In all the personal stories of people living with dementia (and I’ve heard hundreds over the years), there can’t be one more heart-breaking than this. It’s a soul cry from a man living with dementia, afraid of the danger his night terrors could be to his beloved wife, and at the same time wanting to encourage all caregivers, telling them they are not alone. Norm has given permission for it to be reproduced here. He wrote,
‘This night there was no warning of a bad night to come. Elaine, my wife, says usually there signs like myself twitching in my chair, arms jerking or my head darting from side to side as if I am looking for something just before I go to bed, but not this night. Sleep came quickly as always but the darkness soon arrived, the darkness is what I call dementia itself. Within the deep recess of my mind, a battle was about to begin, my night terrors had arrived.
‘No matter where I looked I saw it, (dementia) in the corner of my eye, following me, taunting me, calling me, mocking me. I began to run but it chased me, I hid in the shadows, but it was there, only feet away, snarling, clawing away at my sanity. it was only a matter of yards away, and then it happened, I turned and faced it, looked it in the eye and summoned strength I never thought I had, It was time……..
‘I took a deep breath and ran towards it, screaming, shouting hoping it would disappear, but it just stood its ground. I got closer and closer, it seemed an age before I reached it and as I did, my arms came up, my fists clenched and my legs kicked, I screamed, clawed punched and kicked as hard as I could, I was relentless, pounding and pounding its grotesque shape hopefully into submission, I felt something wrap around my legs first, then my arms, until I could hardly move, still screaming hurtful obscene comments at dementia, I wriggled and struggled to escape my restraints but to no avail.
‘My eyes opened so very slowly at first, still trying to get my bearings and still struggling to get free from whatever it was that was holding me. As all became clear I saw the incredibly beautiful eyes of Elaine, holding me tight she had somehow managed to wrap me in the sheet and held me firmly, she had my legs held in like a scissor lock with her own legs until eventually I slowed to a halt and realized it was once again one of my night terrors.
‘We held each other for so long, strangely, at first, for a minute I didn’t want to be unwrapped from the sheet, I felt safe, and I also knew, MORE IMPORTANTLY, so was Elaine, but oh, the anguish of thinking – what if I had hurt her? The thought still makes me shiver even now as I write. The thought of accidentally hurting someone I love and adore so much makes me sick to the stomach. We have talked about separate beds but Elaine always says not just yet, and for that and her bravery I love her so very much.
‘Elaine was a professional carer for more than 30 years before finishing to look after me, and has so much experience in this – but what of the others? What of those with no experience of anything like this, those who didn’t ask to become carers, yet are, those wonderful incredibly brave people who walk this earth ?
‘Those are the people I write this for, they are the ones I dedicate this to as I hope to help them understand that it’s the illness and not the person who acts like this, and more importantly to say – YOU ARE NOT ALONE!’
Norm’s ‘shout-out’ challenges every responsible adult living in the UK. Especially since Prime Minister Boris Johnson announced that there will be no implementation of a new social care plan for at least five years. It means that millions of dementia caregivers like Elaine will have little or no support. Many develop life-threatening illnesses – even dementia, themselves. His statement was met with a stunned silence, that begs the question – where are the voices raised in protest? How can this be tolerated in the UK – the world’s 6th biggest economy? Have you spoken to your MP about it?