Jane Nicklinson: 'Five years after my husband died, I have my life back'
When Jane Nicklinson’s husband died five years ago today, her grief was tinged with relief. “It was what he wanted, so I was thankful it was over for him,” explains Jane, now 61. “In a way, we were relieved when it happened. We really lost him back in 2005.”
Her husband Tony Nicklinson suffered from locked-in syndrome, ever since a stroke in 2005 left him paralysed from the neck downwards. He was unable to speak or move any part of his body apart from his head and eyes, meaning his only form of communication was via a computer system.
The last seven years of the civil engineer’s life were spent at the family home in Wiltshire, being cared for by his wife Jane and his teenage daughters Lauren and Beth. But Tony also became the face of the right-to-die movement, after launching a legal challenge to ensure someone could help him die without facing murder charges. His bid failed in August 2012, and days later, Tony died.
“I’m sure he died of a broken heart after hearing the judgment,” says Jane quietly. “There’s that famous picture of him breaking down in front of the cameras. Until then, his condition was very stable, but it went down quickly. He refused any antibiotics for his chest. He stopped eating and drinking - in a way he sort of sped it all along himself.”
It was devastating for Jane to lose her husband of 27 years, but at the same time, it brought an end to seven years of full-time care, medical treatments and legal battles. “Those years were hell,” admits Jane. “You’re living with someone, where the only thing they want is to die, and it’s the only thing you can’t give them.”
The family had been living in Dubai, enjoying the luxuries of the expat world, when Tony had his stroke. After his stroke, they moved back to the UK, and life changed completely. “I was really just his carer,” says Jane. “Those seven and a half years after his stroke, my life was dominated by him. I fought for his support and his equipment. Everything was all about him for a long time, and you do lose your identity for a bit, and your self-confidence. For so many years you’re his carer, you’re his wife. Then, [after he died], you can’t deny it - it’s like getting your life back and your identity.”
A year after Tony died, Jane decided to return to work. She hadn’t worked for 27 years, but was trained as a nurse, and managed to find an admin role nearby. She has now been there for four years, and after the initial shock, enjoys her newfound independence. “I quite it enjoy it really. I’ve got my life back now.”
For her, the biggest benefits are not so much the ability to now go abroad at the drop of a hat - “I haven’t really been on holiday since he died” - but the “silly little things” like walking the dog without arranging for a carer, or popping to the shops. “I’ve surprised myself,” she explains. “I was petrified at first. But I’m quite proud of the fact I’ve got a good job I really enjoy. I’m just happy to plod around.”
She is yet, however, to find a new partner, though she does believe that Tony would have wanted her to move on and remarry. “He’d be really pleased I have my life on track. But he’d perhaps want me to go and find someone else. I know if the tables were turned, he would. But maybe that’s a female/male thing. Who knows, maybe one day I would. I’ve got a few friends telling me to go on Match.com, so never say never.”
Her life has changed irrevocably since Tony’s death, but the family have by no means forgotten the beloved husband and father. Photographs of him still line the family home where Jane lives with her younger daughter, 28-year-old Beth, who works in sales, and he was sorely missed at the recent wedding of her older daughter, Lauren, 30 in Gloucestershire.
“I just wished he was there,” says Jane. “You have your little cry to start with, but he would have wanted her to be happy and not dwell on it. It was a beautiful day, and the wedding was gorgeous - in an old barn. Everyone kept saying he was up there looking down on her. I think he was there in spirit. I did a mother of the bride speech and Tony was mentioned a lot in it. He was there with her in spirit. Lauren was really close to her dad so it was difficult for her.”
The family will not commemorate the anniversary of Tony’s death today - “we aren’t an overly sentimental family. It will be a normal day and I’ll be at work” - but Jane will think about him, in the same way she does every day.
"I can’t help it,” she says. “The loneliness and the missing him doesn’t ever go away. When girls at work talk about their husbands, I bring him up in conversation quite a lot. I never moved house either. There’s so many memories here. They aren’t the best memories because it was hard, but there’s a bit of him still here. I don’t want to leave that.”
