Tring woman uses her own poignant story in continued campaign for end of life care

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Mireille continues to run Death Cafés and events to encourage people to talk about a difficult but important topic

A Tring woman is continuing her campaign to encourage people to discuss their end of life preferences after her own traumatic experiences.

Mireille Hayden, who founded Gentle Dusk, was in a twist of cruel irony was unable to persuade her father to talk about his own preferences.

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She was forced to watch her father in pain and physically restrained for his own safety as he approached death.

As like 93% of the population, he made no record of his wishes and preferences for the care he would like at the end of his life, and his family were left to assume what he would have wanted.

For Mireille, who runs a not-for-profit organisation discussing similar issues, witnessing her 78-year-old father’s obvious distress was almost unbearable.

“My dad had had a series of strokes before the first lockdown, so severe that he ended up with progressive dementia,” said health psychologist Mireille.

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“In November 2021, I got a call to say he was very unwell and about to die.

Mireille Hayden, Gentle Dusk founderMireille Hayden, Gentle Dusk founder
Mireille Hayden, Gentle Dusk founder

“By the time I got to him – he lived in central France – he was being treated medically to prolong his life even though he was obviously in his final days.

“He was restrained to the bed because he was so agitated; the scene was not for the faint-hearted. It was desperately sad and not what he would have wanted.

“Nobody wants to die like that. It was not humane. It was not dignified.”

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Eventually, Mireille managed to secure a palliative care bed for her father in the same hospital.

She said: “There he was treated more holistically, given better pain relief and medication for agitation, and had his restraints removed. He died a natural death peacefully three days later.”

Gentle Dusk works with individuals, the NHS, and private and voluntary sectors across the UK.

Mireille, discussed how despite spending 20 years working on end of life care and palliative care services, she had been unable to breakthrough in her chats with her dad.

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She added: “I did try having that conversation with my dad, but like many people, he refused to even discuss the matter. He would not talk about anything emotional at all.

“Such conversations are difficult but if you make end of life plans and share them with your family, the better chance you have of dying in a place of your choice and with better end of life care.

“A soft death and a loving death are the best gifts you can give to your loved-ones. What I would describe as a profound act of love.”

The motivation to form Gentle Dusk in 2011, was the death of Mireille's mother who suffered a stroke when she was 67 and was bedridden and fed through a tube for two years.

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Mireille said: “In my own case, the death of my mum broke us up as a family which was desperately sad. We disagreed about a lot of her care, and her place of care, and how to treat her.

“We were in a lot of pain so there was a lot of anger against each other; our memories are tainted with those moments, when it could have been so different.”

Gentle Dusk offers a range of training courses for health and social care professionals and for the public to gain skills and confidence initiating difficult conversations.

It also regularly hosts events, including Death Cafés, providing individuals the opportunity to talk openly about dying and death.

More information on the organisation is available on the charity's website here.

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