My dad had Motor Neurone Disease – it was horrible to see what he went through but I still don’t know if assisted dying is right, says Michael Booker

To be specific I didn’t ‘see’ my dad, John, he died six years ago. No, I looked at my reflection in a train window after a day at work and saw the likeness.

He had a beard for most of his adult life.

After letting it go wild in the 1970’s he spent much of the 1980s, 90s and beyond carefully sculpting it around his face, never a hair out of place.

He could never have been accused of being flashy my dad, but he took pride in his appearance always wanting to look after himself, and stay clean, neat, and tidy.

That was something that he was robbed of by Motor Neurone Disease.

He was diagnosed with MND what seemed like weeks after he finally retired from work shortly after turning 70.

I don’t know if you know too much about the aftermath of being told you have MND but, basically, you are given the worst news then sent home with a leaflet that effectively says there’s no treatment that will help.

Then, unprepared families try their best to keep them comfortable for what time remains as the disease takes abilities and functions away with alarming speed and regularity.

He hated it and we hated to see him with it.

I’ve thought about him more the past few weeks as we prepare to place the power of life and ‘assisted’ death in the hands of a political generation that would find themselves stretched if tasked with organising a lively social occasion on licensed premises.

Michael Booker with his beard that reminded him of his dad

GB NEWS

I’ve written about it before, but in his really low moments he talked about heading off to Sweden – before being corrected that he meant Switzerland, the home of Dignitas.

We joked that it would have been just his bad fortune to have made the trip to Scandinavia where he’d be more likely to freeze to death.

But I was never convinced he did want to bring on an early end despite suffering all the indignities and privations that MND brings.

A few months after being diagnosed we went on a family trip to Butlins in Skegness.

Mobility was already starting to be a problem, but he stubbornly didn’t want to use a stick or a walking frame, and he definitely didn’t want to be in a wheelchair.

In the end he improvised with a luggage trolley that he’d lean on and push from the chalet to the buffet restaurant for dinner each day.

Trips to and from the toilet already needed a lot of forward planning.

As things went on he ended up sleeping in a hospital bed in the front room of the home he was supposed to have spent pottering around in during a much longed for and much looked forward to retirement.

When me and my family came to visit it felt so alien to see him propped up helplessly on his pillows watching us head up the stairs after mum had kissed him goodnight.

Growing up he was always the first person enthusiastically bounding down the stairs in the morning heading out for work and he was usually the last up at night having locked everything up making us safe.

Now he couldn’t take one step up or down.

On those long nights downstairs, he spent hours awake with only a badly fitting NHS Oxygen mask that drove him mad and his thoughts for company. But it was his inability to look after himself that seemed to make dad most unhappy.

Living down in London I didn’t see the day-to-day struggle. But my older brother would make regular trips over to wash him in the newly built ground floor shower room.

When I did go up to Yorkshire I‘d try and help as much as I could, helping him put his Sketchers on each morning and, yes, helping him groom the beard he’d been so meticulous about keeping trim.

But I was useless at helping him shave.

I could see his frustration as he looked in the mirror as I tried with both an electric and handheld blade to keep his beard looking tidy.

It was the worst nightmare for someone who’d spent the first 70 years of his life being completely self-efficient.

But having said all that I was never ever certain, despite everything he went through, that he would have gone for an assisted death if it had been available.

And that’s why I don’t know if the MPs who are thinking about voting for assisted dying laws can be so certain either.

I saw what he went through – even the last final few weeks where he did agree to go in a wheelchair against his better judgement. And though he wasn’t the cheerful dad of old I made the most of every minute we had with him and wouldn’t have wanted any less time.

I know others with MND and other terminal conditions may disagree.

But on Friday morning before MPs vote I’ll look at my face in the bathroom mirror and I’ll see that bearded reminder of my dad.

Despite what we saw him endure I know I still won’t be certain whether or not an assisted dying law is right.

And I’m not convinced our MPs can look at themselves in the mirror that same day and say they are absolutely certain either.