John Lydon says caring for wife with Alzheimer's has 'shaped me into what I am': 'I don't see how I can live without her'
John Lydon is opening up about caring for his wife of 44 years following her diagnosis with Alzheimer's disease.
The former Sex Pistols frontman, 67, who is commonly known as Johnny Rotten, spoke candidly with the Sunday Times about the progression of his wife Nora Forster's struggle since being diagnosed with the progressive neurodegenerative disease five years ago.
“All the things I thought were the ultimate agony seem preposterous now," said Lydon. "It’s shaped me into what I am. I don’t think I’ll ever get over it. I don’t see how I can live without her. I wouldn’t want to. There’s no point.”
The rocker added that it's been "worth every moment," noting that "no joy comes without pain and, boy, do I know that now.”
Lydon recently competed to represent Ireland in the Eurovision Song Contest, singing "Hawaii" in honor of Forster, 80. The somber tune, which featured lyrics “remember me, I’ll remember you,” was ultimately determined to not be the right fit for the program, and Lydon came in fourth. In January, he told Good Morning Britain that the idea of leaving his wife to perform on Eurovision was excruciating.
"It brings tears to my eyes just even thinking about performing it live because I'll be away from her. But I've got to do that," he said at the time.
Ultimately, Lydon, who loves to make dinner and play music for Forster, says caring for his longtime love is "not a job at all.”
“You make your commitment to a person and nothing changes. These are the cards life dealt, and my mum and dad were right: never show self-pity. Ever," he told the Times.
Lydon admitted he could be caring for himself better, sharing that he has “stopped thinking about myself in every way." He also shared his advice for fellow caregivers.
“The best advice is that no matter what they do, it’s all your fault," he shared. "There’s no way of mollycoddling this. It’s hideous. So pernicious and vile to watch someone you love just slowly disappear.
“And don’t ask them questions! And don’t switch off on them. The person is still in there," he added. "One danger is negating them, abandoning them as dummy-dumdums. You’ll feel like you are not capable of enduring this, but you must. Because you look in their eyes and they need help. You cannot turn your back. Even though it’s killing you as well."
Lydon and Forster currently live in Los Angeles, which the rocker said is actually a much better place for aging people.
“There’s a terrible regime in Britain of suppressing you when you reach a certain age,” he says. “Go away and die! Stop making a fuss! But these years should be the most active of your life and me and Nora planned to be adventurous. But the adventure is not going to plan. I break into tears thinking about it. I’m shaking. I’m shaking with it.”
Lydon first revealed Forster's diagnosis in 2020 in an interview with Britain’s The Mirror, Yahoo Entertainment previously reported.
“I am her full-time carer and I won’t let anyone mess up with her head,” Lydon said at the time, stating that he intended to keep Forster at home, rather than relying on a facility. “For me, the real person is still there. That person I love is still there every minute of every day, and that is my life.”