John Lydon, His Wife, and Alzheimer's

John Lydon competed to represent Ireland at the 2023 Eurovision song contest to raise awareness of Alzheimer's since his wife, Nora Forster (1942-2023), had been diagnosed with Alzheimer's in 2018.

I’m doing it to highlight the sheer torture of what Alzheimer’s is. It gets swept under the carpet, but in highlighting it, hopefully we get a stage nearer to a cure.
John Lydon

“Forty-eight years together isn’t enough. But even in illness we’re still finding out new and great things about each other. With Alzheimer’s, they can’t always formulate the words but the real person is still in there. The saddest thing you can do is cut them off.”
John Lydon

“As I say in the song, old journeys end and some begin again, but this is the beginning of a new journey with us."
John Lydon

“And, oddly enough, as bad as Alzheimer’s is, there are great moments of tenderness between us. And I tried to capture that in the song, and so it’s not all waiting for the Grim Reaper."
John Lydon

“I can see her personality in her eyes, she lets me know that it’s the communication skills that are letting her down."
John Lydon

“And I’m just blessed really that I can be there and catch on to that and maybe share that information as this progresses, as we know it will, to its ultimate sad demise. "
John Lydon

“Pass something useful on to other people. It’s a subject now that I’m so firmly tied up and wrapped up and connected to that I care now for all of its victims. Particularly to spouses that have to endure this.”
John Lydon

“We’re not dealing with the walking dead. It’s a matter of memory fusing in and out."
John Lydon

“I had those issues when I was younger, coming out of meningitis. So I’m absolutely in the right place for it. It makes us love one another even more, no question." 
John Lydon

“We’d never be: ‘Oh dear, time to lock you away’. No.” But locating advice as to how to cope with the mental decline of his “significant other” has not been easy. "
John Lydon

“It’s tough to deal with advice from people who absolutely mean well. But I have people who talk to me about their mother or their aunt, who are going through dementia. And it’s not the same for me because Nora’s my significant other. It’s a huge world of difference. And there’s no real literature out there or expert advice to help me.” 
John Lydon

“We find a place in comedy. We’ve always had a good sense of humour. That’s absolutely vital. I think humour keeps you smart.” 
John Lydon

“Alzheimer’s is dreadful. She has to relearn things every day and you must never lose your patience with it."
John Lydon

“No matter how many times you ask the same question, give the right answer. Don’t fob them off. I’m learning a lot about myself this way. It’s a strange blessing, I suppose, because oddly enough it’s bringing us closer together. "
John Lydon

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photograph (1977) via