Last Friday, my step mum died of motor neurone disease. Actually she died from respiratory failure, caused by her ever-weakening lungs shutting down. She was, in fact, lucky in death; after a morning of struggling to breathe, her GP gave her a sedative, and she died in her sleep.
That very morning, she had said to my Dad that she didn't want to go on any more.
Her daily life and been hard. She couldn't move. She couldn't talk, or swallow. She couldn't lift her head. She'd lost control of her saliva production, so dribbled constantly. She'd become incontinent.
But her brain was still functioning perfectly normally. And there lies the cruelty of the disease; she could see exactly what was happening to her.
My Dad, who had become her carer, is grieving. He is heartbroken. He has seen the woman he loved being ravaged by a disease, eaten away. And now he's in the strange place where most of him is consumed with sadness, but a small part of him feels relief - and guilt for feeling this way.
She was a quiet and dignified lady. With no children of her own, she and I formed a close bond. She was a brilliant grandparent to my two kids.
We will all miss her.
The timing of her death coincides with the ALS Ice Bucket Challenge. ALS is what the Brits call Motor Neurone Disease. It's wonderful that the Ice Bucket Challenge has taken off, and I understand that it's raised £250,000 for the MND Assocation, and around £34m for the ALS equivalent in the States. That is an INCREDIBLE amount of money for relatively small charities.
Who knows? The Ice Bucket Challenge may lead to a cure to this horrendous disease. A washing up bowl, some ice cubes, a tap. And a cure to thousands of peoples' suffering.