THERE are many ways you might imagine your ideal life to look at 25 — and mine was all going according to the script. An ambitious graduate, I’d moved to London, dated unsuitable men and worked in a fancy job with poor pay and ridiculously cool perks. Goodbye, rural south Wales. Home for me now was an utter hovel with like-minded people and a fast-growing collection of beautiful shoes I couldn’t really afford.
All was well — and then real life got in the way. My dad, David — a proud, charmingly intelligent, self-made man who made people laugh — was in the grip of early onset Alzheimer’s aged just 60.
His brilliant mind, which saw him building power stations and almost literally bringing light into the lives of others, had succumbed to darkness and he was proving too much even for my supersonic mum, Marjorie, to manage.
So I left London and all my dreams to return home. It felt like a backwards step, especially because it was forced upon me and not a choice. While the same teddy bears rested on my pillow and the view of the garages behind which I’d had my first cigarette and kiss remained the same, so much had changed.
There was nothing comforting about it, as anyone who has experienced a parent’s illness will know — the child becomes the parent, the cared-for becomes the carer. But it wasn’t a shame and it wasn’t a tragedy and it wasn’t a chore. It was an honour. To be able to return the gift of love someone bestows upon you was a gift in itself.
Alzheimer’s shows no compassion to those it takes. It is far bigger than you and far beyond your control so you take each day as it comes and learn to love the changes it forces upon you. Dad, for a while, became more gentle.
But his swearing went through the roof, always inappropriately and always hilariously — he dropped the F-bomb on strangers with alarming regularity. Then there were the games of hunt the object (phones/keys/remotes) he’d place in random locations.
Part of the journey was getting to know him all over again — the new bits added by his dementia and the old bits robbed by his illness.
My mum, my brother, Gareth, and I would look on in wonder as he came out with anecdotes we had never heard. We were bowled over by his ability to remember something we’d all been unable to recollect.
How wonderfully his beautiful mind worked, even when it was breaking and disintegrating. And in the months following my move home, it disintegrated very quickly — a mercy if ever there was one.
Among all of this, I felt selfish for yearning for ‘my’ old life and its freedoms. I started a journal to express my innermost feelings. Inappropriate humour became my coping mechanism, finding a way to smile when everything seems utterly bleak.
To see a loved one in pain is awful and the breaking point came after about four months when Dad’s behaviour towards me became violent and threatening. We felt great guilt in having to put Dad into a care home but ultimately it was the only option for him to be able to receive a level of care and attention we weren’t able to give him.
It was here, four months later, that he finally passed away. After a time, I moved back to London and looked again at my journal. It was not intended for publication but, ten years after first moving back home and now living in Richmond with my husband and a first baby on the way, that journal is now a book.
Since it was published, people have contacted me to say they had similar experiences. I know now that all along I was not alone. Many things Dad did during his illness were commonplace, as were my accompanying feelings — both good and bad.
It’s a book about my dad, it’s a book about Alzheimer’s, it’s a book about caring and it’s a book about change. Your life doesn’t always look the way you might have imagined — and that’s OK.
My Mad Dad: The Diary Of An Unravelling Mind by Robyn Hollingworth (Trapeze) is out now