By Pippa Kelly
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.
What strikes me now, when I read my own words, is how raw it all was. I can hear the confusion in my writer’s voice, and the seemingly endless grief that comes when you love someone with dementia. But most of all I hear, and re-live, my guilt. As I wrote, I kept looking back and seeing mum’s increasingly erratic behaviour for what it was (a symptom of her illness) not what I’d thought it was (her strong and not always easy character becoming more extreme with old age).
It was a one-off piece and I returned to writing on other topics for national papers until, two years after mum died in 2012, I launched my website. I wasn’t sure what it should focus on and, to give myself scope, I set up three tabs – three hats for myself – of Writer, Campaigner, Mum.
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.
My newfound knowledge came too late for it to be of use to my mum, but freed from the emotions I’d experienced as she succumbed to dementia, I was able to combine it with my understanding of what others were going through to connect with them, gain their trust and tell their stories.
Since then I’ve met many people who have dementia and even more who love and care for someone who does. I always walk away from these encounters with a renewed sense of hope in humankind. The individuals share a common desire: to spread the word about what dementia is and to show that, though a diagnosis is a shock, it can also be a relief because you know what you are dealing with – an illness, which though incurable, can be managed for a while with practical coping mechanisms and support from friends, loved ones and the wider community.
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 blog.
I 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?”
The answer is no, quite the reverse. Don’t get me wrong. Dementia is cruel, its effects are ugly, and sometimes my interviews reduce me to tears. A few days after her husband died from Lewy Body dementia in 2015, 65-year-old Jan Inman rang to tell me her story. Her love for Ron was humbling. She told me that when she nursed him in the last three months of his life, she “fell in love with him all over again”. Though we’ve never met, Jan and I exchange news on Facebook and, strange as it sounds, we count each other as friends.
I have made countless friendships (real-life and online) through my dementia writing, nearly all with people affected in some way by this remorseless condition, several are Americans. I value them highly; we know the dark places in the depths of our souls that exposure to a loved one with dementia unearths. We understand the joy of living for the moment and hearing someone we thought we’d lost utter a word, or giggle or sing.
I often tell others in what I call my dementia community that they “do” – they roll up their sleeves, put together business plans, raise funds and make a difference. I merely observe and then write. It’s my lot in life, I suppose. If, by tapping out a few words I can join some dots, make one or two connections, reach out to lonely carers and frightened individuals living with dementia and help them feel less alone, I’ll have achieved more than I ever dreamed I would.
Pippa Kelly is an award-winning blogger and writer on elderly care and dementia based in London http://pippakelly.co.uk/. Her short stories and articles have appeared in numerous UK national newspapers and magazines including The Times, The Sunday Express, The Sunday Telegraph, The London Evening Standard, The Spectator, The Guardian, Mslexia. She also blogs for the Huffington Post and mariashriver.com and you can follow her on Twitter and Facebook.