'I'm fighting to help my husband die'

Carol Conway turns away from her husband, Noel, with tears in her eyes. “It’s hard,” says the 57-year-old, her voice breaking. “I’m going to be in the position of losing the person I love and I’ve been with for all these years. The father of my child. My bedrock, really. I’m going to lose that person, and it’s still difficult now.”

Her 67-year-old husband Noel is dying. In 2014, he was was diagnosed with terminal motor neurone disease (MND), and though he has surpassed doctor’s expectations that he would die within 18 months, his disease has progressed to the point where he relies upon a ventilator to breathe, struggles to talk, cannot stand without support, and needs 24-hour care.

Noel knows he will not make it to the end of the year, and has been spending the last year of his life trying to fight for the right to choose how he dies. With the support of Dignity in Dying, he launched a legal challenge aimed at changing the law on assisted dying so that the terminally ill can decide when and how to end their lives. The case was heard at the Royal Courts of Justice in London this week.

“My family and I have come to accept that I will die,” he explains, from their leafy Shropshire cottage, in the chair where he spends most of his days. “But what I cannot accept is being forced to die either at the hands of MND, or by taking drastic measures to end my own life. I know what awaits me and I want to avoid that. I want to die without suffering and, yes, with a degree of dignity.”

He is not the first MND sufferer to fight for a change in the law on assisted death. The nature of the disease means that by the time the person is nearing the end of their life, they are physically unable to commit suicide. Noel is frank in explaining that he would now need assistance to take his own life – be it at Dignitas in Switzerland (a journey he would, realistically, be unable to make), or at home, where his loved ones could later face prosecution. 

He knows that even if the law did change, it would be far too late for him, meaning his only real option is to let MND take its course, which could mean suffocation or choking to death. “What kind of a choice is that?” he wonders.

The retired lecturer has the full support of his and Carol’s 25-year-old son, Alex, and daughter Ashley, 46, from his first marriage. He struggles to talk about how his condition has impacted his family, particularly his relationship with his only grandchild, three-year-old Joe, born to Carol’s son Terry, 38.

“One of my great regrets is I can’t pick him up,” admits Noel. “All he can do is climb on my lap and play with his cars there. It’s hard. I remember saying I don’t want to wear nappies and all the rest of it. I never wanted to be bedridden.”

At the time of Noel’s diagnosis, he had just retired as a social sciences lecturer, and Carol had reduced her work as an occupational therapy assistant to part-time. The couple had begun planning their retirement, booking a long-awaited cycling trip to China. But when Noel’s condition was confirmed, they were forced to cancel their plans, and enter into a state of uncertainty of not knowing exactly how much longer Noel would be with them. 

“The hardest part is the not knowing,” says Carol from the couple’s bedroom; a room Noel rarely leaves. “In the first six months, I was thinking, ‘Is it this month, next week?’ I’d be in the other room crying my heart out in the morning, because that would be my low time when I was dealing with my demons.”

“Sometimes it would suddenly come over both of us, and we’d both be weeping,” adds Noel, who has removed his ventilator to talk. “It can come over you when you least expect it. It might be outside. In the supermarket.”

Carol nods in agreement: “Or when you see a couple walking hand in hand. Why isn’t that us? The first time I went up the Wrekin alone, I cried all the way to the top and down. Noel and I used to walk it together.”

It was during these first months that Noel “became fairly depressed” and first began discussing assisted suicide. “I’d come home and he’d tell me someone else had gone off to Dignitas,” says Carol with a sigh. 

Yet, over the next year, Noel came to terms with his diagnosis and began to discuss assisted suicide in a more positive way: “I realised it was the right time for him to take some control.”

Their campaign to change the law has had support from thousands across the world, and received more than £90,000 in donations to go towards their legal costs. It has also given the couple the strength to cope with their plight, and in the last year, Noel has found his perspective has changed drastically.

“Even though I’ve been living with it now for two and a half years, there’s a degree of normalisation to life, there has to be. Until now, our perspective was: ‘Look what we’ve lost.’ But paradoxically, the worse it becomes, you think ‘What can I do?’, rather than what can’t I?” 

Not all disability campaigners support his case, with some framing it as an attack on disabled rights, and protesters have even attended his case with papier-maché coffins. “I found this particularly hurtful,” says Noel.

“Members of these groups falsely claim to understand what it is like to be me. But they cannot possibly understand – they are not terminally ill. If my condition were stable and I had more time left, I would be content with my current status. I still have some quality of life left, but not for long. I have only months left to live, and I am likely to endure great suffering and a traumatic death. 

“My legal challenge is strictly about giving terminally ill, mentally competent people like myself choice and control at the end of life. It is not about devaluing or endangering the lives of disabled people – and the overwhelming majority of the public, including disabled people, understand this.”

The devastating situation has had a huge impact on Carol. She has been on unpaid sabbatical now for around a year, and though Noel has a carer and occasionally visits a hospice, it is mainly Carol who takes care of his every need. Throughout our conversation, she fetches him a drink, a sandwich, itches his ear and twice helps readjust him in his chair.

“We’ve been together for a long time, and like most couples you have your ups and downs. We’ve managed to work through them, but this has been the biggest down ever, to say the least,” she says wryly. “I love Noel dearly, but I’m mainly his carer now. It can be very isolating. I feel more like an emotional punchbag sometimes.”

Noel apologises: “I’m much more civil with the carer than with Carol. It’s like trying to teach a relative to drive. You never should try.”

Still, the couple are working through the new challenges ahead of them and adapting. Noel is learning Arabic and French, while writing a book. Carol tries not to think too much about the future. 

“We get on with life as much as we can,” she says. “I’m focusing on staying strong, emotionally and physically, to support Noel. I have to stay strong for both of us.”