Upside of living with dementia
A fly-on-the-wall TV documentary sees a family finding a surprising silver lining to living with the disease. India Sturgis reports
Three words will be forever etched in Jayne Roberts’s memory: apple, table, penny. She recalls them now in quick succession and with absolute certainty.
They were the words her GP asked her husband, Chris, to remember, repeat several times and then, after a minute or two of other health-related questions, return to. He couldn’t summon up a single one.
“Every alarm bell in my body was jangling,” says the 51-year-old mother-of-five, who had accompanied Chris to the appointment. “I remembered them. He should have remembered them. I knew at that point where the doctor was heading. Before then, dementia hadn’t crossed my mind. Why on earth would it? He was 50.”
In the months that followed, Chris, now 55, a former property manager and motorbike enthusiast, was eventually diagnosed with vascular dementia and early onset Alzheimer’s.
While there are some 850,000 people living with some form of dementia in the UK, just 5 per cent of sufferers are under 65, which makes Chris’s story – the subject of a Panorama special tonight – all the more moving. Filmed over almost two years, via video diaries and CCTV cameras rigged throughout the family home in North Wales, the documentary is a brave attempt to go behind closed doors to show the reality of living with dementia.
The family had understandable reservations about being filmed, but their main motivation – driven by Chris, who became an ambassador for the Alzheimer’s Society shortly after his diagnosis and still gives talks in front of hundreds of people – has been to realign perceptions of the disease. “We didn’t want to show the usual doom and gloom and horror of dementia,” says Jayne. “We are under no illusion as to what the late stages are, but it takes a while to get there.”
In hindsight, she says, the signs had been there for a while before his diagnosis. She had taken to calling her husband Victor Meldrew, thanks to his sudden mood swings, aggression being a typical symptom of the disease. He would uncharacteristically and unnecessarily pick on one of their children – Rachelle, now 31, Kristian, 27, Jacob, 26, Sadie, 19, and Kate, 18.
There was the time when he paid $300 for plastic sunglasses from a beachside shack during a holiday in the Dominican Republic, or gave a friend a heap of lead from their new extension that they could have resold, the constant repetition of questions and the unusual routes he took home when driving.
“He would always make valid excuses,” explains Jayne. “I assumed he was being scatty or jet-lagged or having something like a midlife crisis.”
Once the penny dropped, it fell hard. “I went through a whole range of emotions,” she says, “the most surprising being shame. I couldn’t get my head around why I felt ashamed, because I knew it was a disease.”
But all she knew was what a debilitating disease it was; her mind filled with visions of her husband diminished, incontinent and utterly reliant upon her – all dignity flown out of the window.
“Chris accepted it a lot more quickly than I did. I was embarrassed. I just had the stereotypical view of the late stages of dementia in my mind. He was diagnosed with vascular dementia but I was calling it vascular degeneration. I couldn’t even bring myself to say the word.
“Chris has always been the one who makes things better in our house, but with this disease you can’t do that. It isn’t going to get better. You go into shock. I thought he’d be dead within two years.”
Doctors have been unable to offer Chris an explanation for his condition, although there is a chance it is hereditary. His mother died of a heart attack at 50 – not before the family recognised symptoms in her, but too soon for them to know for sure.
They have yet to test the children to determine whether there is a chance they have inherited the condition (early onset Alzheimer’s can cluster in families) – “it opens up a whole can of worms. We are not going down that route yet,” says Jayne – but are planning to store samples of Chris’s blood so they can find out in the future if necessary.
Five years on and Chris is on two types of medication – memantine and reminyl – to control his symptoms and remains in the moderate, rather than advanced, stages of the disease.
Which is not to say it isn’t distressing: the documentary shows him failing to recognise his family, stammering, becoming easily confused and requiring prompting to eat, drink or sometimes even just to get out of bed at the home he and Jayne share with their youngest daughter, Kate, a nursery nurse, who has forgone university to help look after her father.
But for all the heartbreaking scenes where Chris breaks down screaming in frustration, or gets lost in his own home, the cameras also capture moments of joy and hilarity as Jayne and Kate find he has, yet again, stuffed his coat in a kitchen cupboard. Or when one of them reads out Ikea flatpack instructions, suggesting he “call Head Office if confused”.
The family go on a camping trips and devise new ways of coping with everyday conundrums: showing him options (food, drinks, DVDs), rather than asking him which he would prefer, so he doesn’t just choose the latter to avoid embarrassment at having forgotten the first.
They cover the front and back doors with curtains at night so he is less tempted to disappear outside during his many midnight wanderings. In short, they come together in an overwhelming effort to keep Chris at home. “I don’t want him to go into residential respite care because I don’t want him to forget me,” says Jayne, simply.
Campaigning for better dementia awareness has not just made the Roberts family feel like a team again – but led Jayne to see her husband in a new light. The pair met when they were 16 and Chris was dating a friend; but it wasn’t until 10 years later, at a birthday party, following the breakdown of other relationships on both sides, that romance blossomed. They married in 1994, after Jayne proposed.
“We are two sides of the same coin,” she says. “We come as a pair. Our whole married life has been fun. That has always been the way.”
By far the hardest part of her husband’s dementia has been his slow withdrawal of affection as the disease sinks in. “He became very closed. He would sleep with his back to me. Kissing a cheek that is not even offered to you, that is difficult. I stopped trying. Since his medication has changed, that has improved. He puts his arm around me or holds my hand.”
Her priority now is making the most of what time they have left. “We live for today. He has always been the man I loved, but it has only been since the diagnosis of dementia that I’ve seen what he is capable of.”
‘We didn’t want to show the usual doom and gloom and horror of dementia’
Living With Dementia: Chris’s Story is on BBC One tonight at 8pm