The final years of Dad’s life were reduced to a desperate fight for air.
He had Multiple System Atrophy (MSA) – a rare, degenerative condition that causes gradual damage to nerve cells in the brain.
It stole his ability to swallow. This sometimes caused food and liquid to get trapped in his lungs, which triggered choking episodes and constant infections.
Clouded by tears, it’d be my job to guide an intrusive tube deep into his throat to try to clear the thick secretions blocking his airways. The process was brutal — loud, invasive and undignified.
But without this suction, his lungs would fill with mucus, leading to inevitable suffocation and eventual death.
Hospitalised with AIDS, I wanted an assisted death – now I’m opposed
Until recently, I was steadfastly in favour of assisted dying. To the point that I think I was blinkered because I didn’t engage with or wish to entertain any opposing arguments.
But one thing that has changed, mainly over the last year or so, is my mindset with regard to assisted dying.
My new views are shaped by where I’ve come from and the fact that I now live a full life spending precious time with loved ones.
And that’s mainly because more needs to be done to offer accessible and meaningful mental health support to people in their darkest moments before assisted dying is ever offered as an option.
Read more here
Dad’s ability to speak had been taken years before, but his pleading eyes said it all. This wasn’t living; it was relentless torment.
Those agonising years illustrate the grim reality faced by countless people living with terminal illnesses – just like my dad. It’s why I believe it’s vital to consider the need for assisted dying.
Before Dad’s diagnosis, he was the picture of strength and vitality. As a retired sergeant major in the British Army, he was brave, kind, and courageous.
Most importantly, he was my rock – I could always rely on him for guidance and support.
When MSA entered his life around 2005 when he was 57, it did so quietly.
At first, his walk grew unsteady, his speech occasionally slurred and everyday tasks like driving a car and using his phone became harder.
He initially thought he had vertigo, but I encouraged him to see his GP as this wouldn’t explain his changed gait.
As the months passed, it became heartbreakingly clear this was more than vertigo, ageing, or the grief of losing his wife, best friend and son in quick succession.
But it was still a long, near two-year battle to diagnosis, when we were finally told Dad had this rare and catastrophic condition.
Doctors warned early on that this disease was progressive, untreatable and incurable.
It felt as though our whole world had crumbled, leaving us helpless in the face of an unimaginable future, devoid of comfort and hope.
The condition robbed Dad of movement, balance, speech, and even basic functions like swallowing and breathing, leaving his body in a painful, unresponsive prison.
His mind remained intact though, conscious of all the losses, yet powerless to intervene.
Over the next few years, Dad’s coordination failed, leading to frequent falls. Then he had a reliance on a wheelchair and was finally confined to a hospital bed downstairs.
By 2012, the loss was all-encompassing — he could no longer eat, wash or care for himself. His once-warm, familiar voice was silenced, along with his independence and dignity, never to return.
He became trapped in a body that failed him – where lifting an eyelid was akin to fighting on the battlefield. This was to be his last war.
He was still undoubtedly there, however. Totally cognitively aware. On one occasion, his eyes met mine, slowly drifted to the clock, then returned to meet my gaze again.
Without words, Dad was reminding me it was time to leave. 3:15pm, the exact time I’d mentioned earlier that day as the time I should head home.
It was a silent but powerful acknowledgement, that although paralysed, he was still aware, still present and still looking out for his little girl.
While some people with MSA survive only a few years after their diagnosis, others – like dad – can endure its relentless cruelty for over a decade.
It was a painful, drawn-out descent toward death, an agonisingly slow walk toward the inevitable.
I already knew of my dad’s support for assisted dying due to conversations we’d had years before his illness. But despite that, this was never a topic we could openly discuss, it was just too painful, especially as it could never be an option anyway.
Dad expressed his preference during his illness too, when he refused a feeding tube and signed a do not resuscitate order; it felt like this was his only way out.
Sadly, it only led to more horror — multiple episodes of pneumonia, adding to the already unspeakable suffering caused by the disease.
His final moments were deathly quiet. On Father’s Day 2015, I uttered the hardest words I’ve spoken: ‘Dad, you never wanted to suffer like this. We’ll be fine. Please… it’s time to let go.’
Those words shifted something in us both, it was like they gave him permission to set himself free and we both knew it.
At 5am the next day, Dad passed away in his sleep.
Somewhere mixed in with the deep pain at the finality of his death, there was an equally deep relief that his suffering was now finally over.
But that ending offered no no comfort. The years of relentless suffering overshadow any fleeting peace his passing might bring.
If assisted dying had been an option, Dad could have chosen a peaceful, dignified farewell, surrounded by his loved ones.
I share my dad’s story not to focus on his suffering, but to ignite change. The potential Terminally Ill Adults (End of Life) Bill is a step in the right direction, but it doesn’t go far enough.
If passed, it will ‘allow adults – aged 18 and over, who have mental capacity, are terminally ill and are in the final six months of their life – to request assistance from a doctor to end their life.’
Dad, at no point, was told he had six months.
So we need legislation that accounts for conditions like MSA, where the decline is inevitable and irreversible. This is especially so, given that almost half of UK residents traveling to Switzerland for assisted dying do so because of neurological conditions.
This means allowing for advance directives, so people can state their wishes for assisted dying while they still have the capacity to do so. It also means acknowledging that suffering is not confined to the final six months of life.
Assisted dying is not solely about ending life; it’s about preserving dignity and granting people the freedom to choose a peaceful end in the face of debilitating, incurable conditions. We need a policy that recognises the individuality of each case, allowing people to leave this world on their own terms — with peace and dignity.
My dad taught me to stand up for what’s right, and now I carry that legacy forward — not just for him, but for everyone who deserves a kinder, more compassionate ending.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
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