Imagine if you had a favourite record, a favourite song, that always perked you up when it came on the car radio, because you hadn’t heard it in a while. I can think of loads. From the top of my head, ‘Baker Street’ by Gerry Rafferty, it always makes me smile, gets me reaching for the volume button and quickly gets me singing. I’m sure you have your own favourites too.
Baker Street – I can hear that saxophone now!
Now imagine that song comes on the radio, plays all the way through to the end, but instead of it being replaced by a new tune playing, your favourite one plays again straight after, then again, again, and again. Then again. And again. I’m sure it wouldn’t be long before that song wouldn’t be your favourite any longer. But that’s because we are able to rationalise and recognise that the song is being continuously repeated. It is this rationalisation, this recognition, that would ultimately turn us away from our favourite song, because we would become, eventually, sick to death of it.
However, what if we weren’t able to recocognise it or put it into context, by say, not being able to remember it from when it started just four minutes before? We would still love it and be surprised and thrillled to hear it again. And again. And again.
Welcome to the world of dementia. Or should I say the world of dementia for some people, because the manifestation of dementia is wildly different for some people. I found that out this week.
I’m lucky. I’ve never experienced the fall out of living with dementia through a close family member or friend. Of course, I’m aware of the disease and understand the overall effects and impact of it, in fact, a dear friend of mine struggled as he watched his own mother deteriorate – over a number of years – from this wretched condition, and his sorrow as he recounted his experiences left a mark on me, but I’d still never really seen it close at hand. Until this week.
As readers of this blog will know, last year, September in fact, I walked away from a great job and career to pursue my dream of becoming a full time writer. My fifth book, but first novel – ‘Champion of Champions’ – was on the publishing horizon, and I was faced with a now or never moment. I chose now.
Champion of Champions – now or never!
‘Now’ has been amazing. I had no idea where my risky decision would take me – I didn’t know I’d be committing to writing this weekly blog for example – but almost every week a new opportunity or a new experience has found its way to my door. After years of saying “no” or “I’ll have a think about it” when new opportunities came my way, I now, generally, only utter one word – “Yes”.
These opportunities so far have seen me speaking to an audience of over 300 at a school in Cardiff, appearing on local radio and TV promoting reading for pleasure, addressing education professionals at their regional forums, having poetry published in the national press and delivering countless creative writing workshops in schools to children of all ages. It’s been a blast, and long may these great opportunities continue. But this week, one of these opportunities really stopped me in my tracks and made me think. It was both an inspirational occasion and one of life’s wake up call moments, you see, I responded positively to a request to visit a Care Home and talk to two old gentlemen about my journey in writing my books and also about my love of sport. I should mention, the gentlemen concerned had dementia.
It has long been supposed that the topic of sport, with its unending list of memories, accomplishments and achievements, is the perfect subject matter to reach people with dementia, especially those who are locked in the past where pictures and images, are believed by them, to be images of today. All that is required really is to have an understanding of sport, a knowledge of its history and the ability to source media from the past. Fortunately, as a life long sports geek and statto, I possess all three of those attributes, so talking about sport of the 50’s, 60’s and 70’s is the perfect busman’s holiday for me, it’s a passion of mine and I’m never happier than when I’m doing it.
In my mind, I thought I knew what would greet me when I visitied the Care Home and I was prepared for witnessing some upsetting scenes, but I didn’t really. The home was spotless, clean, organised and had a lovely, happy, welcoming buzz about the place. The staff were first class, welcoming, professional, accommodating, oh, and massively importantly, brimming with humour. That would be needed as I was to see.
I was quickly introduced to the two gentlemen I was to chat with, and they were a delight. We clicked straight away, and I absolutely relished the opportunity of talking to two genuine old school gentlemen; smart, bright, clearly intelligent, with wonderful traditional manners that reminded me so much of my own two dear grandfathers, who themselves were the most proper and upright gentlemen you could wish to meet. I began by chatting about my books with them and it was a delight when they both asked if they could hold them, and to see them flicking through the pages and asking lovely questions about them, it was wonderful. Initially, I found myself wondering “why are these men in here?” They seemed so fit, well, healthy and chatty, I was slightly confused. Of course, one of them was in his 90’s and slightly frail, but apart from that both men seemed perfectly lucid. However, slowly, their horrible condition began to reveal itself.
That favourite record began to play again, and again. And again.
It knocked me off my stride when it happened at first, because I’d foolishly allowed myself to almost believe that these wonderful gentlemen were fine, 100% healthy, just suffering from – as we called it when I was growing up – old age. But alas, that was not the case. I won’t go into the specific manifestations of dementia that these gentlemen displayed, that is too personal, suffice to say, forgetfulness is at the heart of it.
When I first noticed it, I almost went into my classroom default mode that I use when I work with young people, one of instruction, encouragement and ultimate development – always looking to help people improve. But you can’t really improve dementia. I think one of the carers noticed this as I showed one of the gentleman – for the second time – a wonderful picture of the great Swansea, Wales and British Lions rugby player, Mervyn Davies in action, and even though we had looked at it less than ten minutes before, it was if he was seeing it for the first time. The carer joked lovingly with the gentlemen about this second recollection of Mervyn, then repeated what the gentleman had already said about Mervyn minutes before and laughed when the gentleman looked up at the carer and said he was impressed that he knew so much about him! It was a lovely, humourous but tender moment that my writing here probably doesn’t do justice to.
Mervyn Davies – brilliant player, brilliant topic for conversation.
But it was then that the penny dropped for me, my visit wasn’t about looking to improve people’s condition or somehow miraculously make them better, it was simply to grab their interest and engage them in the moment, however fleeting that moment was. In terms of one of the gentlemen, I knew that if I could have a conversation, and I mean quite a detailed, interesting conversation about Mervyn Davies for maybe just five minutes, which sparked the interest of this man and unlocked some long lost memory of this great rugby player, even if we ended up having that conversation five times over, that was success. The reason? Well that means that the gentleman would have experienced five moments where he talked in wonder about Mervyn Davies with a real relish and joy. To me it was five times, to him it was once. That was when I understood the real point of my visit.
The experience was a wake up call for me too. Social media is full, these days, of wise words and sayings of the past, quotes from Churchill, to Ghandi, to Einstein, even Anthony Hopkins, all designed to make us question our – often – humdrum and functional lives. One of the ones doing the rounds at the moment is “Wake up and live the life you want to live, none of us are getting out of here alive.” I paraphrase, but the sentiment is correct, the one thing that binds us all is our mortality. The lights are going to go out one day, for all of us, that is our only certainty.
Ironic that Hannibal Lecter is coaching us about having fun
What I experienced this week however, was not just the black and white of life and death, it was instead the greyness of the light sadly dimming for some wonderful people, before it goes away totally, and that is very difficult for anyone involved to deal with. Unlike our inescapable passing, most of us will actually escape dementia, but the reality is that we won’t know if that is us until the time comes, and the awful irony of this horrible disease is, that we won’t know we’re suffering from it anyway.
When I made my choice, last year, of walking away from my career to follow my dreams, it was a huge risk. But what exactly were the risks? Well, taken together, they all boiled down to one that probably drives all of our decisions – finances. Fortunately, things have gone really well with my book and my school visits, so that’s not a problem at the moment. It may well be in the future, but it’s not now. But even if it does become a problem, so what? Those lovely gentlemen I met this week had been professional men who were proud to tell me of the parts of their working lives they could recall. For all I know, they were once very wealthy and successful men, that wouldn’t surprise me at all, but now, in their current existence, that all counts for nothing. Zero. And that realisation is why I know I made the right decision to follow my dreams, regardless of any perceived success or failure by others of that decision, because the visit to the Care Home confirmed what I already knew. Life is transient and relatively short, as a result, it is incumbent on us all to live our lives well and follow the path we want to follow, not go down one often chosen by others, simply to earn a buck.
Mistakes I had made back in school, had ultimately put me on a path to a 32 year career of jobs I was never truly passionate about. Yes, I did them to the best of my ability, and yes I feel I gave good value to my employers for my services, but overall, they were never roles that made me happy deep down inside. With my writing, school visits and range of other activities that are opening up for me, I now have that happiness and I am so grateful for that. Grateful that I get to write whenever I want, grateful that my book has been, fortunately, well received, grateful for being able to visit schools and have the privilege of being able to help and instruct young people to reach their potential. But above all I think, I am grateful for two things that happened this week; one, that the tragic circumstances of two lovely gentlemen helped me remember the importance of making the most out of life and, two, that for five minutes, I was able to reconnect a dear man with his youth and see that wonder of recognition of a happy memory in his eyes. So what if it had to be repeated again and again.
The song remains the same? Well, if it’s a great song, who cares?
(If the content of this post has had an impact on you and you would like advice in dealing dementia or would like to make a donation to help in the research and treatment of dementia, then click here to visit the website of the Alzheimer’s Society.)