Hayley O'Rourke knew something was wrong when her father, Tony, reacted indifferently to news of her divorce. 'My dad as I knew him would have said: "Oh my gosh, are you okay? What do you need?" But he just replied: "I need to go and get the wormer from the vets."'
The 39-year-old from Bristol had been incredibly close to her 76-year-old father, who raised her from age nine after her parents split. They even worked together at Airbus, with Hayley in HR and Tony as an aerospace engineer. 'He was funny, outgoing, he helped me out with everything. He was incredible – just the best dad,' she recalls.
A gradual decline
Early signs emerged about a decade ago after Tony moved in with Hayley and her then-husband. He made unusual decisions at work and struggled with social cues. Once, 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 told me he'd been to the doctor and everything was fine. Or I'd book him an appointment and he'd cancel it. He dismissed it as old age, but I knew it wasn't,' she says.
Three years ago, Tony received a devastating diagnosis of Alzheimer's disease and was told to surrender his driving licence. 'He got extremely aggressive on the phone. It cut him deep, because that was his freedom. He didn't accept it. He still won't to this day. He does not think there's anything wrong with him,' Hayley recalls.
Daily challenges
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. Her mornings start with ensuring Tony has showered, preparing breakfast, and administering medication, before turning to the kids and pets. Some days she works from home, using cameras to check on her father between meetings.
Tony wears an AirTag but remains a constant worry. During a heatwave, he left the house alone, risking dehydration. 'Not too long ago he was found by the police walking onto a motorway slip road. He told them he was trying to get home, which is really sad,' Hayley says.
Once a hands-on grandad who loved children, Tony now finds them stressful and sometimes tells his grandchildren to 'shut up'. 'He used to love company, loved parties. Not any more,' she adds.
The sandwich carer reality
Hayley is one of 1.4 million sandwich carers in the UK balancing care for a parent and children. On Instagram, she documents harsh realities: hiding his razor when he shaved until his face was raw, him demanding to be taken to the airport on a Saturday morning, or trying to feed the cat grapes. 'The other day we were over Clifton Suspension Bridge, and he told me he built it,' she says. '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.'
As an only child, Hayley cannot book overseas holidays 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 payment.
Finding strength
To cope, Hayley runs and has raised over £10,000 for the Alzheimer's Society, completing seven half marathons in seven days and a 24-hour race. In September, she will run 100 miles in five days. '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.'
