My dad’s dignity is being stretched beyond breaking point – I support his right to die

I don’t remember the day my father was diagnosed with motor neurone disease, but I do recall him turning to me on a day out in Leeds and saying, “Jessie, do you think I’m walking more slowly than usual?” I was nine at the time and I wasn’t sure what to say – maybe he was, a little bit, and he wasn’t holding my hand properly, which was confusing. Dad was always so active, playing with my sister and me for hours in the garden, yet he’d suddenly stopped being able to grip with his fingers and toes and was getting frustrated and upset. After he was diagnosed with MND, I remember thinking that at least we know what it is now.

It’s hard for a child to understand that you can’t always make someone better – not that my dad didn’t try. 

By nature, he is positive and determined and he wasn’t going to let MND get him: he vowed to stay fit and healthy and try anything he could to stop the illness progressing. I knew it was incurable – my parents never tried to hide that from me – but I did believe for a while that maybe Dad would be the one to find a way through it. I don’t mean discover a cure but I thought he might find a way to slow the progression and never have to deal with intense suffering. 

He tried every remedy he could and even went to India for month-long spiritual treatments. It was hard watching him put himself through all this but I was hopeful. Nothing seemed to make any difference, though, and by the time he set off to India for his third Ayurvedic treatment, it had begun to feel like he was clutching at straws.  

Dad and I had our first conversation about the end of his life three years ago. I found it incredibly depressing to hear him tell me that he’d like an assisted death, just as I found it demoralising when he started talking about the subject on his podcast, Kill Phil. But I’d feel exactly the same if I were him, which is why I’m so proud that he’s speaking up. He doesn’t want to leave us, but faced with this inevitability, he doesn’t see how the amount of suffering he might endure with this illness is fair on him or us.