This story contains references to suicide and discusses assisted dying.
Morecambe, United Kingdom – It is an overcast day in late July. An hour before our scheduled meeting at Lancaster train station, 71-year-old Alex Pandolfo sends a message on WhatsApp.
He writes that despite our video call two weeks ago, he cannot remember what I look like. “I hope you don’t think this rude. … If you see me, please just give me a kick,” he adds in jest.
When I approach him on the platform, he hesitates for a moment, then a tentative smile breaks across his face, widening as recognition sets in.
To make sure he made it to the train station that morning, Pandolfo set a couple of alarms the night before. When the first rang at 7am, he staggered out of bed and glanced at a picture of Morticia Addams painted by a close friend and a stuffed toy in the shape of a Humbug sweet that his sister had bought him as a joke because of his dislike of Christmas. “Every morning is precious,” he says, “and it’s lovely to wake up and be surrounded by things that remind me of the people I love.”
Pandolfo then made coffee and checked his emails until another alarm told him to drive to the station. These alarms, linked to his phone calendar, tell him what he is doing and who he is meeting. “I find it really hard to process new names and faces, so I need to keep track of them,” he explains. “It’s easier to remember things from way back.”
‘Never been afraid of death’
In 2015, Pandolfo was diagnosed with Alzheimer’s disease, the most common type of dementia, a term referring to a progressive cognitive decline. It causes memory loss, deterioration in the use of language, and alters mood and behaviour. There is no known cure.
Specialists testing Pandolfo, then 61, gave him three or four years to live with the possibility he might survive for a decade but with complete loss of lucidity and the need for permanent care. Disease progression varies among individuals. Some studies say people usually live five to eight years after diagnosis, but others can live up to 20.
Pandolfo’s condition has remained stable over the past decade. “What can I say except I don’t know why?” he says wryly. “The mind is a very strange thing.”
For now, Pandolfo sets about 10 alarms a day when he knows he has something to do. Notifications tell him when to go grocery shopping and remind him 10 minutes later in case he forgets. If he’s meeting his solicitor, an alarm will tell him when to leave, then another will remind him of their meeting time and the person’s name. When cooking in the evening, he sets several alarms on his Alexa device, which tell him to check on the onions in the oven or to start chopping potatoes. “If I have people coming over for a meal, then I create a menu on the Notes app on my phone so I don’t forget what I’m preparing,” he says. “But I delete these notes whenever I create a new one, so I don’t get confused.”
Other than hosting dinners at home for his friends and close family, he keeps busy – organising activities for the local chapter of the Manchester City supporters club and attending protests in nearby Lancaster in solidarity with Palestine and for migrant rights. On balmy days, he takes a chair to the seaside, just a few minutes away from his home, and sits there enjoying the breeze. Throughout, alarms intermittently sound.
But one day, the alarms won’t be enough. As someone who has now outlived his expected lifespan, Pandolfo believes that each new day cannot be taken for granted. He says a sudden slump in his mental abilities may come at any time.
When that happens, Pandolfo, a vocal, active advocate of assisted dying, does not want to continue living.
“I’ve never been afraid of death,” Pandolfo says. “I’m afraid of not having any quality of life.”
‘Freedom to be’
Pandolfo lives alone in a neat, single-storey house in a leafy residential neighbourhood of Morecambe. Brightly coloured concert posters from rock bands like Fleetwood Mac, Pink Floyd and Led Zeppelin adorn his living room walls – portals to memories that make his eyes light up. “I was 11, ice skating in Manchester,” he says. “Barry McGuire’s Eve of Destruction came on – all that conflict and war, the Middle East. It starts with this bass drum banging, like a motorbike engine.” The song affected him so much that he came off the ice and started crying.
Pandolfo estimates that he has been to thousands of concerts. “My absolute favourite concert was Cat Stevens in 1972 at the Manchester Opera House,” he says.
“Music is heartbeat and life,” Pandolfo explains. For him, it is also political.
“It’s in my blood,” he adds, grinning. “My mum’s side of the family is Irish. My dad’s side is Italian. I grew up listening to anti-Mussolini and Irish Republican songs.”
He gazes up at posters of Hair, the musical that he says shaped his worldview. Hair follows a group of free-spirited young people in New York City during the Vietnam War draft and delves into the tension between personal freedom and social expectations. “When I first saw it, I was blown away,” he says. “Everything in it shaped how I feel about other people’s freedom to be who they choose and do what they want.”
It is this sentiment that underpins Pandolfo’s support for what he sees as another kind of freedom – the right to die. For now, he leads an active life. But when the time comes, he will fly to Basel, Switzerland, where assisted dying, but not euthanasia, is legal. He has secured approval from a Swiss assisted dying association to end his own life. Pandolfo says having this choice allows him to live life more fully.
‘I’d have gone to jail’
When Pandolfo was 14, he was expelled from school for headbutting a geography teacher who insulted his father, Vincent. He chuckles when he reminisces about how, after he was kicked out of school, his father spotted him at the bus stop and was unfazed as he stopped to pick him up.
But his cheerfulness vanishes when he speaks about how both of his parents were diagnosed with dementia – Vincent in 1999 at age 70 and his mother, Marie, in 2017 at 84. Watching them succumb to the disease cemented Pandolfo’s beliefs about assisted dying. Each lost not just their memories, he says, but “their dignity, their freedom, theirselves”.
Pandolfo was particularly close to Vincent, whom he worked alongside after being expelled from school. The two bonded as they spent their days driving around, listening to the radio and delivering coal to people’s homes.
He remembers his father as “superbly fit”.
“He even ran a marathon at the age of 65,” Pandolfo recalls. “So when he got MSA [multiple system atrophy] in 1996 and then dementia three years later, he was very frustrated. He couldn’t run, drive or do anything he loved. It broke my heart to see how quick the deterioration was.”
The dementia turned Vincent into a stranger. “He was violent and aggressive and yet also vulnerable at the same time,” Pandolfo recalls.
Vincent was bed-bound for the last year of his life when he had to be admitted to a care home.
An intensely proud man, Vincent had been in favour of assisted dying long before his illness. “He used to say, ‘If I ever end up like this [no longer himself], just do me in,” Pandolfo recounts.
He had seen his father cry only twice. “The first time was at my grandma’s funeral. I was only young then. The second time was when he soiled himself and lost the ability to take a shower on his own,” he says.
“For about three or four years, he never called me Alex,” Pandolfo recalls, his voice suddenly quiet. “I was either his brother or this other guy he knew called Billy. But we also had conversations about stuff he was doing as a kid, which he never told me about before.”
While Pandolfo says these interactions brought him closer to his father, they also filled him with sadness. Although he never probed these memories, with Vincent’s advanced dementia, it was difficult to tell which recollections were real.
Towards the end of his life, Vincent would beg his son to end his suffering. “He said, ‘Help me, I just want to die,’” Pandolfo says.
This was when Pandolfo first looked into assisted dying. Because it is illegal in the UK, he researched Switzerland, which legalised assisted dying in 1941 and was one of the first countries in the world to do so. Individuals are provided with the means to end their own lives in a clinical setting as long as the act is free from selfish motives. However, the person requesting assistance to die must be of “decision-making capacity”. Vincent’s dementia had progressed to a point at which he would not qualify.
“If someone had said, ‘If you can give him that tablet or inject him with that needle, he’ll die in peace,’ I would’ve done it. I’d have gone to jail, but I was not prepared to continue seeing him suffer,” Pandolfo explains, his voice resolute.
Vincent died in 2004 at the age of 75. It has been 21 years since his death, but his final words before losing the ability to speak are still searing. In those last stages of dementia, his father barely spoke at all, but he looked directly at his son when he told him: “You said you’d never let this happen to me, and you have.” Vincent never spoke again. “Those were the last words he ever said,” Pandolfo explains quietly, turning away.
Although he insists he is not haunted by those words, saying he knows his father “was not really there any more”, the weight of that accusation still troubles him. “I struggled with that a lot,” he says.
‘Start to live again’
In 2015, Pandolfo was showing symptoms of unusual behaviour