Hayley O'Rourke knew something was wrong when her father, Tony, reacted indifferently to the news of her divorce. Instead of offering comfort, he said he needed to get wormer from the vets. The 39-year-old from Bristol recalls that her dad, once funny and outgoing, has become unrecognisable due to Alzheimer's disease.
Early signs of dementia
Ten years ago, Tony moved in with Hayley and her then-husband. She noticed unusual decisions at work and struggles with social cues. He scratched his car on a neighbour's wall and drove off without stopping. It took him four years to see a GP, despite Hayley's encouragement. He dismissed symptoms as old age, but Hayley knew his personality was changing.
Three years ago, Tony received a diagnosis of Alzheimer's and was told to surrender his driving licence. He became aggressive on the phone, as it represented his freedom. He still does not accept the diagnosis.
Daily challenges of caregiving
Hayley works full-time while caring for Tony, co-parenting her two children, Niamh, 13, and Tadhg, 10, and building a life with partner Adam and his three children. Each morning, she ensures Tony has showered, prepares breakfast, and administers medication. She then turns to the children, the dog, and the cat before starting work. Some days she works from home, using cameras to check on her dad during meetings.
Tony wears an AirTag but remains a constant worry. During a heatwave, he left the house alone, risking dehydration. Recently, police found him walking onto a motorway sliproad, telling them he was trying to get home. Once a hands-on grandad, Tony now finds children stressful and sometimes tells them to shut up.
The sandwich carer epidemic
Hayley is one of 1.4 million sandwich carers in the UK. On Instagram, she documents harsh realities: hiding his razor when he shaved excessively, him demanding to be taken to the airport on a Saturday morning, and trying to feed the cat grapes. She feels she has already lost her dad, recalling how he claimed to have built the Clifton Suspension Bridge.
“People say caring for your loved ones is a privilege, but I don’t find it a privilege, because I know how much he would hate who he is now,” Hayley says. “Some days you become snappy. The reality of doing it day in, day out, with normal life thrown in, dealing with children, work and relationship pressures – it is extremely difficult.”
As an only child, she cannot book an overseas holiday due to lack of guaranteed care. This summer, the family will camp in Cornwall for a week, leaving Tony with a carer costing more than their monthly mortgage.
Making a difference through fundraising
To cope, Hayley runs and has raised over £10,000 for the Alzheimer’s Society by completing seven half marathons in seven days and a 24-hour race. In September, she will run 100 miles in five days for charity.
“I find it really, really overwhelming,” she admits. “There is a lot of juggling. The mental load is heavy. But I’m an extremely resilient person – I’ve had to be. I’m really positive. I just keep going, probably to my own detriment.”
