My mother begged me to help her end her life. I was traumatized seeing her suffer
Losing a parent is one of the greatest fears for most people.
But when my amazing mother Mandy was diagnosed with Motor Neurone Disease in January 2020 at the age of 59, the one thing I would always want to do was help her end her life.
5
5
Last week Dame Esther Rantzen sparked fresh debate over assisted dying after revealing she has joined Swiss clinic Dignitas, an assisted suicide center 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 are out there this country and at my local hospice they can’t help me and I want to die.”
Since her diagnosis, Esther has campaigned for a free vote to legalize assisted dying.
The debate over its ethics has raged for decades, with opponents claiming that protections for the elderly and disabled can be overlooked in some cases, and that vulnerable people can feel pressured to end their lives out of fear of losing their families to tax.
But Dame Esther says existing UK law, which bans Britons in excruciating pain from seeking medical help to end their lives, is a “mess”. I completely agree.
About eight months after symptoms started, Mom was diagnosed with her cruel disease. It was subtle at first.
She felt exhausted. She started stumbling while walking and had difficulty opening jars and reaching for her phone.
Sent home to die
By the time she was diagnosed, her speech was slurred. She could not move without a walker and required a caregiver to help her wash and dress.
People have a one in 300 chance of getting this disease. Messages from the brain’s motor neurons cannot reach the muscles, causing them to 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 Mom was diagnosed, there was nothing the doctors could do. They gave her a leaflet about the disease and literally sent her home to die.
My mother knew how ALS would take away her independence and had always said she didn’t want to suffer.
But going to Dignitas during 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 scarce. I moved home and helped Mom’s wonderful friends and family care for her 24 hours a day.
It was debilitating for both of us. She was terrified of being alone and I was too scared to leave her.
As her condition worsened, she expressed her wish to die on her own terms, just like Esther. But due to her rapidly failing body, she was unable to make the journey.
My mother knew how ALS would take away her independence and had always said she didn’t want to suffer
Every eight days a Briton travels to Dignitas for help with his death. Nearly 350 Britons have ended their lives there, taking control of their own deaths and preventing unnecessary suffering. It costs around £10,000.
As a Dignitas member, anyone with a terminal illness or an unbearable disability can request help to end their life and suffering.
The association provides access to a fast-acting, painless, lethal drug that dissolves in water and ensures that the patient falls asleep and dies peacefully.
The rules require you to have good judgment and, crucially, be able to take the drug yourself – something mum couldn’t do.
By the time Mom was diagnosed, it was already too late and she had to deal with the consequences.
Within six months, she rapidly lost the ability to move her body, speak, eat, drink and ultimately breathe. Those six short months felt like a lifetime to her and to me.
During that time, memories of what she used to be like filled my mind.
My mother was a nurse at a special school who spent her life advocating for children who couldn’t, filling their lives with love and kindness.
She showered me with affection and molded me into a copy of herself, an independent, enviably organized social butterfly.
Thanks to Mom’s temporary job, we spent the entire school holidays together, sharing a mobile home with her sister Kate and her three children.
We spent hours building sand castles, playing cards and singing There A Hole In My Bucket on walks through the countryside. That evening I fell asleep while Mom and Kate giggled over a bottle of wine.
As I grew older, she introduced me to the joys of cooking.
One evening, after an eventful food technology class, I proudly presented her with a homemade lasagna. She took a bite, chewed with difficulty, and burst out laughing.
When I left college, I religiously went home one weekend a month. I looked forward to her blue Nissan Micra speeding around the corner of the train station, Classic FM blasting through the rusting doors.
We did that on Saturday current walk into town and go to the shops, then laugh for hours over Fanny Cradock’s old-fashioned cooking shows and ruminate on our worries, big or small.
Mom and I were best friends. There was nothing we wouldn’t do for each other.
But as her life went into a terrifying free fall, the one thing she desperately wanted was an end to her hell Soil – I couldn’t allow it.
In March 2020, eight weeks after diagnosis, Mom lost her ability to stand. She had deteriorated overnight and fear consumed her.
Mom 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 cry, 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, Mom was depressed. She sat motionless, staring at the ground, mourning the sudden loss of her lifelong abilities.
I sat next to her for hours, unable to stop her pain.
A few weeks later, Mom lost her speech and control of her limbs. She had two syringe drivers pumping morphine into her stomach.
One day, when caregivers lifted her out of bed, she screamed and thrashed around.
I was desperate
I took action and asked every yes/no question I could think of, but I couldn’t find the source of her pain.
When we finally got her back to bed, we discovered that the tube to her syringe driver had pulled out the needle that was delivering pain relief to her stomach. I was desperate.
Why didn’t I see it? I still haven’t forgiven myself. I quickly learned 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 my mother pain and I’m ashamed to say I couldn’t bear to see 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 begged, “Kill me, please kill me.”
And when her speech failed her, she screamed at the top of her lungs, running her hand over her throat again and again.
I remember being alone with Mom one afternoon and feeding her a pureed shepherd’s pie dinner. A lump got stuck in her throat and she gasped for air for what seemed like an eternity.
We experienced many choking episodes together and every night she would pray, “Please don’t wake me up in the morning.”
After weeks of watching my mother being pumped full of morphine, crying and suffering day after day, I desperately wished for her pain to end.
Mum’s failing body meant she couldn’t self-administer the Dignitas drug, let alone travel around Europe alone during Covid.
If I had gone with her – which I would have done – I would have been charged with assisting suicide and jailed for up to fourteen years.
She finally breathed her last at home on July 23, 2020, six months after mom’s diagnosis. She starved to death after refusing a feeding tube that would have only prolonged her pain.
Mom’s passing was a relief for her and all her loved ones.
She couldn’t talk, but she was completely competent. She couldn’t move, but she knew what she wanted to do. She deserved a peaceful death.
I am grateful to Dame Esther for her fight for the right to die. I beg the government to listen to us.
After weeks of watching my mother being pumped full of morphine, crying and suffering day after day, I desperately wished for her pain to end.
I don’t know if my mother could have ended her life at Dignitas, but I wish she had the opportunity to have a pain-free death, for her and for me.
Family members should have the freedom to be with their loved ones during an assisted death, without fear of prison. And people who suffer, like my mother, should have the right to end their lives.
My mother 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 about mom every day. One day my memories will be good, but her pain and suffering left me deeply scarred.
I wish I could have done more for her. I live with the guilt that maybe I could have done something to make her less afraid.
5
5