The Curse of Demon Sha’r
I am not religious. I do not have anything against religion but, though I joke about most things in life (including religion), I wouldn’t want to offend someone who believed in a deity, an afterlife or the concept that we were deliberately made in the image of God, as accurately depicted by Terry Gilliam in Monty Python’s documentary The Holy Grail. I do however appreciate what a miracle our existence is…the almost unfathomable number of obstacles that evolution had to overcome in order to produce such complex beings as humans. These hurdles ranged from planets having needed to have formed and then be in the right place at the right time, the right mix of sand, cement and sticky-backed-plastic being available, Earth being within a suitably safe “Goldilocks” distance from the Sun. The survival of diseases, wars, natural disasters, other such life destroying events and the ability for Amazon to be able to deliver all this by Thursday. Yet, despite all of these challenges, life eventually found a way. It evolved simple snot-bubbles into a tool making, creative, articulate species of intelligent creatures able to adapt well to their environments and to advance itself with such fangled new ideas as medicine, science and the Soda Stream. And the greatest attribute of this advanced creature? The brain…the human…mind. It is so complex, so incomprehensively impressive in its ability to learn new concepts, to adapt to new environments and situations that it has always, as long as I’ve been able to understand it, staggered me as being one of the most miraculous things in our known universe. But…
As with all things in this world that are so complex, however well engineered they might be, they sometimes go wrong. I think people can easily forget this as they don’t actually see it’s moving parts, can’t see any joints begin to ware, aren’t able to feel it ache as its’ straightened up out of bed in the morning or experience the pain inflicted on it as it is stubbed whilst being used to walk to the bathroom in the dark for a covert wee.
Mental health is still a subject that is often shied away from in polite society, lest perhaps those that are involved in such a discussion might actually catch it…whatever ‘it’ is. And we have created such a stressful world for ourselves with pressures coming from all directions from peers and badly appointed managers and corruptly risen politicians to the media and even, all too often, from our own parents. We have produced so many abstract drugs and shiny new drinks with which to fill our bellies, so many toxic fumes and food-hidden chemicals with which to saturate our lungs and brains with that…is it really so surprising that our brains sometimes don’t work as well as we might like them to?
And, as if all those, and many other, dangers weren’t enough, we’re now living longer, meaning that we’ve learned to patch up these rusty old bodies and minds of ours in order to squeeze a few more trundling miles out of them. And so it was at this stage in his life, his early 80’s , that my Father found his mind beginning to show signs of such ware and tare.
He had moved away to France to resettle when he was 69 and had enjoyed a meagre but enjoyable retirement there. He was initially alone but soon discovered some of the local people and had forged some truly great friendships. He even met a woman called Yvette whose friendship he enjoyed for some year. Yvette had had an interesting and tiring life and eventually my Dad helped nurse her until she sadly passed away.
My Dad had survived one of the Word Wars and had raised six children on his own after my Mother moved away when I was about 8 years old. He was a good man, funny and very smart. He was strong, had always eaten sensibly and lived well. But it was only when my twin brother contacted me to tell me he’d heard from Julie, my sister in Australia, that he was unwell that we had any idea at all that he had been suffering from dementia.
Freddie, Yvette’s Son, had emailed Julie thinking we had abandoned Jim, my Dad, and didn’t understand why we hadn’t visited him to get him some support.* We, my Brothers Jim, Graham and I bought tickets the same day and travelled to France to see him immediately. We had gone all together because we had been told that some local youths had moved into my Dad’s house and had effectively taken over his home. As we discovered, about 12 hours of arrangements and travelling later, this was not the case. Dad opened the door to his home in le Chatre to us, quite bemused and totally un-phased (or ca ne fait rien as he would say) by our sudden and unannounced arrival. Jim and I immediately completed a tactical sweep of both floors (a valuable skill gained from many hours of playing Call of Duty, ahem…) and confirmed that there were no signs of anyone living there other than our Dad. We were slightly confused but also instantly aware that something wasn’t quite right with him. I immediately launched into action by sitting in front of the fire, mulling over the days’ events and drinking half a bottle of Talisker Whisky. This may sound very irresponsible and ill advised but, at the time, I needed something to take the edge off from the stress of the moment. Now, ordinarily, this would have made me a ‘liddle dipsy’…but having been fuelled by adrenaline for the previous 12 hours, the Talisker did not touch the sides (and oddly just seemed to sober me up…go figure!). We spoke to Dad to gain a feel for how he’d been and how everything was and, though he didn’t seem a hundred percent, decided that we had very likely been led on a well meaning but birdless poursuite de l’oie. You see what I did there?
The only thing that had given us any cause for concern was that he had stated that he thought some children had tried to gain access to his home via the loft hatch, (His house was linked to a grange so this was physically plausible). That night I thought I heard Dad talking to someone. It woke me, so I sat up and listened and heard him speaking softly but, since he did not sound in any way threatened or anxious, I mentally logged it and rolled back over awaiting the morning. The following day we spoke to him to ask about who he’d been speaking to. He stated that he’d been speaking to the boy at the end of his bed. We confirmed that this was definitely what he thought had happened to which he confirmed, “Yes, there was a boy here and I was chatting to him.” He stated that “he must have gotten in through the hatch!” We inspected the hatch and noted that it had previously been secured shut with screws so this would not now be possible. Alarm bells rang with all three of us as it dawned on us that Freddie had been absolutely right to be concerned. After consideration we decided that our Dad would likely be best treated if we took him home with us. We discussed with him the option of coming back to the UK to live with us and he agreed immediately. Now it should be mentioned at this point that we had brought this subject up in the past and that he had always immediately and completely dismissed the idea and would not entertain it in any way…but this time he simply knew…he knew that it was for the best. This was actually slightly upsetting because it seemed to suggest that, as strong as he once was, he now knew he needed us.
We visited Freddies’ to tell him what we had done, what we were planning for Dad and to allow Dad to say his goodbyes. I’ve never seen a man more grateful in my life and genuinely relieved at having realised we hadn’t abandoned him and that we just hadn’t known that there was something wrong with his friend, our Dad. He was also amazed that, having emailed my Sister in Oz, we had arrived within 24 hours. All this he managed to do through his tears and despite his poor English and our even poorer French. I will always be grateful to Freddie and his family for having been a part of my Dad’s life.
The following months saw Dad visiting me in Essex, spending some time with my Sisters’ family in Oz and then eventually staying at my other Sisters’ in Rugby. During this time his mental health and capacity declined and, something I had not been aware of before all this was that, every time he suffered a water infection, a bout of flu or similar, part of his mental awareness would be permanently stripped from him.
Being a budding writer, even back then, I gave this disease of his a form…and a name. Its form was that of a vulture that circled patiently above him, sneering and waiting for the moment when the nurse would turn her back for a moment so that it could greedily sweep in and steal yet another piece of him. This vulturous scavenger was named the Demon Sha’r (Which I obviously based on the dementia that Dad had). Its creation didn’t really bring me much in the way of solace or closure (which, with its’ hideous form and malicious agenda is none too surprising really) but it did keep my mind occupied on those many long journeys and…trust me, when you’re watching the man who raised you…the man who taught you right from wrong, of the importance of helping others when we can, who inspired in me a love of classical music, France and both Laurel and Hardy…literally rusting away in front of you, corroded by the very engine that drove him, his mind, you will seek solace in any thoughts that are within safe reach.
The Demon Sha’r continued its attacks on my Dad until, towards the end, I no longer recognised him. His battle scars had aged him overnight. This tower of physical and emotional strength now looked upon me with wonder, and sadly the wonder was, “who are you?” It is one thing to stand beside a grave in the rain and to mourn a lost loved one, it is another thing entirely to mourn them when they are sitting in the same room smiling vacantly at you.
This experience gave me a better understanding and appreciation of mental health and mental illness. I would not wish dementia, Alzheimer’s or any similar illnesses on anybody or their families because, after all, this is one of those diseases that does not simply affect the individual. It has a tangible and devastating blast range and those people who are diagnosed with it are merely at its epicentre. If you know somebody who is having to live with the effects of a mental illness, be they the person suffering it or those around them, be patient with them. Give them a little bit of space and be a tad more understanding with them than you might ordinarily be. And, even if you don’t know what to say to them, let them know that you are there for them, even if just to listen.
James Riley: Dad.
* And so, as with all good stories, this one too had an inevitable sequel (well six in this case). I am one of those sequels and as such I have inherited Dad’s vagueness and impressively unimpressive memory. And, though the scripting may not be quite up to Pa’s (I actually feel apologetic for that pun, sorry) and the special effects in this episode aren’t quite up to the originals’, at least the setup and directing was good. It was not until I wrote this blog and posted it that I was reminded by my Sister that Dad had even stayed with her in Oz for a while. I had genuinely forgotten it. I’ve more in common with my Dad than I realised. This poor memory and vagueness of mine is something that I know will mask or camouflage the early signs and symptoms of dementia should I ever suffer from it. But, should that day ever come, I hope that I too am able to remember the lyrics to songs I had long since forgotten and that I am able to enjoy my days with my beautiful wife introducing her to the Inkspots, Mills Brothers and constantly asking her, in the style of jimmy Snozzel Durante, whether or not she “ever had the feeling that she wanted to go”, or she, “ever had the feeling that she wanted to stay?” as my Dad so often did.
For the parts of this story that were missed when Dad stayed in Oz with Julie and her family, please see below. Happy reading:
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