I wish I’d understood more about my parents’ illness
The TV presenter and actor tells Christine Fieldhouse how he watched both his mum and dad succumb to Alzheimer’s
Whether playing manservant Baldrick in the 1980s sitcom Blackadder, presenting the history programme Time Team or walking the River Thames for one of his more recent documentaries, Sir Tony Robinson has kept us enthralled with his quick wit, comic timing and improvisation.
But behind the laughs and entertainment is a man who spent parts of three decades watching helplessly as his beloved parents – Leslie and Phyllis – fell under the horrifying grip of Alzheimer’s disease, leaving him feeling “alone, inept and angry”.
Now 74, and a celebrity supporter of Alzheimer’s Society, Tony is campaigning for better care for sufferers, and recognition and support for their forgotten army of carers.
This month he’ll take part in the charity’s Memory Walk in London’s Regent’s Park to raise awareness and funds to help people affected by the brain disorder, which destroys memory and thinking skills.
“People want to shut their eyes and their ears to Alzheimer’s because it seems a big intractable problem,” he says. “We need a sense of comradeship to keep it top of the agenda. We’ve seen from Covid how it’s possible to globally mobilise the medical profession. Together we can move mountains.”
Tony, who lives in West London with his wife Louise, was “totally ignorant” about Alzheimer’s when his father first showed symptoms in the 1980s. “I was down in Bristol when my mum rang in the middle of the night in great distress,” he recalls. “My dad was behaving very strangely. He wanted her to take all the cups out of the cupboard and put them so the handles were facing north-west. She started crying because she didn’t know which direction north-west was.
“I was 120 miles away and I felt completely powerless.”
Ironically, it was his father, a local government officer, who had taught Tony the art of thinking on his feet from the age of 12.
“We would have logical arguments about things like nuclear disarmament and apartheid,” he says. “He taught me to improvise.”
But once Alzheimer’s struck, the bright, capable father Tony knew slowly faded away.
He says: “You didn’t get a proper diagnosis in those days. We vaguely knew dad had something called Alzheimer’s. He was on medication to stop him becoming agitated, but in retrospect, I realise a lot of his agitation was fear because he was in a situation he didn’t understand and had no control over.”
For the family, there was frustration – and anger – that Leslie could go from being calm and lucid to uncontrollable. Yet he always recognised Tony, and his grandchildren Laura, 43, and Luke, 41.
“My dad had a couple of minor heart attacks and a mini stroke,” says Tony. “He died in 1989 at 76. It happened very quickly. It was the best way out for him. And I saw the mask of terror leave his face and my old dad came back to life. On his death certificate it said he’d died of a stroke. They didn’t put Alzheimer’s on death certificates then.”
Just a few years after Leslie’s death, Tony’s mum Phyllis, a shorthand typist, started to become more absentminded. It was after she underwent an operation for varicose veins in her legs that her health deteriorated.
“Something went wrong with the anaesthetic,” says Tony. “We don’t know what. Shamefully, the hospital lost the notes. Mum was at death’s door for a number of weeks. When she came back to consciousness, she was fine for a couple of weeks, but then she slipped into full-blown Alzheimer’s.
“I realised I was going to have to watch my mother go the same way as dad, but by that time – the 1990s – I had a bit more knowledge about Alzheimer’s. I was kinder and more understanding to my mum. That’s the final present my dad gave my mum.”
Phyllis was in a care home for eight years before her death in 2005. A few weeks before she died at the age of 89, she agreed to be filmed for a TV programme Tony Robinson: Me and My Mum. “She thought of it as a nice thing,” recalls Sir Tony. “She’d been into amateur dramatics for most of her life. At last, she had the starring role.
“I didn’t feel guilty that I couldn’t look after my mum, but I did feel guilty that I didn’t understand more, that I didn’t go and see her every day, that I sometimes got irritated with her, that I wasn’t firmer with the hospital.”
Yet the lessons Tony learnt now stand him in good stead as a charity supporter. He says: “I have so much respect for the carers who keep soldiering on through the biggest crisis of their lives. I can’t do anything about the fact that their loved ones have this disease, but I can tell them how important it is to look after themselves and to get some respite.”
With both parents felled by the condition, which currently affects 850,000 people in the UK, Tony is careful about his own health. “I’m fatalistic,” he confesses. “If Alzheimer’s happens, it happens. But there are certain things I know I should do. For example, I know I shouldn’t carry too much weight.”
A regular walker, he and Louise got a rescue West Highland Terrier, Holly Berry, from the RSPCA in Derby, in March. Since then, he’s lost two stone.
He goes to the gym when he can and he regularly reaches 10,000 steps a day.
He’s also keen to keep his brain active, and has been busy making documentaries, including three Channel 5 series – Around the World by Train, The Thames: Britain’s Great River and Tony Robinson’s History of Britain.
“Being engaged mentally is so important,” he laughs.
“It’s vital that I have a lot on my plate.”
Take part in your own Memory Walk in September and help Alzheimer’s Society. Sign up at memorywalk.org.uk
‘‘ He wanted all the cups put so that the handles were facing north-west