FOR 27 years, “Scott and Barbara” went together like salt and pepper.
They were rarely apart, just “two munchkins in our munchkin house”.
But now Scott lives alone in their small mews cottage in the heart of West London. Dame Barbara’s tiny frame belied her larger-than-life presence and as you walk into the home, still adorned with her photos and showbiz memorabilia, the silence of her absence hits you.
“There are still times now when I wake up in the night and think, ‘Is Barbara OK?’ Then, suddenly, the reality hits me. . . she’s never coming back,” says Scott, 59.
“That’s the hardest thing at first. The realization you’re never going to see that person again. You are never going to talk to that person. Never see them smile. Never argue with them. . . it’s hard to take in.
“We are nearly two years down the line and, of course, I have taken that in. But I’ve had to learn to find myself again in so many different ways.
“When you’re with someone like Barbara, she was this incredible presence that everyone was drawn to. So that’s a big thing in your life.”
Indeed it is, and the chemistry and fun they shared is obvious in the book he has written using excerpts from the detailed diary he has kept since the 1980s.
But it is also an unvarnished tale of loss, grief and, in particular, how hard it is to see the person you love slowly disappear as dementia takes its hold.
Scott thought long and hard before deciding to write it, fearing that some might view it as exploitative to Barbara’s memory. But, as an ambassador for Alzheimer’s Research UK, he knew that giving a warts-and-all perspective on living with dementia might help others.
Besides, Barbara had always urged him to do it “when I’m gone”.
“We never talk about dying. We’re not prepared for what the end of life is like with a loved one,” says Scott, quietly.
“It’s not always someone dying peacefully in their sleep and the process of it can take days and weeks. It’s a very hard thing to go through, to be with someone.”
Although he had spent five days at Barbara’s bedside in the care home, he reveals, “I wasn’t with her at her last breath.”
He was asleep in a room upstairs because staff, worried for his traumatized mental state, had insisted he get some rest.
“The head palliative nurse had said to me, some people will not go while their loved ones are still in the room, they don’t want to put you through that, so they wont let go.”
And that is exactly what happened. She took a sharp downturn and by the time they had wakened him and he had run along the hallway, “I knew she had gone.”
He adds: “I took one look and her soul had left. That’s the only way I can say it. Barbara’s soul was no longer in the room.
“At first I found it very difficult that I’d said I would be there until the end and I wasn’t. But literally, I was with her an hour before.
“Also, I had to remember that at that time people were saying goodbye to their loved ones on iPads. Some were just getting a phone call to say your loved one has passed away, so I actually count myself lucky.”
In many ways, Barbara orchestrated her own death by stopping eating a couple of weeks after she arrived at the care home in July 2020.
“The disease makes you lose interest,” says Scott.
“But my own theory is that Barbara took control.
“A little part of them will always be in there and I truly believe that the strong, stubborn, survivor Barbara realized what was happening.
“She knew she wasn’t coming home, and she took a look around her and thought, ‘This is not for me’.” He likens it to the exit of her character Peggy Mitchell from EastEnders in 2016.
“Peggy said, ‘I don’t want people looking at me thinking I’m this thin old woman, this poor old woman, oh look how she’s ended up’. And I truly believe in my heart that Barbara stopped eating to take herself away.
“I said to the doctors that Barbara’s wishes must be observed, so they never force-fed her. They weren’t allowed to.
“She also stopped taking her meds. I just know it was Barbara signing off.”
After she died, he decamped to his mother’s house in Sussex where the state of national lockdown easily allowed him to hide away from the world and truly grieve for the love of his life. “I still had this terrible image of Alzheimer’s-Barbara stuck in my head; those images and sounds that she was in pain or reacting badly stayed with me.
“The hardest part about the grieving for me was how she went.
“No illnesses are nice but there’s something about dementia which is incredibly cruel for the person who goes through it and the family to have to stand and watch, knowing you’re powerless to stop it.”
He ended up staying in Sussex for three months and, during that time, started to read his old diaries.
“It was cathartic going back because it helped me discover the fun, vibrant Barbara that I met, fell in love with, and thought was the most incredible lady I’ve ever met and most likely will always be.” At this point, his voice breaks with emotion and he pauses for a few seconds to compose himself.
“I lost that Barbara in the illness, and towards the end of last summer I thought to myself, ‘You know what, I do want to put this down in a book and I want to do it now while it’s still raw.
“Then I can look forward. She would want me to look forward.”
After letting Companies House know that Barbara had passed away, their joint company moved into its sole name, a routine procedure that was reported by an online news site.
“I don’t look at comments but for some reason, one was above the line and someone had said, “I see the long game paid off.”
He laughs. “After 27 years and everything we went through together, it was shocking that someone could actually think like that. But it showed me that whatever you do, there’s always going to be someone critical.
“So I thought, ‘Just tell your story like Barbara said you should’.
“Anyone reading our dementia journey mustn’t be scared that it’s the absolute same journey they will have with a loved one, because they may not.
Funding is vital
“I could only talk about my experience. Our experience.”
The final chapter, written as a last-minute addition, details a meeting he had with then-Prime Minister Boris Johnson in August this year.
“I told him about Barbara’s dementia in more detail. I told him some of the unpleasant effects of dementia and how at times she wouldn’t recognize me, which he looked genuinely moved by.
“I also told him that for every four researchers for cancer, there is one for dementia and that has to change.
“And he told me the Government has set aside £95million for a dementia task force that, ‘with your permission’, we’d like to call the Dame Barbara Windsor Dementia Mission.
“I said she will be looking down with absolute pride and joy because there’s no bigger compliment or tribute you could give her.
“There are around one million people in the UK living with it and it’s getting worse. So I plead with our new Prime Minister, Liz Truss, to make sure the work that has been started is followed through, including the social care reform that will help millions of people.”
The recent breakthrough in the US — of a medication that could slow the disease down — is proof that research funding is vital.
And what now of Scott without his Barbara?
“I know she’s not coming back to me and I’ve learned to start getting on with my life a little bit, seeing friends and accepting dinner invitations which I never did for a long time.
“I can still be guilty of turning them down because I can’t face going somewhere by myself, but I’m getting there.
“That doesn’t mean I’m not open to a bit of very easy dating or occasionally having fun, but I also know I’m not ready for a serious relationship, because emotionally Barbara is not out of my system. No way.
“She always said, ‘When I go, be broken-hearted and cry your eyes out, then I want you to pick yourself up and have the best time of your life because that’s what I did’.
“And you know, I looked at her in those final days on that bed, when she was unconscious, and I kept saying to her, ‘I’m so pleased you led the life you did’.”
- By Your Side: My Life Loving Barbara Windsor by Scott Mitchell, published by Seven Dials on October 13, priced £20 in hardback. Also available in ebook and audio.