My Demented Dad: the A word

Jill Sinclair

Friday 16 November 2012

My name is Jill and my Dad has dementia.

But please take that look of horror and pity off your face. It could be worse.

What was really tough was living 400miles away and trying to manage a patchwork of care for him from a distance.

Phoning up to hear that the television was on and catching the sound of a referee’s whistle and some chanting. Football! They’d put the football on! Dad has never liked football, never been to a football match in his life and would have hated this. Or asking Dad what he’d had to eat and hearing in his voice a kind of inability to answer, which was not just the dementia but also a kind of weariness - how exactly do you describe a 'basic value' microwave meal, slopped on to a plate in a gloop of tasteless, soggy mess, which gives no pleasure, precious little nutrition and doesn’t even leave you feeling full? And when one of Dad’s support workers rang me to say that she was on the front doorstep, the GP had just arrived unexpectedly, and that they were locked out, I wanted to say: ‘Just wait right there. I’ll fire up the helicopter and I can be with you in 10 minutes.’ Instead, I suggested the neighbour across the road, who might or might not have been in. ‘No worries’ the carer then said, ‘we’ve just found that the back door was left open so we got in that way.’ As if that was meant to make me feel better! The back door left open and my Dad, by now unable to do much for himself and certainly not capable of distinguishing a ne'er-do-well from the fleet of carers who came and went, in a house on his own, with the back door left open. I knew this was not the Glasgow of the 1970s when I was growing up and would never wear high heels to a party or a disco in case I needed to make a run for the exit when the fights broke out, but even so. My Dad has dementia and I am the Spinster Daughter. Again, if you could take that look off your face, I’d be grateful. I’ve had my moments. Although, obviously, it could have been better. I am now the same age that my parents were when I left Glasgow in 1976. I was leaving for a promotion in London and thought I would be waving goodbye forever to the miserable Scottish weather, the lack of vegetarian options - no I couldn’t just ‘pick out the meat bits’ -, and the memories of a school that valued regulation tights (American Tan, of course) more highly than any ambition to do more than marry well. ‘You want to do jour.nal.ism? We don’t have a handout for that’, said the teacher in charge of careers advice. ‘Have you thought about being a primary school teacher? At the time of leaving Glasgow, all my friends had their parents intact, some more frayed around the edges than others, but they were alive. Now, 30 or so years later, I’m back in the house where I spent those teenage years listening to music, applying make-up and smoking Embassy No 5s. My parents had been fantastically accommodating. Their open door policy meant that ours was the house that other people ran away to; a place with an unlimited supply of cheese-and-pickle sandwiches, a tin always full of biscuits, and neighbours who never complained about the noise. By now, those same friends are married or divorced, or married and wishing they were divorced, and some are even grandparents! Like me, most of them have only one parent left alive and, also like me, some of those parents have dementia. Dad was diagnosed with Alzheimer’s in 2009. I sat in the room while he was asked a series of questions and watched as he struggled to remember the simplest things. Even though I knew what was coming, when the doctor said the A word, I burst into tears. And then a day or two later I had to get on a train to London, promising I’d be back soon and wondering how on earth this would all work out. Both my brothers and my sister live in the south, and have families and jobs and other commitments. We had all tried to persuade Mum and Dad to move to be nearer to us, but they wouldn’t. Even after Mum died, Dad wouldn’t consider it. So he was on his own. And now he had dementia – he was high functioning, the dementia wasn’t so debilitating, yet. But we knew he would get worse. After three years of muddling along, of trying to juggle the care, of having to cajole and support, berate and be grateful and, hardest of all, figure out what was really going on when I wasn’t there, I decided to move back home and take charge. My name is Jill and I’ve moved back to Glasgow to look after my demented Dad. The strange look you have on your face now? I recognise it. It’s a bit how I’m feeling. Wish me luck!

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My Demented Dad: the A word

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