Michael Buerk has an occasional series of programmes on Radio 4 called 'The Choice'. I've heard it a few times and never been too impressed. It's about people who have to make difficult decisions - hence the programme's name - which are often projected as life changing but, as I say, they've never really touched me. Until this morning.
Today's programme was about the decisions made by Heather Pratten who watched her husband die from Huntington's Chorea, a degenerative disease that slowly, over years, robs the body of muscular control. Her husband was diagnosed with it in his 30s and died. It's hereditary so she watched her five children waiting to see if any of them would have it and two of her sons started showing signs of the disease in their 30s, just like their father.
There were a number of poignant moments, like when she said she knew her elder son had it when he sent her a shop-bought birthday card since he always sent hand-drawn cards and she knew that meant he was losing muscle control. He tried to starve himself to death to avoid the worst of the degeneration and then swallowed a wad of heroin while she held his hand since he didn't want to die alone. When he was clearly on his way out she held a pillow over his face to help him leave. She was put on trial for murder but eventually was released on a lesser charge of aiding suicide.
Her other son was in a specialist home as he gradually degenerated to the extent that he was bed-ridden and couldn't sufficiently control his throat muscles to swallow. The choice was to either transfer him to a hospital to feed him through tubes, a strange environment in which he would lie staring at the ceiling, unable to communicate or do anything, or stay where he was and die. She left him in the home he'd lived in for so many years and let him go. You can find out more about Heather's story on the Dignity in Dying website.
Can you imagine having to make those kinds of decisions? What would you do?
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