Sex Pistols' John Lydon became wife's carer after dementia made her 'forget everything else but me'

John Lydon, aka ‘Johnny Rotten’, the lead singer of the punk band the Sex Pistols became a full-time carer for his wife after she was diagnosed with Alzheimer’s Disease in 2018 and says he won't be giving up on her.

'Wicked' disease

Admitting “she forgets everything else but me” in an interview with The Times, the frontman for the punk rock band called Alzheimer’s a “wicked” disease …“but we’re going through that together”.

John Lydon has been with his wife Nora Forster, a German publishing heiress, for 45 years. He met Nora in 1975 at a fashion store called Sex owned by designer Vivienne Westwood.

She was working as a music promoter and he once wrote in his autobiography that “She shone, she glowed, from way across the other side of the room.”

John Lydon said of his wife’s dementia: “I know it’s going to deteriorate into something really, really terrible, but we’re facing it with a sense of dignity.

“I mean, it would be easy enough to run away and say, ‘Oh, it’s not my responsibility; things aren’t the same’. Bollocks to that. I’m John.

"When I make a commitment it’s for ever and I stand by that and I’m very proud to do the best I can for her.”

‘Overwhelmingly sad and at the same time full of rage’

The star of punk rock band Sex Pistols whose songs included ‘Anarchy in the UK’ and ‘God Save The Queen’ which was banned by the BBC, John Lydon said his mental health took a beating over the last three years spent caring full-time for his 78-year-old wife.

Of his days spent feeding, dressing and caring for her, the 65-year-old admitted: “You can as a full-time carer get quite suicidal. I will have moments that are overwhelmingly sad and at the same time full of rage.

“You have to get to grips with it and lay off the self-pity. That’s one thing I can proudly say my mum and dad instilled in me from an early age: don’t feel sorry for yourself, get on with it.”

He has this advice for others caring for people with dementia: "Keep yourself intact mentally and be proud of what you’re doing. Life must continue to the absolute; you must fight for life to the very bitter end.

“This is how the cards have fallen. This is what it is. This is your future. But that’s not the end of your future."

Living in California since the 1980s, he says caring for Nora “is all self-funded. That’s not a problem. There really isn’t any help for this as an illness. It’s such a huge unknown.

“I’m constantly on the lookout for any connections to food sources or whatever, but Nora has never eaten processed food in her life. She eats healthy vegetables. It must be genetic, but I’m absolutely open to ideas.”

Frightened of air travel and hotels, Nora Forster has a pink teddy for comfort. If it is not comedies they watch on TV, it could be the news “so long as there’s a ticker tape running along the bottom. She will read that and catch every word. That keeps the brain alert.”

“We’ve been together now 45 years; we’re not going to change anything. “You know, what’s an illness between true friends, man and wife, lovers, whatever you want to call it? We are a proper pair of people who love and adore each other.”