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Or how difficult it is to become a caregiver for your partner
In the 1970s, he was called the biggest threat to young people after Hitler because of his calls not to obey the politicians and monarchs he was addressing in his songs. John Lydon came in with red hair coming out and he sang that he was an antichrist and an anarchist. Although the world famous Sex Pistols only lasted about three years, he earned a reputation as one of the founders of the punk movement, whose word still matters today when it comes to opposing the political establishment.
In her new book, “Maybe I’m Wrong, Maybe I’m Right,” Lydon presents a completely unknown part of her personality. It’s shocking again, but in an unexpected way. It turns out that the 64-year-old musician has become the caregiver for his wife Nora Forster, 78, who suffers from Alzheimer’s. Take care of her yourself. Cook, wash, clean. Sometimes you even have to bathe her like a baby, because sometimes she blocks and forgets some things. For example, you pour a cup of tea on your head because you decide it is something to wash.
John relies on help only when he’s on tour with his new band PIL. You cannot afford to quit your job. “I have to keep winning because everything is so expensive. I had to replace all the appliances with those horrible glass lids that are very difficult to clean because gas lids are dangerous. Nora has already burned our houses twice. The first was in London after she canceled her home insurance the day before. She had thought, “What a waste of money, I’ll help John,” and then the dryer exploded, “the musician wrote. Later, something similar happened at their home in California, where they now live.
“She doesn’t forget who I am, but the memory of her grandchildren sometimes betrays her. She can think of things from 25 years ago, but she can’t remember what happened ten minutes ago. Her memory is a constant puzzle that keeps unraveling, but her personality is still there and this is the man I fell in love with more than 40 years ago, that will not change. Of course, there are problems, but I am resistant and she is still my favorite “, shares the former leader of” Sex Pistols “.
His wife has always been a bit distracted, but things got worse ten years ago after their daughter Ariana died of cancer at the age of 48. She is from Nora’s first marriage to German singer Frank Foster, but was raised by John. Lydon and just like he plays in a British punk band. After her death, she also cared for her three children, the youngest of whom was 15 at the time. Although the grandchildren are now between 25 and 30 years old, the musician defines them as still “mentally young” to face his grandmother’s illness as he does.
Nor do they find a common solution with the doctors he consulted. The reason is that they offer treatment with powerful drugs that Lydon considers dangerous for Nora. “When someone goes into their later years, taking away the freedom and fun of running, jumping, walking in the sun and talking is not a solution.
It will be easier for me, but not for her ”, thinks the punk star. Every time someone tries to persuade Nora to place her in a home for people with similar illnesses, he always responds with no. “It just came to our knowledge then. I can’t do it. She is not an annoying aunt, but the most important part of my life. I would have died of pain without her,” says the musician.
He himself also had a period in which he did not know who he was, as a child he contracted meningitis. His condition is very serious, he falls into a coma. When he wakes up months later, he discovers that he has forgotten much of his previous life. “I know you don’t know who you are at any given moment. That gives me something to do with her.” I feel her pain, I experience it with her, “he wrote.
You also have experience caring for another person. He has to do it for his younger siblings when his mother is resting. “It just came to my attention then. I’m a little nurse. I like to help. In fact, I’m pretty happy and I think everything in a person’s life is a test,” Lydon said. That is why he decides to share in his book the ordeal they go through with Nora to help, if possible, other couples in their situation.
According to a series of studies conducted by organizations that work with patients with Alzheimer’s or dementia, one of the hardest things for their loved ones to deal with is the fact that they will never recover. The lost memories will not return and the physical deterioration will deepen to such an extent that the daily schedules will revolve around when the patient is in the best shape, which is usually at the beginning of the day.
Another big challenge is not arguing with them, no matter how many nonsensical things they say and want to do. “If, for example, they say they want to go home while sitting in the living room you have shared for 40 years, respond well and tell them that you will be leaving shortly when there is less traffic. Such a redirection can help your partner to be calm and happy ”, explains the Spanish Alzheimer’s Society.
They also advise you to take a deep breath and remember that the illness speaks, not the loved one, when they begin to not recognize you and accuse you of harassing them. Respond politely and try to connect in a new way by playing music that you like or talking about things you remember from your life together. Sex can also provide comfort in the early stages of the disease, but hugs and hands are a better way to bond when the disease has progressed and the couple can no longer consent.
The dementia scholar prepares to die
A British scientist suffering from dementia has announced that he will rely on assisted suicide in Switzerland to ensure a dignified death. Alex Pandolfo, 63, told the Daily Mail that he had already contacted a clinic that provided such services and that his mother and two younger sisters fully supported his decision.
“I want to go there and end my life because I am not prepared to go through this suffering and I am not willing to give up my autonomy. I’m not prepared to live a life where I can’t even hold a knife and fork, ”explains the university professor. He was diagnosed with Alzheimer’s in 2015, he is not married and has no children.
He has seen dementia destroy his father and he does not want to go through the same thing. “He was an independent and resilient man, and in the end he couldn’t bear going to the bathroom. If you help him, he will shed tears,” Pandolfo said.
He plans to leave for Switzerland at the end of next year, but if his disease progresses rapidly, he will do so sooner. The reason is that he has to pass a medical examination, that his mental capacity allows him to decide to commit suicide. If your dementia symptoms are severe, the clinic will refuse to help you.
Assisted suicide is prohibited in England and is punishable by up to 14 years in prison. Six British citizens with dementia are estimated to have ended their lives in Switzerland.
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