his shoes, I’d want to die, too.”
Tony’s vibrant life, spent travelling the world in his job as an engineer, being a hands-on family man and always the last one standing at any party, has now been reduced to a mere existence.
Days and nights are spent in his adapted ground-floor bedroom watching war documentaries. The old Tony never had the time to watch TV. In an attempt to keep his brain busy he is trying to write his memoirs on a specially adapted computer, which responds to his eye movements.
The walls of the family’s home are dotted with photos. Tony and his wife Jane on their wedding day in 1986, the family at a New Year’s Eve party in 2004, and numerous pictures of Tony with Beth and Lauren. Like many young girls, their dad was a hero, a source of endless love and fun, whether it was getting soaked white-water rafting on holiday in Thailand or asking his advice on school work. Their dad was their rock.
“He was our everything. A real-life action man and our best friend,” says Lauren, now 23. “There was nothing Dad couldn’t do. I loved being with him. As a little girl I’d sneak out of bed when he got home from work to sit on his knee while he ate dinner.
“We’d talk about school, then he’d kiss me goodnight and take me back up to bed. The life he has now is no life at all. To communicate, he looks at letters on a perspex board which we put into words. It’s agonisingly slow. It’s hell for him.”
As we talk about their father, the girls glance at each other for support. It’s clear they’re both heartbroken.
“Some people may say he’s selfish wanting to leave his family behind, but anyone who knew Dad before his stroke would understand why he wants to be released from this life,” adds Beth, 21.
“He was always the leader of our family,” says Lauren. “He loved taking care of us. Just months before his stroke, it was Dad I sat down with to pore over university prospectuses and fill out college applications.
“Now he’s completely dependent on other people. His pride is gone – there’s nothing dignified about being spoon-fed dinner by your wife.”
Throughout the family’s five-year ordeal, the girls have supported their mum Jane, 55, a former nurse, who has devoted herself to caring for Tony.
Watching their parents’ relationship change has been extremely difficult. “They had a traditional relationship – he was the head of the family and Mum preferred to stay in the background,” says Beth. “Now she has to do everything. They’re soulmates and have been together for 26 years, after meeting on a blind date while both working in Dubai.
“Mum’s frightened of life without him. We’ve found her in tears looking at photos of Dad before the stroke. It’s been so hard for her to see the man she loves reduced to a shadow of himself.”
Tony decided he wanted to die shortly after the stroke that left himparalysed. And he wanted the woman he loved to help him. His wife, Jane.
Just five months after his stroke, when he had learnt how to communicate via his perspex board, one of the first messages Tony spelled out was: “I want to die.” The family were devastated.
“By then, he knew he was never going to fully recover. He felt his life was hopeless,” says Lauren. “It was terrible to know your dad wanted to die, but none of us was shocked. Knowing him, we knew he’d never accept what his life had become. He did agree to wait a few years to see if he could adapt to his new life, but he’s never changed his mind.”
However, under current laws, Jane could be charged with murder and receive a life sentence in prison if, following his wishes, she helped her husband die.
So, as a final act of love and protection, Tony, with the help of his family, has launched a landmark legal challenge to grant Jane immunity if she were to help him die. He claims that the current law is breaching his human rights, and Lauren and Beth fully support their dad.
“At the moment, he has no control over his life. So, being able to choose when and how he dies, and to have his family and friends with him, would give him some control back,” says Lauren, her voice cracking with emotion.
“Mum’s said in the past that although she supports Dad, if it was up to her she would keep him alive as long as possible. She loves him too much to say goodbye.
“But for Beth and I, if we had to choose between having him here the way he is or letting him go, we’d rather he died. Knowing how unhappy he is, it would be selfish of us not to.”
Both sisters remember the day their perfect world changed forever. The girls grew up in Malaysia, Hong Kong and Abu Dhabi, in the United Arab Emirates, going wherever their dad’s job took them. In 2000, they settled in the Emirate state of Sharjah. Life was good, and they were active members of the ex-pat community. After days at the beach and nights in watching DVDs, nothing could have prepared this very normal, happy family for the tragedy that was about to strike.
In June 2005, Tony, then 51, flew to Athens on business, kissing his daughters and wife goodbye like he’d done hundreds of times before. Just 24 hours later, though, he was struck down by a stroke and rushed to intensive care.
“The phone rang at 9.30pm that evening and Mum took the call in the kitchen. When she came out she was deathly white and close to tears,” remembers Lauren. “She said Dad had suffered a stroke in his hotel room and we might lose him. I told Beth and we both sat with Mum. We were so shocked, we couldn’t cry. The thought of losing Dad was impossible to take in.”
Jane flew to Athens the next day. The girls were in the middle of school exams so Lauren flew out 10 days later, leaving Beth, then 16, with family friends.
“Mum told us Dad was unconscious and that doctors didn’t know if he was going to live,” says Lauren. “But nothing could have prepared me for what I saw when I visited him in hospital.
“There were tubes all over his body, his skin was yellow and he was swollen from all the drugs. His eyes were closed… he looked dead.
“I ran from the room crying. When Mum found me, she told me I had to be strong and say goodbye as we didn’t know how long Dad had left.
“I sat by his bed that afternoon, holding his limp hand – the same hand I used to hold to cross the road as a little girl – and told him I loved him, wiping away my tears as I remembered what an amazing dad he’d been to me and Beth.
“I couldn’t believe we were going to lose him,” says Lauren. “But knowing what I know now, I wish he had died there and then. And so does he.”
Two months after the stroke, Tony was flown back to Britain. Jane, Beth and Lauren had already left their rented house in Sharjah and returned to the UK to be close to family and friends for support.
After months of treatment and assessment, Tony was diagnosed with locked-in syndrome. He spent the next two years in hospitals and rehab centres. Finally, in December 2007, he was able to return to the family home.
His life has since become a routine of being washed and dressed by a carer and fed liquidised food.
Lauren, who now lives and works in Preston, Lancashire, visits regularly, while Beth lives at home while she’s at college studying animal management.
“When Dad came home, I felt awkward around him,” admits Beth. “Before, when I came in from school, I’d have given him a hug and told him all about my day. But I was afraid to touch him in case I hurt him. Worse is not being able to
chat. To go from the guy who always had to have the last word, to being mute… it’s like a living hell.”
The last goodbye
Beth says that she no longer tells her dad so much about her life. “He gets upset – he feels shut out of it all,” she explains. “When Lauren and I got our first cars last year, we knew Dad was devastated he wasn’t there to help pick them. Our lives are passing him by.”
Lauren is also aware of her dad missing out. “Graduating from university with a degree in PR and journalism in 2008, there was only one face I wanted to see in the audience,” she says. “My dad’s. But he couldn’t travel and Mum had to stay with him, so my boyfriend Tom, 25, and Beth came to support me instead.”
The girls’ faces are etched with pain when talking about what Tony is like now. “He’s still our dad, but he’s only here in body, the light inside him has gone,” says Beth. “When he dies it will break our hearts. But in a way, we’ve already grieved.”
Their mum has admitted even if Tony’s legal bid is successful she’s not sure she could kill the only man she’s ever loved. “She doesn’t want to live knowing she killed her husband, even if it’s what he wants,” says Beth. “It would be better if a doctor could give him a sedative and a lethal injection, and we could all be with him. Then none of us would have to bear the burden.”
While dying at the Swiss euthanasia clinic Dignitas would be an option for Tony, he says he doesn’t want to go abroad to die. “He wants to be in his home, with his family, where he feels safe and comfortable. There is also the possibility that whoever takes him there could be prosecuted,” says Lauren.
Last month, Jane gave evidence to the Commission On Assisted Dying, an independent inquiry into whether UK law on assisted dying needs to change, and read out a statement from Tony.
He said in 2007 that he’d wished for a terminal illness and had considered starving himself to death, but didn’t want to put his family through that.
Tony’s determination to die is unwavering, as is his family’s support. Lauren and Beth have vowed to fight to say goodbye to their father forever. Lauren says: “We love him so much, it’s the last thing we can do for him.”