The Sex Pistols lead singer’s wife, Nora Forster, 79, was diagnosed with Alzheimer’s in 2018. Lydon, 66, who has been with Forster for over 40 years, now acts as a home carer for his wife.
Talking in an emotional interview with iNews, he described it as “unbearable at times”.
“There are moments when I think I can’t go on. But I have to.
“It was very stressful in the very early stages. I was like, ‘How am I going to be able to handle this? Am I equipped for it?’ But I found out I am.”
Among other symptoms, Alzheimer’s can make sufferers increasingly confused and disoriented, and cause them to have hallucinations, have disturbed sleep, and develop problems with speech and language, explains the NHS.
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Sufferers become more and more dependent on the support of full-time carers and loved ones as the disease progresses.
As well as feeding and dressing his wife Forster, Lydon has gone to great lengths to keep his wife happy. He even went on the Masked Singer last year to entertain her.
During the iNews interview, he used his own experience with memory loss after a battle with meningitis to explain the “torment” Alzheimer’s sufferers go through. When he was seven, the star arose from a coma that spanned months.
“To this day I’m scared of going to sleep every night, in case I wake up in that condition again. It’s the loneliest feeling in the whole world. I understand Nora’s situation.
“I know what torment that is. I was lucky. My memories came back. She’s doomed.”
Other symptoms of the condition can include obsessive, repetitive, and impulsive behaviour, mood changes and the onset of depression, and difficulties judging distances.
Progression of the disease can occur up to ten years before the symptoms show up, according to the charity Dementia UK.
But Lydon explained to Susanna Read on This Morning in 2021 that his wife’s developed “really strong and really quick”.
“You’re asked questions of course by the doctors, ‘When did the symptoms first start?’ But I really don’t know as I told the last doctor. she’s always been able to lose her keys. Are these indicators?'”
He added: “It’s a symptom of bigger holes in your brain to come. They lose the connections and they can’t verbalise what it is they feel sometimes, sometimes they can. Sometimes her memory is lethal…”
People with Alzheimer’s, including Forster, often remember events in the distant past better than immediate memories.
“She can go back 20 years and remember in the greatest detail with complete accuracy. Now that’s fascinating.”
The Mayo Clinic has advice for carers to help others cope with the condition. They recommend taking your time with tasks.
It said: “Allow the person with dementia to do as much as possible with the least amount of assistance.
“For example, he or she might be able to set the table with the help of visual cues or dress independently if you lay out clothes in the order they go on.”
It also explains that carers should “provide simple instructions” as people with the condition deal with one-step communication better.
Another thing carers can do is schedule routines wisely as some activities are better when the person feels fresh.