Ben: My Mum knew exactly what her disease had in store and was terrified.

Ben: My Mum knew exactly what her disease had in store and was terrified.

In 2016, my Mum died. She had a rare disease called progressive supranuclear palsy, also known as Parkinson’s Plus – but this wasn’t what killed her. Terrified of the long, painful and undignified death that awaited her, she decided to end her own life.

One November night she weighed herself down with items from the garage and stepped off a wharf into Lake Pupuke. Mum died alone and scared, covered in mud and weeds and muck.

By that point, Mum was already very sick. She was in constant pain, her eyesight was nearly gone and she was losing the ability to speak. Movement had become very difficult. That final walk would have been agony for her, both physically and mentally. I can barely bring myself to think of it even now. But Mum felt dying of PSP would be even worse.

She was facing a future where her eyesight would disappear completely, she would lose her ability to swallow, control her bowels and gradually move at all. Her mind, though, would stay unaffected. She knew exactly what her disease had in store and was terrified.

I have no doubt that Mum would have lived longer, and in a better state of mind, if she’d had a dignified way to die at a time of her choosing. She could have spent the ‘good times’ during the last few months focusing on her kids and grandkids. What’s more, she would have found enormous peace of mind knowing that she didn’t have to act to take her own life before she lost the physical capability to do it herself.

Mum was proud, strong and independent. She’d raised four kids while working as a teacher, and running a couple of businesses on the side. She’d travelled the world and was the rock for both our family and her friends. She was the one who pulled everyone together, smoothed things over and gave us a kick up the backside when we needed it.

I’m supporting the End of Life Choice referendum because no one should have to go through what my Mum did. She died alone, cold, and frightened in a mucky lake.

This is not how we should treat the terminally ill people in our country. Mum should have been able to pass away peacefully at a time of her choosing surrounded by her loving family. And we should have been able to enjoy time with our Mum, Grandma, sister and wife, right up until the time she decided it was the right time for her to go.

Mum did not want to die, but this disease was killing her mercilessly. She’d decided that she didn’t want to live with the quality of life she was facing in the future – it was not a life she wanted or needed or how she wanted to be remembered. Arguments like ‘you have your grandkids to live for’ or ‘can’t you find something good in your life?’ just don’t stack up. In fact, seeing someone facing that choice – having to confront it in real life – makes you think really hard about what you would do in that situation. I think many people, me included, would not want to live like that either.

A disease like this is a vicious death sentence, with no cure, very little treatment and no hope of survival. Having seen what it did on my Mum, you wouldn’t wish it on anyone.

Please, give people like my Mum the choice to die on their own terms. Vote YES in the End of Life Choice referendum at the September election.