Lucy Aliband is a volunteer for Disabled Activists for Dignity in Dying (DADiD), a campaign group for disabled people, led by disabled people. Here she remembers the tragic story of her mother’s death and how the experience has made her a passionate campaigner in the legalisation of assisted dying.
How can you see her suffer like this?” I screamed and screamed
My mother was diagnosed with breast cancer in 1991. Chemotherapy, radiotherapy, 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. A coma for a couple of months followed by over two years in hospital opened the door to stress, and Mum’s cancer marched back in.
While I was in hospital struggling to learn to speak, eat, sit up and regain some control of my body and mind, Mum shielded me from the news.
But her hair started coming out 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. She couldn’t.
“I am going to have my hair cut and coloured next week before the chemotherapy destroys all of it. Hopefully the remaining hair will be strong enough to take it” She smiled ruefully. “I like your hair in a slightly darker shorter blonde bob” I replied. “Yes but I need to cover the grey. I am going to go blond with bold tiger stripes. The French like bold, and Valerie, my hairdresser, is very French.”
Mum focussed all her energies on getting me better. She was a lioness. 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, if it kills me!
“She could barely walk herself, but she fought every day, every minute of every day.”
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 2 metres, 4 metres, 6 metres she would say in the evenings. 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 then she couldn’t walk with me anymore. She could barely walk herself, but she fought every day, every minute of every day. Until eventually, in a pig-headed last bid for independence , bending down to take something out of the oven, she collapsed. She went to hospital.
“A temporary measure” we all said.
But they wouldn’t let her out again, and things got worse.
“She needed a 24 hour nurse. She was in too much pain.”
“She’ll need to go into a hospice” the doctors said. “She needs to stay on a morphine drip”.
We all fell apart. Without her strength and guidance we imploded. We went round and round in circles. “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 too much pain.
And then it went on like that, and on for days, on for weeks, and I can’t write about this much more.
She became a skeleton, lost control of her body and sank in to semi-comatose state where she lay, rasping. Black gunk streamed from her lungs. Her breathing grated like nails scraping 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 in to 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.
“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. Cruel. In-humane. How can you see her suffer like this?” I screamed and screamed. They forcibly dragged me out of her 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 a Catholic 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 not to be pathetic so I drew my palm back as far as possible and viciously slapped myself on the face. It wasn’t hard enough so I drew back my hand, 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”. The nurse surveyed me dubiously. I was obviously not taking no for an answer.
“I need to ask the supervisor” she said. I shrugged, got up clinging to the wall and purposefully went back in. They could see determination and conviction and didn’t try to stop me.
And I sat quietly and watched.
“I want a choice over my own body”
I don’t know that Mum would have taken the option (if available) but I know I am not as strong as her. I do know that I want an option.
I don’t want to die yet but when it is my time to die, I want a choice over my own body. And because I am now disabled, having a choice is all the more important for me.
That is why I am a firm believer in assisted dying.
Disabled Activists for Dignity in Dying (DADiD) is a campaign group for disabled people, led by disabled people. DADiD aims to highlight the suffering being experienced by some dying people at the end of life and, alongside Dignity in Dying, campaigns for a change in the law on assisted dying. Please visit their website and share their campaign.