‘I love life’: The man who has scheduled his dying so he can take pleasure in residing | Health | USAEMALL.com

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. At the time, he was working as an education consultant and began receiving feedback from his clients that his emails to them made no sense. “I looked at the things I’d written to them, and I knew that something was going wrong. The spelling was totally off,” he recalls. “I’d turn my computer on, and all of a sudden it was tea time, and hours had gone by without me knowing.” He realised that he was “losing time” and often didn’t know what he was doing while in the middle of a task.

Once, he drove to a Scottish village to go on a hike. As he put on his waterproof gear in the pouring rain, he suddenly had no idea where he was or what he was doing.

Knowing something wasn’t right, he got a medical assessment.

Pandolfo feels it’s ironic that he has such a clear memory of being diagnosed with Alzheimer’s. It was March, and there was a little tree on the wall of the reception area of the clinic made of pieces of paper on which patients had scribbled down their wishes. “I wrote ‘peace’ on a little note, stuck it on there and went into the doctor’s office,” he says, smiling wryly. He knew the news was bad when he saw that there were two doctors seated inside with a box of tissues in front of them.

Even on such a sombre occasion, he couldn’t resist cracking a joke. “I’m very flattered!” he replied when one of them asked him, “Are you on your own?” responding to the question as if he had been propositioned.

A couple of weeks after his diagnosis, Pandolfo contacted an assisted dying centre in Switzerland.

He had to submit his medical records, two evaluations by medical professionals, other biographical details and a personal statement. Six weeks later, he received an email telling him his application was successful. “I just thought, the world has been taken off my shoulders. I can now start to live again. I felt like Lazarus rising from the dead,” he says.

“I don’t want to die,” Pandolfo explains with a smile. “I love life. I have always enjoyed it. But if I’m going to have no autonomy with Alzheimer’s, then life is like being swept down a river and trying to grasp a blade of grass.”

Had his application not been approved, he says, he would have taken his own life in 2017 when he received the prognosis of less than five years to live. He is relieved that was a last resort he didn’t need to pursue. He sees suicide for someone like him with a progressive illness as an act of desperation when no laws offer a dignified exit. “I want to die in a way that is respectful to myself and to others,” he explains. He pauses, then adds, “When I got the approval, I thought: My life’s been saved. I don’t need to kill myself.”

A mother’s decline

Breaking the news about his Alzheimer’s to his mother was harder than receiving his diagnosis. He avoided it for three weeks. He told his younger sister first, half-hoping she might let it slip. “There’s a natural order of things where your mum and dad go before you. Plus it felt raw that dad had gone with the same condition,” he says. “But I phoned her up anyway. The first words out of her mouth were, ‘I guess you’ll be applying to Switzerland then.’” When he replied in the affirmative, she told him, “Good lad, well done.” Her acceptance of his decision meant a lot to Pandolfo, especially given her strict adherence to Catholicism. “It was a really bittersweet moment for both of us,” he says.

When Marie developed dementia herself in 2017, watching her lose her mobility and lucidity filled Pandolfo with dread and sadness. “It was painful to see her like that,” he says. “The only good thing about all of it was that she was surrounded by people who love her.”

At times when he visited her, he would sit by her side and watch her sleep. As she took each breath, he remembers secretly wishing it would be her last so that she would be put out of her misery. “I was gutted when she died,” Pandolfo says. “But at the same time, while I know it sounds callous and horrible, I felt relief.”

‘Everyone deserves a dignified death’

Caring for Vincent consumed Pandolfo for years. “I no longer knew who I was,” he explains. “Then my diagnosis came, and Mum also became ill. That was when I started to ask myself: Who am I? What am I doing, and what more can I be doing?”

Pandolfo took a pragmatic approach to the next stage of his life. “I’m very good at organising, I’m reasonably good at public speaking, and I know older audiences because of my work,” he says, referring to his previous jobs in trade unions and driving buses. “If I can’t work any longer, then I’m going to devote my life to become a volunteer, to get the law on assisted dying changed in this country.”

Over time, he connected with several grassroots groups for people who shared his views and began sharing his experiences at public events advocating for assisted dying. Today, he is an active member of a UK-based Facebook group called The Right to Die With Dignity and receives messages on social media from people who are terminally ill or have degenerative diseases like Alzheimer’s who are seeking his advice.

Sometimes he accompanies people to die in Switzerland. He will spend their last days with them, holding their hands as they share a last message with their children before ending their lives.

In June, the Terminally Ill Adults (End of Life) Bill was passed by the UK House of Commons by a narrow margin of 314 to 291 votes and has now moved to the House of Lords for further review. Supporters, including the Dignity in Dying campaign, have celebrated it as a landmark step towards compassion and autonomy for terminally ill individuals. But opponents, including religious groups, disability advocates and medical bodies like the Royal College of Psychiatrists, have raised serious concerns. They caution against weakened safeguards, the risk of coercion, the strain on the UK’s state-run National Health Service, the ethical difficulties of placing responsibility on medical professionals to help end the life of an individual and insufficient debate time.

If passed, the bill would allow people above 18 living in England and Wales who have been registered with a general practitioner for 12 months, are mentally competent and “reasonably expected to die within six months” from a progressive illness to submit an application to end their lives.

Pandolfo says the six-month threshold is exclusionary for those suffering from neurodegenerative diseases like his. “If I’m six months from death, I wouldn’t even have the mental capacity to qualify for it,” he says. While a YouGov survey from May indicates that 75 percent of Britons are in favour of legalising assisted dying, until the law is changed, an average of one person per week travels from the UK to Switzerland to die.

The cost is about 15,000 pounds ($20,500). “Everyone deserves a dignified death, not just people who can afford it,” Pandolfo says.

‘Losing time’

Days after our meeting, Pandolfo undergoes surgery to remove kidney stones.

Once back in the quiet of his home, he reflects on the uncertainty of living with Alzheimer’s over a video call.

“I treat it like a relationship,” Pandolfo says, looking contemplative. “Sometimes you find equity. Other times, the other party has more power. It’s about compromise and working it through. I try not to focus on it too much.”

Meanwhile, he has tried in the last decade to not overload himself with intellectual work. “It’s like decluttering,” he explains. “Because I really do see my brain as a computer. It takes in lots of stuff, and I have to decide what information I need to retain and what to leave out. My medication, my routine, names of people close to me.”

He still periodically experiences the feeling of “losing time”. “It’s one of the biggest problems I’m aware of in terms of my memory,” he says. “For example, if I look at something I’ve written in a notebook, I haven’t got a clue whether I wrote it down last month, last year or this morning.”

There will come a time when he has to make the difficult decision to go to Switzerland, Pandolfo says. “I’ll have to be mentally fit enough to know when it’s time to go, so the right time is always going to be too soon,” he says.

He has run through this scenario many times in his head. If he could, he would choose to die on his sofa at home facing the garden. “I’d open up my house, have people drop by through the day whenever they want. There’ll be music the whole time, and I’ll prepare lots of vegan food,” he says, laughing. But because of the laws in the UK, he says he will settle for a “small celebration” in Switzerland with whoever decides to accompany him on his final journey. “And the last song I’ll listen to”, he adds brightly, “is Time Warp from the Rocky Horror Picture Show.”

For now, he hopes to ride a motorcycle again once doctors have figured out how to treat pain in his leg. There are still plenty of concerts he wants to go to. He refuses to let Alzheimer’s constrain how he spends the rest of his life. “I don’t want to be miserable. I want to be happy,” he says. “And I’m very lucky because all my life I have found happiness in everything, even just looking out the window.”

Dying and the way that somebody dies are two different things, he adds. “Now that I know I won’t have to suffer a long, painful death, I fear neither.”

If you or a loved one is experiencing suicidal thoughts, help and support are available. Visit Befrienders Worldwide for more information about support services.