Carers have been much in my mind at the start of 2016. I keep bumping into them, either virtually online or in the flesh, and they’ve got me thinking about my new year’s resolution.
For some time now I’ve been working on a newspaper piece about early (or young) onset dementia – when the person affected is under 65. The stoicism shown by all the families I’ve met has been extraordinary. Day in, day out, for every minute of every day – and often restless night – the dementia is there, like an unwelcome guest who will never, ever leave.
Yet the people I interviewed for my article rarely complained – though there was almost always a sadness about the spousal carer. One wife told me she called her husband’s Alzheimer’s the “Cheshire cat disease” because she was watching him “fade and fade and fade”. She described it as a “double bereavement”. I – like thousands of others in this country – know a little of what she means.
There were flashes of anger amongst those I talked to, but this was more against a health and care system that doesn’t seem to recognise the needs of those living with dementia (be they the carer or the person diagnosed) than anything else.
Someone I’ve known far longer than the young onset group is Suzy Webster. Suzy was one of the first people I met when I began blogging; she was speaking at a conference in London and told us how her mum (who has dementia) and dad had moved in with her and her husband and two young daughters in Chepstow so that they could have the “dementia adventure” together. It was a lovely, positive phrase for what must, in all honesty, be a challenging life.
I’ve got to know Suzy a little over the past two years and I enjoy following her on Twitter and reading her occasional blogs. Just before Christmas she and her family appeared in a film about their life. Entitled “I’ll Always Be My Mother’s Daughter”, it’s just two minutes long, upbeat and laced with jaunty, old-fashioned music.
As the two women sit side by side on a small sofa you can see the bond between them, the familial likeness in their faces, their eyes – not to mention their eyebrows – and their mischievous smiles.
Short and sweet as it is, the film packs some serious messages. Suzy says her mum’s dementia has been “life-changing” for all of them, that they take a team approach, with her girls learning to care for someone at an early age – “which is great” – while she is learning to slow down, to put her career on hold.
“What’s important is being here, being together, enabling mum to be with us here,” she says. After a moment’s pause, with impeccable timing, her mum adds, “Forever”. Julian Fellowes couldn’t have scripted or directed it better. Do watch the film; it’s guaranteed to make you smile.
Equally moving, but in a very different way, is Iain and Roy’s story, told on Tumblr by journalist and photographer James Hopkirk. The two men – 71-year-old Iain and 81-year-old Roy – live in a block of flats in Pimlico and until Roy’s sister Hazel died a couple of years ago they’d been on little more than nodding terms.
After Hazel’s death, Iain realised that Roy’s confusion and depression were due to more than grief. He managed to get his neighbour to a doctor where he was diagnosed with dementia. Now Iain looks out for Roy. “Where Iain leads, Roy follows,” writes Hopkirk. “Roy is increasingly anxious, worrying about little things like his keys, glasses and medication. But with Iain around, he visibly relaxes – he trusts him so completely that even when he doesn’t always know what’s happening, if Iain’s there he knows it’ll be ok”.
In very few words and a series of quite brilliant photos, Hopkirk has caught the lives and told the story of these two men – of the self-confessed anarchist keeping an eye out for his older neighbour. They have little in common, save a “deeply engrained aversion to the Conservative party” and “an appreciation of classic British tailoring”. There’s tragedy and black humour, wit and mercifully unsweetened compassion.
“Initially, Iain says he was driven by a sense of responsibility, of duty – he couldn’t stand by and watch a man suffer. But over time they’ve become very fond of each other. Roy is his pal, he says, not his patient”. Hopkirk’s words describe what it is to be dementia friendly, what it is to be kind, what it is to be human.
Two years on from my very first blog, I know much more about dementia. I know that there are over 100 different types of it (the most common by far being Alzheimer’s disease). I know that 45,000 individuals in the UK aged under 65 are living with some form of the condition. I know – thanks to meeting people such as Agnes Houston, Ken Howard, Helga Rohra and Chris Roberts – that it’s quite possible to live a good life with dementia. I understand, as I once never did, the sensitivities surrounding the language of dementia and how this contributes to the stigma that clings to it. I appreciate the lack of awareness and depth of ignorance of this widespread, pernicious affliction, for which there is still no cure.
But after 24 months of writing almost constantly about the subject, the most important lesson I’ve learnt – what the editors of mariashriver.com (the huge American website for which I now write) would call my biggest “takeaway” – is that those of us lucky enough not to have dementia can make the lives of those who do, far, far better than they currently are. Simply by being a little more thoughtful, a little more considerate, a little more friendly. In other words, kinder to our fellow men and women. As a new year’s resolution, it’s hard to beat – and surely pretty easy to keep.