‘It’s like a fire in Ken’s brain and it gets bigger and bigger’
Linda Barnes started her Dementia Diaries blog after husband Ken was diagnosed with early-onset Alzheimer’s. John Blow finds out about their journey.
AFTER DECADES as a nurse Linda Barnes knew all about caring for people, but could never have imagined just how much her expertise would be needed at home.
Her husband Ken was diagnosed with early-onset Alzheimer’s aged 53 in 2016 and she has since retired to look after him full-time.
In 2019 she set up Telling tales, a blog detailing the trials and tribulations, sometimes funny but often stark, of a couple living through the daily realities of a complex and often misunderstood disease.
The Knaresborough woman hopes to raise awareness about some of the less acknowledged aspects of the condition, which can affect each person differently, meaning that it is difficult to recognise unless someone has had first-hand experiences.
Linda, 60, says: “As the dementia progresses in the brain, it affects different parts. So it might start off, like with Ken, affecting the numeracy area, or it might start with memory, or thinking processes – sequencing and that type of thing.
“It’s like a fire burning, if you like, and it gets bigger and bigger and eventually the whole brain will be encompassed and so that’s why you lose different skills. And everybody’s dementia is different because it depends which way the disease spreads. So you won’t get two people the same. That’s why it’s so difficult for people to understand it.”
The couple met aged 16 at the Hotel Cottages in Boroughbridge and married at 21.
On their third wedding anniversary their first child, Vanessa, was born, followed by brother James.
After her nurse training at St James’s in Leeds, Linda was a junior sister at the former Harrogate General, but left to have their children then became a staff nurse at Harrogate District Hospital, a school nurse at King James’s and a community school nurse before her final role on the staff of a GP surgery.
Ken was special constable, volunteering around the district, and had his own building
business, KJ and LM Barnes Ltd. The couple built their own home, and renovated some as well, with Linda taking care of the designs.
“We’ve had a really good life together,” says Linda.
“We had worked so that we
were prepared for a sunny retirement, really.”
However Linda began to notice a change in Ken, who was having trouble with numeracy.
“Ken has had depression since he was about 40 and had been on
anti-depressants and whatnot, so I knew what depression was, but I thought something else is going on here, there’s something not quite right. I did send him to see the GP and he did the standard memory tests and all of that, and he scored very highly so they pretty much said, you’re fine, off you go, it’s stress and anxiety and because of his previous history, I suppose that masked things.
“But when he forgot to tell the time, I thought this is a bit weird. And he bought himself a new watch because he couldn’t read the dial on his other watch. And he still couldn’t tell the time. Then I realised he was struggling with numbers. He didn’t recognise numbers in the same way that you and I would, they were like a foreign language.”
This had an impact on daily tasks such as changing the TV channel.
A positron emission tomography (PET) scan revealed what was happening to Ken.
“When we got the results, in a strange kind of way, Ken was quite relieved because he knew that something very wrong was going on, but nobody really believed that there was anything the matter with him,” says Linda.
“Whenever anybody mentions dementia, you think of old people that lose their keys and all of that kind of thing and he didn’t present like that at all.”
After his diagnosis, Ken wanted to continue working so became a Harrogate hospital porter for about six months.
“They called him the smiley porter and he was particularly good with very anxious patients and people with dementia,” says Linda.
The couple, who have two grandchildren, found that most of the support on offer was for older people, but Ken has enjoyed groups such as Golf in Society at Rudding Park and Over the Rainbow in Knaresborough, which allows the Leeds United fan to meet with others who also have an interest in sport.
What people can do, though, is exercise patience when someone’s needs could be complex. For example, an optician who didn’t understand young dementia recently became frustrated and short with Ken, who did not understand what he was expected to do. They have since used the Specsavers Home Visits service instead.
Linda says: “It’s very difficult when people don’t understand the condition. You get a lot of sympathy from people if you’ve got cancer because people understand about cancer, but Ken looks really fit and really well. People outside us don’t appreciate the torment that he goes through on a day to day basis – when you can’t get dressed yourself, when you can’t get washed yourself, when you get lost in your own house. It is hard for two people to understand that’s what dementia does.
“It robs you of your future. And there is no hope. All the doctors will say is that it’s incurable and you have to live in the present time.”
Moments of levity do come, though, in the form of their Schnauzer dog, Hettie, “who features very largely in our lives” and their grandchildren, “my two little stars”.
She believes that the blog and fundraising efforts, though, have made a difference.
“I think everyone used to be very afraid of cancer, but as there’s more treatments and more support, it’s more widely talked about – the Big C, and now it’s the turn of the Big D, I think, and certainly people do know more about it, and I think it’s getting less taboo,”
She adds: “We’ve definitely done our bit to try and make people more aware of youngonset dementia.
“I do think people do know more about it than six years ago, I’m positive they do.
“Which can only be a good thing. And then one day there’ll be a cure and that will save future generations.”
It robs you of your future. And there is no hope. Linda Barnes describes dementia.