Barbara Windsor's husband Scott Mitchell talks to The Sun's Jane Moore on life with the dementia-stricken star
It was a welcome flash of relief in what had been a nail-biting couple of days for husband Scott Mitchell after the actress collapsed at their London home in late July.
“She was in the bathroom and when I went to check on her, she was the most horrendous colour and trembling, holding on to the sink,” he says.
"I was about to sit her down, but she just collapsed in my arms with her eyes rolled back and her face slightly twisted. I thought she was having a stroke.”
Scott dialled 999 and within 15 minutes, the paramedics had arrived and Barbara had started to regain consciousness.
“It turns out she’d just fainted,” he smiles with relief. “But her heart rate was still as low as 30 and they couldn’t get it back up, so she was taken to hospital for tests and they decided she needed a pacemaker fitting.”
Barbara, 81, who was made a Dame in March 2016, had been suffering breathlessness and dizzy spells for some time, but more so since a recent change in medication for the Alzheimer’s disease she was diagnosed with four years ago.
In an exclusive interview with The Sun in May this year, Scott took the brave decision to finally reveal her illness as it was becoming increasingly difficult to keep it a secret.
Little did he know what an impact Barbara’s story would have.
“It’s been truly overwhelming. The public support has been mind-blowing. They’ve been so kind and compassionate,” he says.
When the news first came out, the Alzheimer’s Society revealed that visits to its website doubled and there was a 59 per cent increase in one-off, online donations.
“They called to thank us and said they’ve joined forces with Alzheimer’s Research UK for the Dementia Revolution, which will be the charity partner for the 2019 London Marathon.”
To that end, on April 28, Scott will spend his 56th birthday running (“or maybe a light jog”) 26 miles across London alongside a few currently unnamed stars of EastEnders who wish to support their former colleague and help raise much-needed funds for dementia research.
And Barbara has done a personal call-to-arms video message for the charity’s website, asking for help “to find a cure for people living with this disease . . . people like me.”
Although Barbara’s heart and lungs are strong, there has been an ongoing deterioration in her dementia symptoms since Scott first spoke out just five months ago.
“I’m watching Barbara living with it, and it can be very frightening,” he says quietly.
“She’s definitely more confused now. She often thinks our house is her childhood home in Stoke Newington, and is constantly asking me, ‘Is this where I lived with Mummy and Daddy?”
In the living room, there’s a noticeboard under the TV which shows several photographs of the couple together over the years with the gentle reminders “Scott and Barbara have been together for 25 years, married for 18” and “Scott loves you".
But recently, the moment came that he has long dreaded.
- Almost a million Brits are living with dementia
- 225,000 will develop it this year – one every three minutes
- One in six people over the age of 80 has dementia
- More than 40,000 Brits under 65 have the condition
“About two weeks ago, she’d had a bath and I was drying her back, when suddenly she looked at me with almost fearful apprehension.
“She said, ‘Who are you? What are you doing here?’ and I replied, ‘It’s me Bar, it’s Scott, your husband.’
“She snapped out of it almost instantly but then became very distressed and cried, ‘Oh Scott, it’s my memory, I’m so sorry.’
“I had always imagined it was going to happen, but . . .”
Scott pauses to compose himself. “I presume it might start to happen more, but as ever, I will take one day at a time.” That night, he held on to his feelings until he climbed into bed, then let go. “I sobbed and sobbed. Even though that moment hadn’t lasted long, it hurt. And it’s terrifying, for both of us.”
But there are laughs too. While Barbara was in hospital, Scott took the opportunity to have a stairlift fitted because of the dizzy spells.
“The first time she got in it, I became like a 1970s fairground attendant who said, ‘Single riders only please. Hold tight now and scream if you want to go faster.’
“She found it hysterically funny, so now I have to do it every time, top and bottom. If I don’t, she says, ‘Haven’t you forgotten something?’ which is quite bizarre because she forgets everything else. It’s so stupid but it brings us such joy and shields the sadness behind the situation.”
Most evenings are spent watching TV together. “We always watch EastEnders and I notice it stirs something up in her. She gets quite tearful a lot of the time.
“She knows it was a big part of her life and that she asked for her character Peggy Mitchell to be killed off.”
Scott says that one of the toughest challenges of living with someone with dementia is the constant repetition and reassurances you have to give.
“When you’re tired and maybe just trying to switch off while watching something, you might get asked the same question 15 times over,” he smiles ruefully.
“You have to try to keep a calmness in your voice, to show patience and compassion when you might want to scream.
“There have been odd times when I’ve snapped a little, or maybe widened my eyes as I’m trying to compose myself, and Barbara knows straight away. She won’t remember what I’ve said, but how I made her feel.
“And then I’m mortified with myself. I feel an incredible sense of guilt and shame, because I know she can’t help it. But I guess it’s only human to feel exhausted and irritable sometimes.”
At first, Scott tried to do everything himself, but was eventually persuaded that he had to look after his own mental and physical wellbeing, too.
So, for respite, he regularly calls in a carer so he can pop to the shops, gym or have a work meeting (he manages several EastEnders stars). “There are state carers and I believe they’re fantastic, but it’s so underfunded.
“I’m lucky that I have the means to pay for carers that Barbara knows. She keeps saying, ‘Why can’t I sit by myself?’ and I have to explain that if she got one of her blackouts, as she calls them, it would be very frightening for her to be alone.
“When I watch her in one of those moments, I can see the terror going through her mind and I want to reach in there and take it away, but I can’t.
“So I just hold her hand and say, ‘Everything is OK Barbara, you’re safe, you’re with me’ until she calms down. It’s a massive responsibility so even when I do leave the house, I carry in my head that it might happen and she might not recognise the carer and feel scared.”
Scott says that living with Barbara’s Alzheimer’s has opened his eyes more to the plight of others around him.
“I’m much more aware of people who may be standing for ages in one spot looking a little bit lost.
“Whereas before I might have been slightly irritated that they were in my way,” he says, picking at the salad that’s part of his bid to lose a few pounds before the marathon.
“We’re all in such a rush these days, aren’t we? I have always been compassionate, but now I’m more patient, too. This whole experience has forced me into a different way of thinking about life.”
What would he say to anyone else dealing with possible dementia in the family?
“When people have spoken to me about it — and many have, both friends and the public — I always say that however difficult that conversation is, you need to broach it and get it early, like I did.
“I firmly believe that Barbara had a couple of years of being able to continue working and functioning as her old self, simply because we got that early diagnosis.
“Start thinking ahead because, unfortunately, once you’re on this rollercoaster it’s inevitable that you eventually go through all the tough phases that you’ve heard other people talk about.
“As far as I know, the next ‘storm,’ as they call each deterioration, could be a couple of years’ time, a couple of days’ time or a couple of hours’ time. I just don’t know.”
So for now, he’s seeking solace in the continued laughter they still share and the occasional flashes of the showbiz trouper he married.
Shortly before the Carry On legend’s dash to hospital, they went to a matinee performance of the musical 42nd Street. “As we walked in, someone in the audience waved at Barbara and she waved back.
“Suddenly, around 100 hands all went up in the air and waved to her, and I realised that they all knew. It was such an amazing moment of love and compassion.
“At the interval, we walked up the aisle towards the bar, and she was talking to everyone, asking, ‘Are you enjoying yourself? Isn’t the tap-dancing wonderful?’
“The next thing I knew she had broken out into her own shimmying dance routine. So much for the dizziness!”
And for one joyful, carefree moment, Scott throws back his head and laughs.
- Scott and Barbara are calling on people to run the 2019 Virgin Money London Marathon for the Dementia Revolution to raise desperately needed funds for the UK Dementia Research Institute. To find out more, visit dementiarevolution.org.
Source: Read Full Article