John Lydon: The punk pioneer talks grief, caring and dementia

Almost a year after his beloved wife Nora passed away, following a long battle with Alzheimer’s, The Sex Pistols and PiL frontman John Lydon talks candidly about grief, caring and hope.

John Lydon

John Lydon with Public Image Ltd (PiL) Picture credit: Rob Browne

North London-born singer John Lydon, 68, left school aged 15 and lived in a squat with John, ‘Sid Vicious,’ Ritchie. After meeting Vivienne Westwood and Malcolm McLaren, the pair, along with Steve Jones, Glen Matlock and Paul Cook, formed The Sex Pistols, igniting the punk movement.

The band’s 1977 album, Never Mind the Bollocks, remains one of the most influential records in music history. Lydon now fronts his band Public Image Limited and lives alone in California. His wife of 44 years, music promoter and publishing heiress Nora Forster, passed away aged 80 from Alzheimer’s in April 2023.

 

John and Nora

John and Nora via Instagram @pilofficial Picture credit: Andy Cantillon: JRJL Productions

How challenging has it been to acclimatise to life without Nora?

It’s been hell. The first two months were really, really hard, and it’s very, very hard at night. Very hard.

I’m prone to just breaking down for apparently no reason at all. I don’t know what the trigger points are, and I’m glad for that in many ways, as it’s a constant reminder of how human I am.

And it’s what I have to come to grips with; yes, I’ve lost her, but that doesn’t mean I should lose myself.

 

John Lydon Public Image Limited (PiL)

John Lydon Public Image Limited (PiL) pictured performing on The Late Late Eurosong 2023 special. Picture credit: Andres Poveda

As her primary carer for the last few years of her life, on a practical level, how has Nora’s passing impacted your day-to-day life?

I stopped knowing how to deal with food regimes; like breakfast, lunch, and dinner, because it was always catered around Nora, and now it isn’t. I’m eating solo so I lose interest in it.

It’s very, very hard to come to grips with as I find myself doing things automatically for her, and then when I’m halfway through that process, it’s like, ‘she’s not here,’ and then I can’t eat it because it makes me feel selfish.

Before she passed, I would never give her anything as dull as porridge. I’d make exotic omelettes and put all kinds of surprising elements in them.

 

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It was one of the great joys for her; having Alzheimer’s she wouldn’t know what the next mouthful would taste like, and she’s let me know and that was a great way of communicating with each other.

If there was a bit of smoked salmon in the omelette, she was like, ‘Ooooh.’ I tried my hardest to reintroduce her to new experiences all the time and I discovered things that she would not have eaten normally; like she’d found a great flavour for garlic for instance.

Oh My God, she loved that, but all her life she wouldn’t touch it. I think that maybe she didn’t want to be repulsed by Spanish breath.

John Lydon

John Lydon now performs with Public Image Ltd (PiL)

It was a very good way of communicating between nappy changes and house cleaning and dish washing, and that was the regime I found myself locked in, but I’m the kind of person who doesn’t moan about that.

I find the joy in it. Nora would love to laugh at me, and she’d be sat in her chair, and there I’d be running around with the hoover like Freddie Mercury, and she’d just giggle away.

Life has got to go on, and you’ve got to have the humour with it because there’s nothing intelligent about being morbid or wallowing in the tragedy of it all.

I’m not going to do an Edgar Allan Poe. No, that would be a very, very wrong thing to do in light of my love for her. She loved my humour. And I loved hers.

 

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Was there any sense of relief when she eventually passed away as you were caring for her 24/7 for several years following her diagnosis…

The years leading up to her eminent demise were harder than the other side of it because now her suffering has stopped. But there’s still the selfish part of me going, ‘Why?’

 

Your routine caring for Nora was so regimented – it must have left a huge gap in your daily routine…

I got into really loving that taking care side. I really, really missed it.

I’ve got to say after her passing, I had to really ask myself, ‘Was I missing the routine of taking care of her or her herself?’ You have to really figure this out.

My memories were immediate; of the immediate last four of five years, but I’m slowly now remembering all of the things that brought us together in the first place.

They’d vanished. They weren’t there for quite a while. Every single one of these moments is a tear-jerker. I cry like a big baby all the time.

 

“I’m a natural born carer but after Nora passed, I had to really ask myself, ‘was I missing the routine of taking care of her, or her herself?’
John Lydon

It was very painful to watch Nora dying that night. Very, very painful. Slowly suffocating because the body gives up.

The brain was still there. Something was still there that wanted to survive because Nora was a great trooper and very, very brave and faced life with great gusto and that’s all I’m left with now… I can’t watch those ghost programmes anymore, because the comedy has gone.

Me and Nora would sit down and laugh at them as much as we would at Steptoe & Son.  I watch them now alone, and it’s no entertainment at all. All that’s gone. I’ve lost a really, really good partner.

 

John Lydon

John Lydon on stage with Public Image Ltd (PiL)

Resilience has been central to your existence over the decades. How much has that been tested since Nora passed away?

I can’t let her down. I can’t mope around the house like a sad sack; woe is me and all of that, because that would really annoy her.

I have to be vivacious in my outlook on life and get up and do things. Otherwise, I’d be letting her down so terribly.

So how do I spend my days? Not feeling sorry for myself but feeling sorry for the loss.

I have to come to grips with it. There’s always that vague hope – and I suppose it’s rooted in religion drilled into you when you’re young – that she’s there still watching, and if she is, I would just hope that she’s in a good place.

 

Your experience has taught you a huge amount about Alzheimer’s and navigating the many challenges the disease sparks. Do you plan to share that knowledge?

One way or the other, I’d like to connect myself up with visiting Alzheimer’s patients because I now know the route to get in, and that, basically, comedy, humour, and just good faith helps.

There’s a lot I’ve learned and a lot of information I garnered from being so intimate with it for so long that I’d like to share.

It’s not only the victims themselves, it’s how those around them are victimised by this disease, too.

 

John Lydon is on tour this Summer. Photo credit: Instagram @pilofficial

Your public image has always been that of an irascible rebel, so some people might be surprised by your caring nature. What are the roots of that side of your personality?

I’m a natural-born carer. It might have something to do with the fact that when we were young, I was the eldest, and my mum was sick a lot, and my dad had to work away, so I’d have to be the one to get my younger brothers up and get breakfast ready for them. And I liked it.

I was always late for school, and I went through hell for it for myself, but I like looking after people.

It’s something that I find really, really enjoyable. And it was the same with Nora before she died. I feel the same with band members. I want to make sure they’re all right.

And how will I fill that space where I had been caring for Nora? I’ll go back to caring for audiences.

 

I'm a natural born carer. It might have something to do with the fact that when we were young, I was the eldest and my mum was sick a lot and my dad had to work away.
John Lydon

How much of a tribute to Nora is your latest album End of World?

It’s a very, very joyful record, and it’s one that Nora – when I played it to her – absolutely loved. She loved it and was exhilarated by it.

It goes without saying that there will never be another Nora…

There won’t be a substitute or a replacement. There can’t be, and I don’t need one, so I’m sort of getting used to the fact that I will be alone for the rest of my life.

So any of you stalkers out there looking to be Mrs Rotten… fuck off. It ain’t going to happen.

 

John Lydon’s I Could Be Wrong, I Could Be Right UK speaking tour starts on May 1 2024. For tickets, visit www.johnlydon.com