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.

Phil Newby with wife Charlotte and daughters Sasha and Jessica
Phil Newby with wife Charlotte and daughters Sasha and Jessica
Rather like the illness, his suffering has crept up slowly. MND is unpredictable and you never know how – or in what order – it’s going to take hold. A few years ago, Dad had to transfer into a wheelchair and revoke his driving licence, which was hard. He stopped being able to go to a normal dentist or barber and then he stopped being able to cook or feed himself properly.

When I left for my first term at Leeds University this autumn, what I’d describe as his true suffering had commenced: he’d started to be on a ventilator at night and he could no longer roll himself over in bed. He’s had to submit to carers helping him with showering and going to the loo, while also enduring the mental suffering – the feeling of helplessness, of being trapped in a deteriorating body with no agency – and the physical pain: his feet hurt and his back aches from sitting in his chair all day.

When my mum’s number flashes up on my phone, I automatically fear the worst. And every time I come home it’s as if I’ve lost a little more of him. He can no longer hold a fork and his pain medication makes him feel under the weather. When he gets ill or takes a fall, he doesn’t recover like an average person – he wheezes so much when he gets a cough that he has to go on a ventilator all the time.

A young Jess with her father
A young Jess with her father
He’s still my dad, of course – thankfully he’s 100 per cent sound of mind. We still talk on the phone and he can advise and support me. Right now, although he endures a lot of suffering and pain, I believe he does have some level of purpose and quality of life. He can look us in the eye; he can eat without using a tube; he can control his wheelchair to go outside; he can laugh – we still have moments of genuine laughter.

I can’t honestly say whether or not he’s happy but I do believe it’s worth him being here right now. But at some point in the future, when it gets to the stage when his suffering outweighs all this – say he can only breathe on a ventilator and eat through a tube – surely it’s time to let him go peacefully?

It’s all about dignity. I love my father and I don’t believe that leaving him with no choice but to continue down a path of increased suffering, where he most likely ends up in a hospice, is dignified. None of us wants that for him. I hate to think of him chained up to a system of fluids, not really a human anymore but a skeleton – it doesn’t make sense.

Jess Newby
‘We don’t know whether this Christmas will be Dad’s last’ - David Rose
I was interested to read a piece by Rachael Stirling, Dame Diana Rigg’s daughter, describing her mother’s final months with terminal cancer as “precious beyond words” yet she knows that Dame Diana, an advocate for assisted dying, would rather “have taken it all back in an instant, and she would have suffered considerably less”. I feel exactly the same about Dad. His dignity, like Dame Diana Rigg’s, is being stretched beyond breaking point on a daily basis. Rather than continue like this, with him diminishing, painfully, until he is unrecognisable, I’d prefer him to go peacefully, sooner.

It’s easy for others to say that we should sit back and make the most of his final months, but we know this isn’t what Dad wants. The burden is indescribable, for all involved, and he hates the pressure it’s putting on us. Yes, there is support out there for relatives, but we can’t afford to be running along to therapy groups in order to cope. Dad needs our help right now, and I find that if I allow myself to start addressing how distressing all this is, I feel even more fragile.

Everything in our home life has been dropped. There are no holidays and I think twice about inviting friends over as I don’t want to alienate Dad, but it can be awkward for everyone. Meanwhile, my mother has put her whole life on the back burner to selflessly care for my father. This isn’t dignified for him, which is why the prospect of this going on and on is so much harder than letting go.

Jess Newby’s parents Phil and Charlotte
Jess Newby’s parents Phil and Charlotte - Andrew Crowley
Assisted dying is a controversial and extremely nuanced subject – I know this. I believe, though, that if cases are looked at individually, rather than the rules being so black and white, the right answer could be found to ensure that people with incurable illnesses, like my dad, don’t suffer more than they have to. Everyone I have ever talked to about it agrees with me: people should have a choice.

We don’t know whether this Christmas will be Dad’s last, but we’re going to try to make it as dignified as possible. This means there will be nibbles rather than the traditional roast turkey; we don’t want to watch him struggling over his meal. He’ll put on a brave face as usual and we’ll laugh when we put a tea towel round him to stop him spilling down his front, and again when we drop down the arms of his chair and kneel to give him a hug. It’s all so bittersweet – if you don’t laugh, you cry.