Following the recent news about right-to-die-campaigners representing people with disabilities losing their battle, we speak to two people on very different sides of the debate.
My mother was diagnosed with breast cancer in 1991. Chemotherapy and radiotherapy, causing vomiting, weight and hair loss chased the cancer into remission. To celebrate the return of her hair, I bought her an extraordinarily expensive pair of designer tweezers so she could pluck her new eyebrows.
All was well until I had a major car accident in South Africa in 2005. Being in a coma for a couple of months followed by over 2 years in hospital opened the door and Mum’s cancer marched in.
While I was in hospital, struggling to learn to speak, eat, sit up and regain vague control of my body and mind, Mum shielded me from the news. But her hair started coming out in clumps and she had to confess. “There’s nothing to worry about, I beat it last time, I will beat it this time” she said, and I believed her. But she didn’t.
Mum focussed all her energies on getting me better. She was a mental Hercules. I could see her visibly urging her body to fight, to keep going, thinking, all the while; “I will see my daughter walk again, even if it kills me!”
Night after night she stroked my hand while I cried myself to sleep and then she stayed, sleeping on the sofa bed in my hospital room.
“We are going to walk, 8 metres, 10 metres, 12 metres,” she would say in the evenings. “You’re making such good progress in the gym. Don’t worry, I can hold onto you just like the physio does.” She was a dancer in her youth and still fit and strong.
But as time wore on and the cancer grew stronger, she couldn’t walk with me anymore. But she still fought every day, every minute of every day. Until, eventually, in a pig-headed last minute bid for independence, bending down to take something out of the oven, she collapsed. Her bones could not get her back up again.
So, she went into hospital; “a temporary measure,” we all said. But they wouldn’t let her out again, and things got worse.
“She’ll need to go into a hospice” the doctors were saying. “She needs to stay on the morphine drip”.
The family fell apart. Without her strength and guidance we imploded. Round and round in circles we went. “How can we get her home? We must be able to get her home. How can we get her home?” we asked each other repeatedly. But we couldn’t. She needed a 24 hour nurse.
She was in so much pain that sometimes it was so bad she couldn’t speak or move. She lay there and screamed silently, tears running down her cheeks.
She became a skeleton, lost control of her body, lost control of her mind and sank in to semi-comatose state where she lay twitching, rasping and groaning. Black gunk streamed from her lungs. Her breathing rasped like nails scrapping a blackboard. Then her breathing would stop for seconds, minutes. We gathered round anxiously stroking her hair, dabbing with a cloth at the black evil smelling gunk slithering out of her open gasping mouth. She swelled up. Her arms turned into huge taut sausages. We stroked her balloon-like hands. Her legs wasted away, bones jutting angrily out of the blanket. We massaged her feet and stick legs gently, for fear they would snap. And still the nightmare went on.
She screeched an extended intake of breath and opened her eyelids. Her eyes rolled backwards into her head, the whites bulged, minutes passed and she then she took a huge rasping breath again. And it carried on.
“More morphine please,” we cried, “for pity’s sake, more morphine.” They pumped up the dose and she sank back down again. For hours, for days, and it went on and on.
“You are cruel” I raged at the nurses. “How can you see her suffer like this?” I screamed and screamed. They forcibly dragged me out of the room. I struggled, but I could not walk unaided so I failed. They took either arm and dragged me out.
I sat outside in the corridor, numb, tears rolling down my face, cursing myself for being too cowardly to help her. To help my mother who had done everything for me. I had failed her when she needed me most.
“How can this be right?” I screamed at the nurse. “How can this happen? How could any God possibly want this much pain to happen?” They ignored me.
Then suddenly I remembered Mum had taught me to be strong, so I slapped myself across the face to get my strength back, and then I steeled myself and did it again. A nurse surveyed me quizzically. I ignored her and slapped myself a third time. I kept slapping until the sharp sting brought me back.
“I need to go back in,” I announced to the nurse calmly and firmly, “I’ll behave, but she is on her own and she cannot be on her own.” I was not taking no for an answer.
“I need to ask the supervisor” she said. I shrugged and got up clinging to the wall and purposefully went back in. They could see determination and conviction and didn’t try to stop me. So I sat quietly and watched her suffer.
It took a lifetime for Mum to die. This is why I am a firm believer in assisted dying. Her pain went on for too long, her suffering that couldn’t be cured.
By Lucy Aliband
A recent survey found that 77% of the British public are in favour of assisted dying. But what is your opinion? See Mik Scarlet’s argument against assisted dying and join the debate. You can comment on either of the articles in the comment section below, email us at editor@disabilityhorizons.com, message us on Facebook or Twitter @DHorizons.
