The first article I ever wrote about my mum’s dementia appeared in 2006 in a national newspaper here in the UK. It recounts the terrible decision my siblings and I took to sell our parents’ house and put mum in a nursing home when her condition – and subsequent refusal to move – threatened not only her health but that of our dad, who had become very frail.
I used Twitter to spread the word about my blogs and within months it became clear that the ones that attracted the most comments and attention from my growing readership were those on dementia and its social, emotional and psychological impact. Much to my surprise I was fast becoming known as a specialist dementia blogger (I even won a major award). I discovered that the more I researched and wrote about the condition, the more I began to appreciate the complexity of its effects, not just on those who have it and their immediate family and friends, but on wider society.
As I write, a primetime TV programme featuring a couple I have met is being aired on the BBC. Over the course of almost two years, Chris Roberts and his wife Jayne allowed CCTV cameras into their house in North Wales and used video diaries to record their daily lives coping with Chris’s Alzheimer’s. He was diagnosed five years ago, aged just 50.
The Panorama documentary is searingly honest and, at times, painful to watch as Chris’s condition worsens and Jayne struggles to come to terms with the fact that she is losing him. She knows they both need some respite but says she can’t risk Chris going into a care home for a week “and me not wanting him back”. Her candour is breath-taking. I know, from experience, how much it will help others in the same situation – as they hear what she has to say, witness her sadness, see Chris’s frustration – to know that they are not alone.
Connecting people, sharing stories, gathering information is what I’m about. I’m a journalist, after all. But to do so on a topic this close to my heart, has changed my life. That sounds melodramatic, especially coming from a buttoned-up Brit, but it’s true. Though unpaid, my dementia blogging is by far the most rewarding job of my 33 years as a professional writer, and I’m delighted to contribute to the #AlzAuthors blogI spend hours talking to people who have set up enterprises, charities and clubs (such as the wonderful Healthy Living Club in south London) to enhance the lives of those with dementia. “Doesn’t it depress you,” friends sometimes ask, “writing constantly about such an awful thing?”