My darling Helen is just vanishing before my eyes
Motor racing legend Jackie Stewart on how he’s devoting his life to finding a cure for dementia – the disease destroying the woman he fell in love with for her sharp mind
SIR Jackie and Lady Stewart have always had a dashing air about them, and when they took their places in the Royal Box at Wimbledon this week it seemed that nothing had changed.
Lady Stewart was the picture of elegance in a red, ruffled blouse and designer sunglasses, her blonde hair immaculate. She is 75 but looks very much younger than her years.
Yet how cruelly can appearances deceive. Behind the smiles and apparently relaxed demeanour, the couple have been adjusting to a profoundly painful new reality.
Two years ago, Sir Jackie reveals to the Daily Mail today, Helen was diagnosed with dementia — and since then Sir Jackie has watched with a sense of helplessness as his wife’s condition has deteriorated.
Today, Helen’s short-term memory is ‘ shot’ and her mobility is impaired. Even climbing the stairs is a challenge, and she has roundthe- clock carers to help her with day-to-day tasks.
Sir Jackie, like thousands of others in similar situations, has been experiencing the anguish, bewilderment and frustration of living with a spouse who looks the same, but is profoundly different.
A person who acts differently and speaks differently, who can seem clumsy and be difficult or even embarrassing. It has been deeply painful for Sir Jackie to witness this decline in his childhood sweetheart, the woman to whom he has been happily married for nearly 54 years.
But, at 77, he remains one of life’s doers. Never one to think small, today he is launching Race Against Dementia — a global charity to raise money for research with the aim of ultimately eradicating this cruel disease, which historically has been woefully underfunded.
That’s quite a challenge, but it is one Sir Jackie is rising to, aided by his fortune, indefatigable energy and a gold-plated contacts book.
In the three months since he came up with the idea, he has persuaded major names including Sir Martin Sorrell, CEO of advertising giant WPP, philanthropist Dame Vivien Duffield and Edsel Ford II, greatgrandson of Ford motor car pioneer Henry, to become trustees.
During our interview at the Royal Automobile Club, of which he is a patron, in London’s Pall Mall, he is wearing the dementia campaign’s motif — a broken ‘D’, dreamt up by Sir Martin — on the lapel of his smart blue blazer.
Sir Jackie has also amassed a variety of experts in medicine and pharmaceutical research who want to help, and tells me he has given £1 million of his own money to ‘ start off ’ the charity, which this week is due to launch a website, raceagainst dementia.
com. Clearly, he is now a man on a mission.
‘My wife was the original pit lane girl, my professional stopwatch — timing my laps to the millisecond,’ says Sir Jackie.
‘But I have watched her change before my eyes over the past two years. Her razor- sharp mind was one of the things I fell in love with, and it’s her mind that is vanishing.
‘Her short-term memory is shot. When I have to travel somewhere, she will ask me ten times in a day where I am going.
He adds sadly: ‘Somehow I knew there was a problem when Helen stopped putting on her watch. It sounds silly but she put on the same watch every day, and all of a sudden she didn’t.
‘When she went to check the time and the watch wasn’t there, she would think she’d lost it or that it had fallen off.
‘At first I thought she was being forgetful, but then she started to forget lots of little things that turned into bigger things.
‘ Since her diagnosis I’ve felt powerless and I knew that I had to do something.’
Before he started the Race Against Dementia campaign, only the couple’s closest friends and family knew about Helen’s dementia.
‘ Helen said to me before this interview, “You’re not going to tell them I have dementia, are you?” ’ says Sir Jackie. ‘She’s a proud woman. But I told her that I had to. There was no choice if I’m going to do this.
‘Lenin said there are no problems, only solutions. There are breakthroughs in medicine. Think how many people can now be cured of cancer, how many people can live with HIV.
‘When you’re dyslexic, as I am, you think out of the box. I want to look at different ways of doing research to find a cure.’
Crucially, Sir Jackie and his backers have money to help bring that about. ‘I spoke to a friend the other day — no names — and he said, “Jackie, I’m sorry, I can’t help as much as I’d like to but here’s £100,000.”
‘Isn’t that incredible? I am very fortunate to be in this position.’
Sir Jackie and Helen have two grown-up children, Mark and Paul, and nine grandchildren — eight boys and one girl.
They divide their time between their estate in Buckinghamshire, close to Chequers, the Prime Minister’s country residence, and a house in Switzerland.
For most of the marriage, theirs has been a gilded lifestyle with lots of travel, luxury and hobnobbing with celebrities and royals — Princess Anne has been a close friend for 40 years.
BACk in the early days, Sir Jackie and Helen were the poster boy and girl of Formula 1 racing. He won 27 races out of 99 starts and was world champion three times. In 2001, he was knighted.
After retiring in 1973, Sir Jackie cut a series of commercial deals (being the first driver to spray a bottle of champagne on the podium brought him a contract with Moet Hennessy) and today he has an estimated fortune of £42 million.
But there have been dark periods, such as in 2000 when their son Paul had a form of non- Hodgkin’s lymphoma diagnosed.
Not long after that, Helen learned she had breast cancer, and Sir Jackie had to have a pre-cancerous lump removed from his face.
‘It was a terrible time, we nearly lost Paul and then Helen got breast cancer. We learnt then that early diagnosis is crucial.’
His wife and son’s cancer treatment was, of course, gruelling — but at least it was available. One of the shocks and frustrations of Helen’s dementia diagnosis was Jackie’s discovery that there is no treatment for the condition, despite dementia affecting some 850,000 people in Britain alone.
The type Helen has is called frontotemporal dementia ( FTD), a relatively rare form of the disease that is thought to account for less than 5 per cent of cases.
It most often affects people between the ages of 45 and 64, but three out of every ten people with FTD develop it at an older age. It is caused by damage to cells in the frontal and temporal lobes of the brain, which regulate our personality, emotions and behaviour.
The main trouble in Helen’s case is that FTD has severely affected her short-term memory.
‘She forgets stuff,’ says Sir Jackie. ‘She won’t remember that I phoned her, for instance, or what I was doing last night.
‘Before she was diagnosed, I would sometimes get a bit annoyed, thinking, how could you forget that? There were lots of missing umbrellas, lots of missing things.
‘Helen used to be a brilliant cook, she would cook for 20 people. But she couldn’t do that now.’
Physically, she is frail. ‘Her mobility isn’t as good as it was and that is depressing for her. We’ll manage to go for walks with the dogs but she gets tired.
‘We’re in the fortunate position of being able to afford carers. There are two of them. She has 24-hour
care and wears a special bracelet. ‘If there’s a problem, if she falls or something, she presses the bracelet and they’ll be there just like that.
‘We’ve had to think about things. Helen’s bathroom is now non-slip. We’re very privileged that we can afford to do this. I know others in our situation aren’t so fortunate.’
One of the symptoms of Helen’s type of dementia can be a change in personality. Jackie says this has not been especially marked, but there have been some signs.
He explaIns: ‘ sometimes if she disagrees with what someone is saying, she’ll say, “Oh, you’re stupid”. For whatever reason, the filter in her mind is not stopping her saying something which in normal circumstances she’d know would be embarrassing to the person.’
sir Jackie says his wife struggles to accept her diagnosis. ‘ It’s frustrating. It is so difficult to explain. I have in front of me my wife, my partner, who still has this feisty willpower but is not accepting that she has dementia.
‘she knows there isn’t a cure, and that may be a reason why she doesn’t accept she has the illness — but she is beginning to come to terms with it, I think. she phoned our son Mark the other day, and she said, “I’ve got dementia.”
‘That was the first time I had heard her say that. Before then, she had only told a couple of her closest friends.’
He believes it is important for Helen, and others with dementia, to ‘come out of the closet’ so friends and family can understand why their behaviour has changed.
He compares dementia with his own dyslexia, which went undiagnosed as he grew up in the village of Milton in Dunbartonshire, scotland. ‘There’s frustration and embarrassment,’ he says.
‘It’s like dyslexia. I was 42 when I told Helen I was dyslexic. at school I was perceived to be stupid — I had to believe it because my teacher told me that’s what I was. But you have to come out of the closet.
‘I can’t read or write and I can’t say the alphabet. I can’t recite the lord’s prayer, but I know now I’m not stupid.
‘similarly, Helen is forgetful but in other ways her mind is still sharp, and thankfully she still has her longterm memory.’
During the half century that Helen has spent with sir Jackie, she has filled 18 large scrapbooks with treasured mementos of their life together —photographs, invitations, telegrams and newspaper clippings. ‘ There are pit passes, theatre tickets, menus from Monte Carlo signed by all the fancy folk, telegrams — that shows how old I am. Helen loves looking at them, she hasn’t forgotten those times.’
sir Jackie now intends to devote all his energy to fundraising around the world.
He says: ‘ When I was a racing driver I had to have the best mechanics, designers and management teams. now I’m in touch with the most eminent doctors to accelerate global research into this disease. We want to work towards prevention and cure.’
sir Jackie is desperate to find a cure for Helen but accepts in his heart that it might be too late for her. Yet this, he says, won’t stop him trying his ‘damned hardest’.
Meanwhile, doctors cannot tell him what her prognosis is.
‘all they can say is it won’t get any better. That’s where I step in — I’d give anything to find a cure. I’m facing one of the biggest personal challenges of my life.
‘I want to do all I can to help millions of people around the world avoid this heartache.
‘and I’m focusing on Helen. I want to help Helen feel comfortable in the long term.’
life has changed for sir Jackie and lady stewart, the former golden couple of Formula 1. But they still get out and sir Jackie says their friends were pleased to see Helen at Wimbledon.
‘she enjoyed herself,’ he says. ‘Helen is looking very well, she is still an enormously attractive lady and she likes to dress well.
‘We still go out for dinner every saturday. Helen loves doing that. We’re carrying on.
‘and we’re hoping it’s going to get better — that we’re going to unlock the puzzle.’