LOSING a parent is one of the biggest fears for most people.
But when my amazing mum Mandy was diagnosed with motor neurone disease at the age of 59, in January 2020, the one thing I’ll always wish I’d been able to do is help her end her life.
Last week, Dame Esther Rantzen triggered fresh debate on assisted dying after revealing she has joined Swiss clinic Dignitas, an assisted suicide centre for people with terminal illnesses.
The TV presenter, 83, who has terminal lung cancer, shared her wish to die on her own terms, saying: “It is a possibility that my life will become too painful, that my suffering will be too great.
“Even with the great palliative care skills that exist in this country and in my local hospice, they won’t be able to help me and I want to die.”
Since her diagnosis, Esther has campaigned for a free vote to legalise assisted dying.
Debate over its ethics has raged for decades, with opposers arguing safeguarding of elderly and disabled people may, in some cases, be overlooked, and vulnerable people may feel pressured into ending their lives for fear of burdening family.
But Dame Esther says the existing UK law, which bans Brits in excruciating pain from asking for medical help to end their lives, is a “mess”. I could not agree more.
Mum was diagnosed with her cruel disease around eight months after her symptoms began. It was subtle at first.
She felt exhausted. She began stumbling when walking and struggled to open jars and handle her phone.
Sent home to die
By the time she was diagnosed, her speech was slurred. She couldn’t move without a walker and needed a carer to help her wash and dress.
People have a one in 300 chance of getting this disease. Messages from the brain’s motor neurones can’t reach the muscles, making them weaken, stiffen and waste. It affects how you walk, talk, eat, drink and breathe.
The degenerative disease affects everyone differently, with some living one to two years and others five years or more. There is no cure and we don’t know why it happens.
When Mum was diagnosed, doctors could do nothing. They gave her a leaflet on the disease and, quite literally, sent her home to die.
Mum knew how MND was going to take away her independence and had always said she didn’t want to suffer.
But going to Dignitas in the pandemic would have been impossible, and she may not have been physically able to travel there.
Due to Covid restrictions, access to regular, quality care was sparse. I moved home and helped Mum’s fabulous friends and family look after her round the clock.
It was gruelling for both of us. She was terrified of being alone and I was too scared to leave her.
As her condition deteriorated, she expressed her wish to die on her own terms, like Esther. But, due to her rapidly failing body, she was unable to make the journey.
Mum knew how MND was going to take away her independence and had always said she didn’t want to suffer
Every eight days, a Briton travels to Dignitas for help to die. Nearly 350 Brits have ended their lives there, taking control of their own death and preventing unnecessary suffering. It costs roughly £10,000.
As a Dignitas member, anyone with a terminal illness or unendurable disability can request assistance to end their life and suffering.
The association grants access to a fast-acting, painless, lethal medication which dissolves in water and allows the patient to fall into a peaceful sleep and pass away.
The rules state you must be of sound judgement and, crucially, be able to take the drug yourself — something Mum could not do.
By the time Mum was diagnosed, it was already too late and she had to suffer the consequences.
In six months, she rapidly lost the ability to move her body, to speak, eat, drink and ultimately breathe. Those six short months felt like a lifetime to her, and to me.
During that time, memories of how she used to be filled my mind.
Mum was a special school nurse who spent her life speaking up for kids who could not, and filling their lives with love and kindness.
She showered me with affection and shaped me into a carbon copy of herself, an independent, enviably organised social butterfly.
Thanks to Mum’s term-time job, we spent all the school holidays together, packed into a static caravan with her sister Kate and her three children.
We spent hours building sandcastles, playing cards and singing There’s A Hole In My Bucket on country walks. At night I’d fall asleep to Mum and Kate giggling over a bottle of wine.
As I got older, she introduced me to the delights of cooking.
One night, after an eventful food technology class, I proudly presented her with a homemade lasagne. She took a bite, chewed laboriously and burst into fits of laughter.
When I left university, I went home religiously one weekend a month. I’d watch for her blue Nissan Micra careering around the train station corner, Classic FM blasting through the rusting doors.
On Saturdays we’d power walk into town and hit the shops, then cackle for hours over Fanny Cradock’s old-fashioned cooking shows and chew the cud about our worries, big or small.
Mum and I were best friends. There was nothing we wouldn’t do for each other.
But, when her life plummeted into a terrifying freefall, the one thing she desperately wished for — an end to her hell on Earth — I could not grant.
In March 2020, eight weeks after diagnosis, Mum lost her ability to stand. She had deteriorated overnight and the fear consumed her.
Mum and I were best friends. There was nothing we wouldn’t do for each other
She sat in her bed and screamed. It was a primal scream, like a mother who had lost her child.
There was nothing I could do or say to make her stop. When she wasn’t screaming or crying, Mum was depressed. She’d sit motionless, staring at the floor, grieving the sudden loss of her lifelong abilities.
I would sit by her side for hours, unable to stop her pain.
Some weeks later, Mum lost her speech and control of her limbs. She had two syringe drivers pumping morphine into her stomach.
One day, when carers lifted her from the bed, she shrieked and thrashed around.
I was distraught
I jumped into action, asking every yes/no question I could think of, but I couldn’t find the cause of her pain.
When we finally got her back to the bed, we found the tube to her syringe driver had pulled out the needle administering pain relief to her stomach. I was distraught.
Why didn’t I see it? I still haven’t forgiven myself. I quickly learnt to leave the room and walk to the end of the garden when the nurses arrived.
From invasive needles and catheters to wheelchair fittings, everything caused Mum pain and I’m ashamed to say I couldn’t cope with seeing it.
When the nurses left, I came back in and held her hand, or sat where she could see me. In the weeks before she lost her voice, she would beg: “Kill me, please kill me.”
And when her speech failed her, she shrieked at the top of her lungs and ran her hand across her throat over and over again.
I remember being alone with Mum one afternoon, feeding her a puréed dinner of shepherd’s pie. A piece got caught in her throat and she gasped for air for what seemed an eternity.
We rode through many choking episodes together and each night she’d pray: “Please, don’t let me wake up in the morning.”
After weeks of seeing my mum pumped full of morphine, crying and suffering day in, day out, I desperately wished her pain to end.
Mum’s failing body meant she couldn’t administer the Dignitas drug herself, let alone travel alone across Europe during Covid.
If I’d gone with her — which I would have done — I’d have been charged with assisting suicide and sent to prison for up to 14 years.
Finally, on July 23, 2020, six months after Mum’s diagnosis, she took her last breath at home. She starved to death after refusing a feeding tube that would have only prolonged her pain.
Mum’s passing was a relief for her and all of her loved ones.
She could not talk, but she was fully competent. She couldn’t move, but she knew what she wanted to do. She deserved a peaceful death.
I’m thankful to Dame Esther for fighting for the right to die. I beg the Government to listen to us.
After weeks of seeing my mum pumped full of morphine, crying and suffering day in, day out, I desperately wished her pain to end
I don’t know if my mum would have been able to end her life at Dignitas, but I wish she’d had the option to have a pain-free death, for her, and for me.
Family members should have the freedom to be with their loved ones in assisted death, without fearing jail. And people suffering, like my mum did, should have the right to choose to end their life.
Mum died the night before my 29th birthday. I was by her side. I held her hand as the life drained from her skin and I told her I loved her.
I think of Mum every day. One day my memories will be good ones, but her pain and suffering has scarred me deeply.
I wish I could have done more for her. I live with the guilt that maybe I could have done something to make her feel less scared.
Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
