Mum dedicated her life to protecting others. In Australia’s aged care system, she received no such sanctuary

Lech Blaine's mother and family. ‘Mum believed in a social safety net, because she knew how easy it was to slip between the cracks.’ Photograph: Lech Blaine

In 2013, my mum Lenore was diagnosed with a rare neurodegenerative illness. This sickness – a sadistic killer – was resolutely incurable. “It’s the worst-case scenario,” said the neurologist, who had a model of a human brain on his desk. “Like having Parkinson’s and Alzheimer’s at the same time, for a long time.”

Uh-huh: this explained mum’s escalating physical clumsiness, mood swings and memory lapses. Alcohol was merely the coping mechanism, not the cause. She would gradually lose the ability to chew food and string coherent sentences together, and eventually the capacity to speak, move or ultimately breathe. “I just want to stay at home,” she said. And then: “Until the end.”