This Christmas, George Rook will watch from his armchair as his beloved family pull crackers and open presents.
Once, he’d have been in the middle of the chaos, laughing and joking, this year, he’ll sit quietly, observing… remembering.
Because George, 67, has vascular dementia and Alzheimer’s disease.
He doesn’t know how many more Christmases he will have before he no longer recognises the face of his beloved wife Jane and his three grown-up children.
And whereas he’s always been the one cooking the turkey and arranging the family board games, now he takes a back seat.
“I hate being the Grinch of Christmas,” he says. “So I have to be proactive to escape scenarios that might make that happen.”
He is just one of about 850,000 people in Britain currently living with a form of dementia and, despite his struggles,
George is determined to remain positive and make the most of every day, including Christmas.
“I have to remember I’m one of the lucky ones to actually have a diagnosis” he adds. “Only 20% of dementia patients do.
I can manage my condition with medication and the frustration is much less, knowing what I’m dealing with.”
The former English teacher and school business manager had noticed he was struggling with certain things, before he was eventually diagnosed in 2014.
“Fifteen years ago, I had a double heart bypass. I had two arteries that were clogged around my heart and the implication was that, if they’re clogged, it’s likely that others will be, too,” he remembers.
“So my risk of vascular dementia, where the blood flow to the brain is restricted, was a real possibility.”
He was, in fact, living with dementia for years before the diagnosis.
He was finding it hard to remember people’s names at work and to find words “on the tip of his tongue”.
And he had increasing difficulty in organising his diary and started having to write everything down.
Eventually, five years ago, George went to his GP, who referred him to the memory service.
They diagnosed mild cognitive impairment at the time, but thought it was due to depression and work stress.
But George’s condition continued to deteriorate, particularly in his cognitive skills, and he became convinced he had dementia.
He was referred for a brain scan, which led to his diagnosis.
George, who had a central role in setting up Shropshire Dementia Action Alliance, says despite going through a “black period” for days afterwards, he now finds his dementia “more irritating than anything else”, particularly when it comes to social interactions.
And one of these is Christmas.
Before his diagnosis, George’s job was to cook the Christmas dinner. “I enjoyed cooking for my loved ones, but I simply can’t any more,” he says.
“The thing I really can’t handle is any noise around me in the kitchen, because I can’t cope with the distraction and become so agitated.”
Last year was the first time in 40 years that he didn’t cook the Christmas dinner.
Jane, 61, an NHS manager, agrees Christmas can feel like another bereavement. She says: “Christmas is really no different to any other time of the year, but it does seem more poignant.
“It’s worse for the children, seeing the father they know disappearing, changing. It’s hard for them to accept and understand.”
And George adds: “I just feel redundant at Christmas now… it’s a reminder that I’m gradually losing myself, that there’s a new reality caused by this fault in my brain.
“And because Christmas only comes once a year, it’s so easy to compare this year to last and register the decline.”
George, who has made friends with others who have dementia, admits he struggles with general chit-chat and finds some things challenging.
“Patterns on carpets and stairs are particularly difficult because my balance isn’t as good as it used to be,” he says. “If I can’t process what that pattern is, I can’t stay upright properly, so I’ll wobble and sometimes fall over.”
George says the changes in how his brain works create a prism through which he now views Christmas.
But when his children, William, 32, a junior doctor, nurse Harriet, 30, and Henry, 28, a surveyor, and their partners, descend on the house, in Ellesmere, Shrops, for Christmas Day, despite the difficulties he faces,
George is determined to enjoy it. “I look forward to Christmas every year,” says George.
“In fact, it’s more important than ever to have my family around me as much as possible, as I don’t know how long it’ll be before I don’t remember who is coming to celebrate Christmas…
“In fact, I wouldn’t have it any other way. Like many things since my diagnosis, it’s learning to accept and cope with the change in the way I communicate and behave.”
With all the cross-talking, shouting and general excitement at Christmas, George knows he has a tendency to withdraw and sit in the corner.
Not wanting to seem grumpy, George has decided to “move forwards”, and “teach family members how they can make small changes to help me make the most of every Christmas”.
“The commotion around opening presents for me is unbearable” he says. “It takes me a long time to take things in, so if I’m being handed a present – which invariably contains a surprise – while someone else is talking about their present and someone is trying to find batteries, I go into shutdown.
“So I explain to my family everything needs to be slow, understood and focused. And when I disappear for a walk, they’ll know I just need to clear my head, to get some focus and unwind. It’s all about no surprises, not too much noise and no distractions.
"Shouting over board games – which we used to do – is out, and the worst possible thing I could do is get drunk.
“But Christmas is still the most special time for me, with loved ones and laughter and lovely food.”
- One-in-four people dies from heart and circulatory diseases in the UK. Start with your heart this Christmas and donate to the British Heart Foundation at www.bhf.org.uk/christmas
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