What one Huntington's disease carer learned about the impact of long-term care

This guest blog has been written by author Phil Dourado about life caring for his wife.

"My wife, Sandy Sulaiman, was the lead author of our family book, Learning to Live with Huntington’s Disease, published almost twenty years ago. You may have met her in those pages.

Sandy wanted to be cared for at home. So, we did, for twenty years. Sandy died in 2019.

So, why did I feel like a complete failure after the care was over? Not just for a few months, but for years? The singer Tom Jones and the fashion designer Giorgio Armani helped me solve the mystery. Neither of them came around for a chat. But both said the same thing, years apart.

Tom Jones came first. I heard him on the radio explaining how, after his wife Linda had died, he felt he might never sing again. He had particular trouble, he said, with singing one of her favourite songs, What Good Am I? The line he found hardest was, “What good am I, if I just turn my back, while you silently die?” Jones explained that he and his wife had always looked after each other. He had failed her at the last because he didn’t stop her dying.

Then, in September 2025, Giorgio Armani died. His obituaries mentioned an interview he gave back in 2001. Armani was asked what he regarded as his greatest failure. The question was meant to be about his career in the fashion industry. But he gave a personal answer: “Not being able to stop my partner dying.” 

So, this is a thing, I realised. This is a thing that you feel when you have looked after a person for a long time and then they die. You feel you failed them at the last. Of course we can’t stop someone dying. That’s a form of ‘magical thinking’. But you feel that’s your job, even if you don’t realise it. As with a lot of the self-sabotaging we do in our heads, once you realise what it is, its power starts to evaporate. So, I’ve got Tom Jones and Giorgio Armani to thank for the Aha! moment that made me begin to stop feeling like a failure.

Longterm carers have to develop a superhero persona to keep going. And that’s not sustainable. Mine sputtered out of existence when my wife died. My threadbare cape was stuffed in the back of the wardrobe. But, what if, given the hereditary nature of the illness, I have to rummage around to retrieve the raggedy cape, sometime in the future, patch up the holes and put it back on?

What if someone I love needs me to do it all again, when I am no longer the person who did it before, no longer have those capabilities? Or cape abilities. This sense of looming failure is also going to join the evaporating sense of past failure that Tom and Giorgio helped to dispel.

My older son and I were up a hill, halfway through walking the Camino de Santiago in memory of his and his brother’s mum, when the news came through that the first ever treatment for Huntington's disease had been proven. ‘Proof of concept,’ Cath Stanley calls it, carefully. It had slowed the advance of the illness by seventy-five per cent, as you know, in twenty-nine people. For the first time, the maths, the risk equations of developing Huntington’s disease and the inevitability of its advance if you have it had shifted. The inevitable no longer is. Or at least won’t be, in time.

Too late for many of us. But a way forward that we all need to celebrate as it lifts a current load – one of future responsibility and worry about the next generations – for the first time ever.

Up on that Spanish hill, my son and I jokingly called Sarah Tabrizi and her team’s discovery the Miracle on the Camino. So, no longer a failure looking back (well, I’m working on it, anyway). No longer an impending sense of failure when I look forward.

Time us long term carers stopped beating ourselves up. If you’re anything like me, that is. Most of you hopefully know how amazing you are and this is largely my own problem. But in case anyone else feels like me and Tom and Giorgio, I hope this post helps."

Phil Dourado’s new book - Only on the Camino: From Sarria to Santiago, complete with a ‘kind of’ miracle – is in part a follow-up to Sandy’s book. It is available on Amazon from 3 October 2026.