• Six members of the Barbara's Revolutionaries team

Life

Run for your wife

Dame Barbara Windsor's husband Scott on her battle with Alzheimer's disease and his mission to run the London Marathon for dementia research

Words: Mark Riddaway

Last year, Scott Mitchell revealed to the world that his wife, Barbara Windsor, has Alzheimer’s disease. This year, he’s running the London Marathon to raise money for dementia research. He talks to the Journal about Barbara’s slow and painful decline, the challenges of being a carer, and the brief respite to be found in pounding the pavement 

Under any other circumstances, Scott Mitchell would not be running the London Marathon—not a chance. “My whole life, the only running I’ve ever done is in the opposite direction to the idea of being a runner,” he says with a grin. “I never had the slightest interest. Not even been on a treadmill.”

In recent times, though, Scott has been confronted by a challenge more daunting than any road race; when your days and nights are spent caring for the woman you love as she slowly falls apart, pounding 26.2 miles of hard tarmac is a walk in the park. For 19 years, Scott has been married to Barbara Windsor, a woman whose charismatic presence on screens both large and small, from the bra-popping ingenue of the Carry On films to the matriarch of Albert Square, has made her a gold-plated national treasure. She’s a local treasure, too—a Marylebone resident for three decades, Barbara is a familiar, friendly face around these parts. “She’s part of the fabric here,” says Scott. “Walking up and down the high street, everyone knows her. At the moment, though, she’s pretty convinced we live in Stoke Newington.” He laughs. Sometimes, you have to.

Barbara has Alzheimer’s disease. And Scott, like hundreds of thousands of other people in the UK who are currently living with a partner or parent in the grip of severe dementia, has had his life turned upside down, as a world that once brought his wife such joy becomes increasingly unfamiliar and distressing to her. “I’m not complaining—the vow says ‘for better, for worse’—but being a carer doesn’t come without its challenges,” he says. “Anyone in this position will tell you, you need the patience of a saint. When you’ve told somebody the same thing 15 times, and 30 seconds later they ask you again—of course, you’re only human and you want to roll your eyes, your stomach is twisting up inside, but you can’t get frustrated or annoyed. For them, it’s the first time the thought’s even entered their head.”

Team on track

A starry team
The thought of running a marathon only entered Scott’s head once, but then stubbornly refused to leave. This year, the charity partner of the London Marathon is Dementia Revolution, a collaboration between the Alzheimer’s Society and Alzheimer’s Research UK, which is raising money to help fund dementia research. The campaign approached Scott and asked whether he and Barbara would be willing to encourage her former EastEnders castmates to run in the marathon. “So that’s exactly what we did,” says Scott, and a starry team began to assemble. “But I suddenly thought to myself, it’s going to be a really poor show if I’m just standing at the finishing line while they all come crawling through.”

That idle thought quickly escalated. “The next day, I went out with Jake Wood and his wife; we took Barbara to the theatre. Jake, who plays Max Branning on the show, is a fit guy who ran a marathon years ago, but he’d told me his running days are over. At dinner, though, he suddenly looked at me and said, ‘If you do it, I’ll do it with you.’ And that was it. We shook hands over a knickerbocker glory, and it went from there. I woke up the next morning horrified at the commitment I’d made—I thought about the reality of running 26.2 miles, which is a hell of a long way—but by then it was too late.”

On his first run, just last October, Scott managed to stagger about a mile and a half. “I was panting, out of breath, dizzy, feeling a bit sick, and I thought, oh boy, what have I done?” Now, though, he’s a man transformed. “Something happened,” he says. “I just took to it. I just love it.” He raves about how much stronger and healthier he now feels—but by far the most important benefits have been felt in his head, not his legs. When people take up running, after those first brutal, breathless weeks of grim slog, something changes. Once the lungs and heart have adjusted to the toil, and the muscles and joints have found a rhythm, that dull, percussive repetition of motion flicks a switch in the brain. A few miles in, the pain and boredom abate, the mind clears and a quiet serenity takes over. “When I run, after a while I go into this place where I can hear my own voice. I can answer myself, I can process everything that’s happening around me. It’s been like a revelation.”

Dame Barbara and Scott

Primary carer
Right now, Scott’s brain has more than enough to process. As an Alzheimer’s patient’s primary carer, the very worst days can leave both of you in pieces—like the time he went to help Barbara out of the bath, and she looked at him, shocked and frightened, and demanded to know who he was. “That was the thing I’d always dreaded happening, and it happened. I said, ‘It’s me, Scott, your husband.’ Instantly she realised what she’d done, she felt awful, got very upset. She broke down, and it was such a horrible moment for both of us. In bed that night, I just cried. I couldn’t hold onto it any longer—my biggest fear had been realised.”

Almost as upsetting as the most horrific moments are the sudden sunbursts of normality that even at an advanced stage of the disease can still occasionally break through the fug, offering tantalising reflections of past happiness. “Even now, at times there’s so much clarity in her—it’s the old Barbara,” says Scott. “I’ll be sitting having a conversation with her and it’s beautiful, like old times. Then in the next sentence she’ll say something that’ll take me straight back into the reality of today, and it’s just crushing.”

Part of the cruelty of Alzheimer’s disease is the glacial pace of the patient’s decline. As the condition progresses, amyloid proteins slowly clump together between the brain’s neurons, disrupting cell function, while tangles of tau protein collect inside those neurons, blocking synaptic communication. Day by day, week by week, along it creeps, like the erosion of a coastline. “It’s such a slow process, that’s the awful thing,” says Scott. “You watch the person you love being stripped away bit by bit before your eyes and there’s nothing you can do to stop it.” 

Hard to shrug off
Some of the earliest symptoms—the misplaced keys, the struggle with a word or a name, the anxiety over disrupted routines—look not unlike the frustrating but benign manifestations of a long life, well lived. “At first, particularly with someone of Barbara’s age, you just think, well, she’s getting on a bit—you would never say that, because it’s insulting, but that’s what you hope,” says Scott. “You don’t want to imagine that it’s anything worse.” Then, things begin to happen that become harder to shrug off. “I noticed that occasionally objects would end up in very odd places—for instance, I can remember a television remote control being in the fridge. That’s more than just getting a bit older.”

A time eventually comes when the harsh reality can be avoided no longer. “One day, Barbara went down to the dry cleaners, Johnson’s. She suddenly phoned me and said, ‘Scott you’re going to have to come and get me. I’ve had one of those moments. I didn’t know who I was or where I was.’ That was an early warning. Maybe at that stage I still thought it would be okay, but you can’t hide from the inevitable. It’ll come and it’ll wreak havoc with your life.”

In 2014, 18 months after Scott had first persuaded his reluctant wife to talk to a doctor about her misfiring memory, a diagnosis of Alzheimer’s disease was delivered. For a woman who most of the time was still entirely lucid and who has, as her legion of fans would attest, tended to tackle life with a spring in her step and a sparkle in her eyes, this was a horrific thing to digest. “From that day on, Barbara went to a place where she didn’t want to talk about it anymore. She just wanted to get on with her life.”

Most famous creation
And that’s what she did, as best she could. After her diagnosis, Barbara continued to work. She even returned to our TV screens to see off her most famous creation. “Obviously learning lines was becoming more and more difficult for her, but she went back to EastEnders and killed Peggy off,” says Scott. “I think subconsciously, although she wasn’t talking about it at the time, she knew what was happening within her, and I think she wanted to lay Peggy to rest on her own terms. The producer at the time was reluctant to kill off such an iconic character, but it was an important decision for Barbara, and they allowed her to do it.”

Very few people were aware of Barbara’s illness until last May, when Scott went public about her diagnosis—a major step for the pair of them. “In truth,” he says, “we did it because we couldn’t hide it any longer. When Barbara goes out, people gravitate towards her, they love to see her, and I needed them to know why she was acting the way she was.”

Now, as he attempts to raise £100,000 for Dementia Revolution, this naturally private, publicity-shy man is having to speak openly to the media about Barbara and the disease that’s destroying her. “The three years I spent at drama school have come in handy—putting on that front—but it’s not where I’m comfortable,” he says, but he knows that if his candour prompts donors to click on his fundraising link while also offering some small connection to other people who find themselves in the same distressing circumstances, his discomfort is a minor consideration.

Solace for Barbara
“The reason I speak so openly about her symptoms is that people are reluctant to,” he says. “The more it is talked about, the more acceptable it becomes to talk about it.” It also gives solace to Barbara. “Whenever I discuss it with her, in that moment she takes great comfort from the knowledge that she’s helping people. Barbara has always been big on helping people. It means she feels of some use—even though it’s a conversation I have to have with her over and over again.”

No amount of fundraising will make Barbara well, but that is absolutely not the point. “People keep seeing me, and Barbara’s name—but this is not about her,” says Scott. “We’re talking about something that affects our entire society. It’s too late for her anyway, we know that. But let’s think about future generations. I’ve got two great-nephews, Nico and Joey. I hope they never have to witness what I’m witnessing with someone I love.

If all of us can be a part of that, make a little contribution, then we’re doing a great thing.” His contribution will be to run a marathon just six months after his first attempt at jogging. Yours might be to sponsor him to do so.