DAD DIDN’T FEAR DEATH, HE FEARED LOSING CONTROL
A poignant last journey
My stomach swirled with nerves as I clutched my plastic bag stuffed with toiletries and removed my shoes, preparing for airport security. I was with my family – my mum, dad, and older brother Edward – and we were surrounded by groups seemingly just like us: it was November and everyone was jetting off for some much-needed winter sun. But their excited chatter washed over me as I tried to swallow back my tears. I was so afraid my crumbling emotions would give us away. Even once we were through security – meandering around shelves of duty-free Toblerone – the fear we’d be stopped coursed through me. I knew that to anyone watching we must have looked just like the thousands of other passengers, but we knew the truth: while four of us would be flying out, only three would return.
When I was little, Dad and I would build dens out of logs and climb trees together. He worked on an army base and would bring home thick ropes that we would clamber up. He was strong and stoic – I couldn’t imagine anyone, or anything, ever hurting him. But then, in 2008, when I was 13, Dad was diagnosed with Huntington’s disease, the genetic condition that causes cells in the brain to slowly degenerate. Dad suspected he had it, as members of his family had previously been diagnosed. The doctors confirmed his worst fears and gave him a prognosis: he had just 10 years to live.
We weren’t a family who spoke openly about our emotions, and Dad didn’t want Edward or I to know about his diagnosis, but Mum insisted. She sat us on the sofa in the living room, the front door slamming as Dad left to take our dog for a walk, and delivered the news. I felt numb, and when Dad returned, we didn’t talk about it. He didn’t want to. That night, though, in my room, I scanned the symptoms online. Tears
dripped on to my keyboard as I scrolled: falling, choking, mood swings… He hadn’t shown any of these signs yet; he was just Dad. It was like reading a list of horrendous moments from our future, knowing there was nothing we could do to stop them. Every article said the same thing: there is no cure.
Over the years, we became helpless bystanders as Dad succumbed to each symptom: the first time he choked on his dinner, Edward and I were paralysed with shock, and soon he started stumbling as he walked down the stairs. His illness created a silent unity between the four of us, but Huntington’s also caused Dad’s moods to darken, and he’d often be angry. We’d tiptoe around him, for fear of an outburst, telling ourselves that this wasn’t the real Dad, but Huntington’s slowly eroding his true self. Birthdays were no longer celebrations, but reminders that I had another year less with him. So when my friends began moving away for university, I knew I wouldn’t join them. Instead, I got a job as an administrator at a local company.
Dad knew his death was likely to be a painful one and that he was going to end up losing control of his body and mind altogether. In 2017, he began threatening suicide. It was either that, he told us, or Dignitas – a centre in Switzerland where severely and terminally ill people can go to end their lives under the guidance of professional staff. Assisted suicide is illegal in the UK, but it was what Dad wanted, and he began to bring it up regularly. We would brush it off and say he was being silly. There was a tug-of-war between his yearning to die on his own terms, and us wanting him to live as long as possible. But then, one Friday in April, he changed our minds for us.
An impossible choice
I was brushing my teeth with my boyfriend, Zak, when I noticed the pills. Dad often took tablets, so I didn’t think anything of the empty packet of painkillers on the edge of the sink. I went to bed but was woken at 3am by Mum banging on the door. Dad had taken an overdose. Terrified, I ran to find him. He was in bed and didn’t want to be saved. He begged us not to call an ambulance and, instead, to let him die. Eventually, he relented. In hospital, every so often, he’d let his eyelids settle and say, ‘I’m going now,’ as if willing himself to die. I was torn: he desperately wanted to end it, but I was so relieved he’d lived.
After that night, Dad’s symptoms meant he could no longer look after himself and, as a family, we found it too difficult to care for him full-time. So he moved into a care home during the week, spending weekends at our house. I’d do what I could to comfort him – brushing his teeth, pulling on his socks and delivering his meals on my lunch breaks. He ate soft foods he wouldn’t choke on, like rice pudding. And he’d only ever drink cold tea – hot water burned his mouth. On weekends, I’d take Dad out for the day: he loved sitting in the passenger seat as I drove us to Mcdonald’s. He’d order a Big Mac, a Mcflurry and a milkshake, and I’d sit across the Formica table, taking pictures as he wolfed down the lot. Though the parent/child dynamic had reversed, I’d occasionally see flickers of the old Dad. On Sunday nights, he’d beg to stay with us at home, insisting he could cope. But erratic behaviour was never far away: once, Mum was returning him to care when he leapt from the car into a main road.
Before he went into care, I’d thought Dad was being selfish – I couldn’t understand his desperation to die when he had us to live for. But after his overdose, I slowly began to realise that we were the selfish ones. Despite
‘I SLOWLY BEGAN TO REALISE WE WERE THE SELFISH ONES’
this, when Mum told me that summer that she’d agreed Dad could go to Dignitas, I was angry: why wasn’t our care enough for him? But the more I thought about it, the more I understood Dignitas to be Dad’s saviour. He had to go while he could still consent and take the lethal drug himself. Otherwise, he risked being trapped in his ailing body until death came naturally, a thought that was impossible for him – and us – to bear. He hated being in care, and I couldn’t stand the idea of watching him deteriorate. I decided that I wanted to be by his side in Switzerland. Dad booked his death at Dignitas for the 30th November 2017, aged 59. I’d pleaded with him for one more Christmas, but he was adamant. The night he booked it, Dad was elated and wanted to celebrate, but I felt sick. I plastered a congratulatory smile on to my face as Dad – who never drank alcohol – savoured a glass of red wine. It had been a long process. To be accepted at Dignitas, he’d had to become a member, send Dignitas a formal request and a medical file, pay £9,500 for the process, then undergo multiple consultations there.
Having control over his death gave Dad a new lease of life, but we were sworn to secrecy for fear of prosecution. Even though assisted suicide is legal in Switzerland, it’s illegal to help someone to go if you’re a UK citizen. We told the care home we were going on holiday, and Dad even worried about telling his brother, who is a policeman. We booked Dad a return flight to avoid suspicion. I also quietly hoped it could be a way out, if he changed his mind. As the date drew nearer, I focused on making it through each day and hiding my tears from him. He’d say to me, ‘You don’t mind, do you, Lottie?’
‘Dad, it’s your life, you have to do what’s right for you,’ I’d reply. It stung, but I meant it: I didn’t want him to suffer.
The fact his death was premeditated meant we had time to say everything we wanted to. My brother and I each wrote him a letter. As I described how proud I was of him, that he was my hero and always would be, I sobbed so hard the ink ran, and the paper was soaked through with tears. For our last family day out, the four of us went to Bournemouth beach. I pushed Dad along the pier in his wheelchair as he laughed, watching our dog, Alfie, splash in the waves. We sat on the promenade eating fish and chips, bathed in the late-afternoon autumn light.
We planned to spend a few days in Zurich before Dad’s death. Weirdly, once we made it through the airport, and the fear of being caught there, the week was fun. We behaved like normal tourists, visiting glassy lakes and drinking at cottage-like pubs. The security of death had made Dad carefree. He walked more than he had in years, released from the fear of falling, and the night before we went to Dignitas, he finished everyone’s leftover desserts, swallowing spoonfuls of cream and flaky pastry.
On the morning of his appointment, I blinked awake, and for two precious seconds, I forgot what was about to happen. In the car, Dad gave his wedding ring to me and his watch to Edward. The band was loose around my finger, so I slid it on to my bracelet.
Dignitas’s blue building morphed into view, looking more like an industrial unit than a medical facility. Edward went to wait in a café with a close family friend who had travelled with us – Ed has sensory processing sensitivity, meaning he feels more deeply than others, and would have been too overwhelmed. Meanwhile, Mum, Dad and I went
‘THE SECURITY OF DEATH HAD MADE DAD CAREFREE ’
in. It wasn’t like a hospital: there were no corridors or strip lights, and we didn’t see another patient. Dad’s room was like a fancy apartment, painted white with a bed, kitchenette and a radio playing classical music. We sat down and the doctor said: ‘Keith, I must ask you again: do you want to die today?’
‘Yes,’ Dad replied. ‘I’m positive.’ The sliver of hope I’d clung to melted like an ice cube – my dad wanted to die more than he wanted to live.
Dad’s head rested on a bright red pillow and the foot of the bed was lined with candles. He drank the prescribed medication voluntarily through a straw, filming himself as evidence in case the police thought we’d forced him. My stomach lurched; there was no going back.
Death doesn’t come straight away, so as the medicine took hold, the world was still. Dad lived for another two hours, with Mum and I by his side. The intervals between his breaths got longer. I kept glancing at the clock and looking back to Dad’s chest, feeling relief every time it rose and fell, then berating myself for holding on to hope. His last breath was a wisp – a quiet, dignified end. Mum and I gripped each other tightly as we sobbed. When it was time to go,
I felt glued to the spot; I couldn’t bear to leave Dad alone.
On the flight home, people stared at us, wondering what could possibly be so wrong. Minutes felt like hours as we waited for take-off in silence. My mind rushed back to Dad’s room. Then I glanced at his empty seat. I looked out of the window and thought, ‘I wish I knew where you were.’
Life after Dignitas
Back home, I was engulfed by a wave of devastation and didn’t leave the house for days, while a steady stream of flowers and family flooded the living room. When
I went to the care home to clear out Dad’s things, the staff’s jaws dropped as I told them why he wouldn’t be returning. In December, Mum went back to Dignitas to collect Dad’s ashes and, at the end of January, we held a funeral and celebration of his life. Many of the 100 guests were blindsided by how Dad died, so I read a passage he had written explaining his decision. I rattled through the words, suppressing the lump in my throat: ‘People might not agree, but this is my life and I want control over my death.’ We scattered Dad’s ashes at a tree we’d planted for him on Hungerford Common, five minutes from our house.
A few people disagreed with Dad’s choice and a couple of my friends struggled to understand why he wanted to die, but at the time of Dad’s death, he was close to needing a feeding tube. In that situation, who would rather watch their loved one suffer over having a dignified, pain-free death at the time they choose?
Campaigning to change the law is our last act of love for Dad. We want terminally ill people in the UK to be able to choose when they end their lives, and we promised him we would put that into action. It is heartbreaking to think that Covid restrictions might have prevented people from getting to Switzerland during the pandemic. It is more important than ever that terminally ill people can have the option my dad had here at home.
With the help of Dignity In Dying, Mum has been heading up a local campaign group and she has helped to change the minds of two MPS in our area. In July 2019, we went to London to hear parliamentarians debate the issue. The message seemed to pierce through – ultimately, everyone wants the best for the people they love. Since Dad died, New Zealand, plus states across the US and Australia, have legalised assisted dying. I truly believe we are closer than ever to getting a similar law in the UK, so that families like ours won’t have to suffer.
Sometimes, if I’m having a bad day, I’ll go and sit under the tree we planted for Dad and talk to him. Right now, the trunk is thin, but in years to come, I imagine looking up at its sprawling branches and knowing Dad is there with me.