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https://www.telegraph.co.uk/christmas/2020/11/21/john-lydon-caring-wife-has-alzheimersits-amazing-sadness-can/

John Lydon on caring for his wife, who has Alzheimer's: ‘It’s amazing how in sadness you can find so much joy’

The former Sex Pistol reveals the heartache and happiness of caring for his wife, Nora Forster

By
Paddy Magrane
21 November 2020 • 6:00am

‘It’s important to have a good old dance; it gets her fired up and then memories come back’ CREDIT: Geoff Pugh

The Californian sun is pouring through the window of John Lydon’s home. It’s midday in Los Angeles and the former Sex Pistols frontman is taking a break from caring for his wife, Nora Forster, 78, who has Alzheimer’s, to speak to The Daily Telegraph via video link.

As a carer, Lydon is part of a large and often unsung army. Carers UK, a charity dedicated to supporting them, estimates that 4.5 million people have become unpaid carers during the coronavirus pandemic. This is on top of the 9.1 million who were already carers in the UK. The Telegraph’s Christmas Charity Appeal aims to shine a light on the challenges they face. So what is it like for Lydon?

“It’s wonderful,” he says, sporting a rather eccentric look, his spectacles held together by a safety pin after they snapped. “We’ve lived together for 45 years as a couple. We’re well and truly attached at the hip. She knows bits of her memory are going all the time and shows me in her eyes that she’s frightened, but she’s ever so brave and brilliant and beautiful about handling it. She’ll forget many things, but she won’t forget me. Although she still thinks the other John – the younger one – is much better looking than this one.”

Born in 1941 into a wealthy Munich newspaper family, Forster was working as a music promoter in London when she met Lydon. She took her daughter, Ari, to the Sex Pistols’ early gigs, inspiring Ari to set up the all-female punk band The Slits.

Forster and Lydon were married in 1979. They became legal guardians to Ari’s teenage sons in 2000 when she struggled to cope with motherhood. Ari died in 2010, aged 48. Lydon believes that was when Forster’s condition began to worsen, likening it to a “permanent hangover”. They first publicly revealed Forster’s Alzheimer’s diagnosis in 2018. She now requires round-the-clock care, but Lydon insists that he will never put her in a care home.

“The people who can help you the most are those you’re closely and firmly attached to – a familiar face,” he says. “Just the other night, one of the grandkids rang up and we got on FaceTime and it was the most wonderful thing because they hadn’t talked to Nora for over a year. She was fighting with her memory and then it clicked.” Lydon becomes emotional. “Amazing how in sadness you can find so much joy. We’re wonderful machines but, by God, we can get broken easily.”


For many people caring for a loved one suffering with Alzheimer’s, the illness proves a huge relationship strain. Lydon thinks that it’s had the opposite effect.

“You could say it’s been a bonus, really, because it makes you work that much harder for things. The rewards are bigger when she gets it.” Just the day before, they had been listening to Jimi Hendrix’s Spanish Castle Magic. “Nora knew Jimi when she was younger and first came to England. She found him to be a very quiet and humble fella and liked him a lot. It was just great to sit in our front room remembering those times. It’s very important to have a good old dance; it gets her fired up and then memories come back.”

Lydon’s sense of humour is remarkably intact, given his 24/7 caring duties. Forster will wake up in the middle of the night and go wandering, often with disastrous results. “In the last couple of years, she’s managed to burn down two kitchens – one in London, another in California. It’s electric hobs now, but she still found a way to turn that on and put a newspaper on top.”

Lydon’s resilience may have roots in his childhood. He grew up with his Irish parents and three younger brothers in a small house with no indoor lavatory off London’s Holloway Road. When he was seven, he contracted meningitis and was in and out of a coma for a year. The illness wiped many of his early memories and affected his eyesight.

“I nearly died, Lydon says. “It was a nightmare coming out because there would be horrible visions… ghastly things like dragons who wanted to harm me.” There were also serious problems around co-ordination. “I could see a knife, I could see a fork, I could see a plate of food, but I wouldn’t know how to connect the dots.” Lydon believes the experience made him stronger and agrees with his parents’ warning at the time, to beware of self-pity. He needed that discipline when, just a teenager himself, he became a carer to his three brothers.

“My father had to work away – he was on the oil rigs in the North Sea for a time as a crane driver. I was the eldest, my mum was ill – she had several miscarriages – and I was more than happy to fit into the role of carer.”

That period of his life is depicted in the cover artwork of his new book, I Could Be Wrong, I Could Be Right, a collection of his uncensored thoughts on a range of subjects, including Donald Trump, Brexit and the Queen. (He is a fan of all three.) The cover, Lydon’s own work, is a depiction of his childhood street, he explains, now home to Arsenal FC’s Emirates Stadium. “They built it right over where I grew up. No 6a, Benwell Road.” The fire raging in the background represents the Blitz. The frightened child, he says, is him.


Lydon was supposed to be on tour this year promoting the book, but that is now delayed until 2021. He’s unsure whether it will be possible with Forster. “Last time I tried to bring her along with the band, it was chaotic, just really awful. She would scream that I was trying to kill her in the middle of the night on the tour bus, and try to escape. If I lay down and closed my eyes at all, she would feel abandoned.”

It’s hard to reconcile this gentle, caring man with the Sex Pistols’ snarling, rage-spitting lead singer. Does he still believe, as he once sang in the Public Image Ltd song Rise, that “anger is an energy”? “It’s a wonderful energy,” he says. “Rage! Fume! But what you must do in those moments is ask yourself: why did that upset me?”

The interview is nearly over when he recounts a surprising anecdote about his early life in north London. His illness had robbed him of the simple joy of hanging out with his peers, but a job he secured as a young man helped him make up for it.

“I worked at play centres, looking after children who couldn’t go home immediately after school,” he says. “I loved getting in there with the kids, building balsa-wood aeroplanes and making silly things with Lego.” He smiles. “I should be known as Johnny Not Rotten.”

Carers UK is one of four charities supported by the Telegraph’s Christmas Charity Appeal. To make a donation visit telegraph.co.uk/appeal or call 0151 284 1927. The others are Refuge, Cruse Bereavement Care and Macmillan Cancer Support. To make a donation, please visit telegraph.co.uk/appeal or call 0151 284 1927


I Could Be Wrong, I Could Be Right (£45, signed limited edition) is available from johnlydon.com, as are tickets for his 2021 Q&A tour