The changes were subtle at first, but Phil O’Neil-Dwyer couldn’t help but notice there was something different about his mother Joyce.
While she had always been caring, warm and organised, something seemed off.
‘Mum was never a cynical person but she started coming home complaining about others at work. It was like she was always flustered,’ Phil, 35, from London, tells me.
As the months rolled by, she became forgetful and began repeating stories she had already told.
She also had a nasty fall at the pub, leaving her with a bruised head.
Then, one night in 2019, two years after he first noticed the changes, Phil received a devastating phone call.
‘I have dementia,’ Joyce told her only child.
She was 58. Phil’s world stopped as she explained how, after seeing a doctor, she had been diagnosed with prefrontal lobe early-onset dementia.
Phil O’Neil-Dwyer (right) was shocked when his mother Joyce (centre, with her husband on the left) was diagnosed with early onset dementia at the age of 58
The diagnosis shifted Phil’s perspective on life. Rather than hustling to get ahead financially, he now prioritises time with his young family. (He is pictured with partner Lucy and their kids)
‘I remember taking the call in the bedroom… My kids would have been two and a newborn at the time.’
‘Mum wasn’t just upset for me, but for my kids too – she wanted to be there for them but knew she wouldn’t be. That was the toughest part,’ the father-of-two adds.
‘While it was a shock, on the flip side, we now knew what we were dealing with and finally had some answers.’
Alzheimer’s is often caused by a genetic mutation and, sadly, Joyce’s father had also been diagnosed in his 80s.
In the years since her diagnosis, Joyce’s symptoms have become more severe. She has started hallucinating and talking to people who aren’t there.
‘My mother would start to argue with them. I think I found it difficult because, well, it’s not a go-to symptom in my head. Do you play along? Do you call it out?’ Phil says.
‘One day we found her out in the street shouting at someone in the front garden who didn’t exist. Because of her age, anyone who was looking would simply think “nutter” rather than think it was dementia.
‘I don’t think most people even realise it is a symptom at all, and certainly don’t think about it happening to a woman in her late 50s.’
As well as trying to cope with his mother’s condition, Phil is now terrified he has also inherited the gene and will face a similar fate in the future.
‘In 20 years I would give up all the money to go back to the life and time I have with my children right now, so I’m prioritising that. The truth is, dementia robs you of time, not money,’ says Phil
‘I immediately thought I might only have 20 years left to build a good foundation to know my family will be okay,’ he says.
‘So, for the last six years, it gave me a real drive career-wise. I really knuckled down, getting promotion after promotion to set us up financially.’
It has meant late nights and weekends working while his partner Lucy takes care of their young children.
Phil also made the decision to put their house in West London on the market and rent somewhere cheaper, so that he can afford to go travelling with his children.
A twist of fate earlier this year fast-tracked those plans.
‘For Valentine’s Day, I picked up a scratch card and a bottle of wine. We were actually meant to go to a concert but sold the tickets and stayed in instead,’ Phil recalls.
The scratch card sat on the kitchen bench for a few days but when Phil finally got around to playing it, he was stunned to have won £50,000 (AU$104,000).
That day, he received a WhatsApp message from a man eager to buy his house. It was a significant double windfall.
‘As soon as we won the money, we had a deeper chat about [travelling as a family]. I realised I had been focusing on the wrong things for too long. I missed out on so much time when the kids were young – I’ll never get that back.
‘In 20 years I would give up all the money to go back to the life and time I have with my children right now, so I’m prioritising that. The truth is, dementia robs you of time, not money.’
The family-of-four sold their home, car and unwanted belongings, packed their bags, said their goodbyes and flew to Japan on May 14.
They’re currently in Taiwan where they plan to stay for a month. Next on the agenda is Vietnam, Thailand, then Sri Lanka.
Phil and Lucy have a goal to visit 50 countries before they turn 50, which they will document on their website Winging It Worldwide.
While the experience and time with his family has been unforgettable, Phil feels guilty every day about leaving his mother behind.
‘It was a hard decision, but one thing it has made me realise is that life is too short to be working a job you hate or missing key family time to chase a career,’ Phil says.
‘My kids are five and seven so there’s only a few magical years where they actually want to be my friend and hang around with me.
‘It tears me up to be away, but there’s a high chance I’ve inherited the gene and I’ve decided to live life to the fullest because you never know what’s around the corner.’
The reality of the situation is that Phil’s family don’t know how long Joyce has left.
She can’t drive or leave the house alone, and she can’t cook or take care of herself the way she used to.
‘Dad retired around the same time mum was diagnosed, so he’s had no time to enjoy himself. I feel guilty about that too because he’s taken it upon himself to be there for mum. He’s a saint, it’s the type of person he is,’ Phil says.
‘She was the best mum and my best friend. Even though she’s still here, I miss everything about her. It’s that level of affection and connection that’s been lost.’
Phil knows if they do need to return home swiftly, they can book a flight immediately.
While he is afraid of what the future holds, he is living in the present more than ever before, and is prioritising his young family – even if it makes him feel conflicted.
