My mother was my father’s primary carer until her death in 2013 and since then care has been shared with my siblings. I cannot speak for them (or for my father) but for what it’s worth, here is my perspective.
In January 2008 my father sustained permanent brain damage when he was knocked over by a car that had lost control and careered onto the pavement, right where he and my mother were walking.
Ever the gentleman, he had been walking on the outside of the pavement and took the brunt of the impact.
Even now, more than nine years after the event, I still can’t believe I’ve written that. It sounds so surreal. Melodramatic even. Doesn’t that kind of drama happen to somebody else? We’re such an ordinary family.
Your life has changed forever
But I guess that’s the trouble with traumatic brain injury. The affects are extraordinary but it can come out of such ordinary, everyday events. You go out for a stroll to post a letter and bang! In a fraction of a second your life has changed forever. You only need to be in the wrong place at the wrong time. It’s the kind of thing you’d best not think about too much or you’d never leave the house.
After a long stay in hospital Dad came home and his rehabilitation continued. His cognitive processes, speech, eyesight, personality and mood had all been affected by the accident. I couldn’t outline them all in one article but some things particularly stand out.
There was something extremely humbling about sitting and helping my Dad to read again; prompting him as he practiced writing his ABC in wobbly letters. He used to help me when I was a little girl and it never occurred to me that one day the roles would be reversed.
But at least those were things that I could help with. The physical side of Dad’s injuries I always found easier to deal with because they are things it’s easier to help with. Helping him to read and write again; to do up the buttons on his shirt or walk down steps. Practical things to which I can offer practical help.
But it was the cognitive and emotional changes that were harder – for Dad too, I think.
For an articulate man it was hard to see him struggle to find the right words to express what he meant. Fortunately, he didn’t get as frustrated as he might. Sometimes he would just give up with a shrug, but you could see the disappointment in his face.
He also found it hard that he was no longer able to be the man of the house.
My Mum and Dad had traditional roles. Mum was the homemaker and ruler of the kitchen. Dad had been the main breadwinner and he organised all the legal and financial paperwork, did odd jobs around the house and took the car in for it’s MOT.
After the accident Dad could do none of that. His cognitive processes weren’t up to it. He could understand what was explained to him but he might have forgotten it by the end of the day. Faced with an insurance document or a bank statement he would struggle to make sense of it, especially since his reading was limited.
But he loves to feel that he’s being useful. “Can I do anything?” he’ll ask. Even the smallest things will give him pleasure and a sense of purpose. Drying up the dishes, slowly and methodically, or sitting with me on the sofa shelling some peas into a bowl. For an intelligent man who’d had such an interesting and responsible career, at first it was sad to think that this was now his role. But that’s just one of many mental adjustments we’ve all had to make.
He is aware that his brain doesn’t work properly. “I’m daft,” he will say. “My brain” he’ll say, shaking his head sadly, as if it’s all just one big mystery. Sometimes, more heartbreakingly, “I’m useless.”
He remembers nothing of the accident and so has no understanding of just how far he’s come. “Why am I like this?” he’ll ask. When we do remind him that he nearly died, that we all thought we’d be pushing him around in a wheelchair for the rest of his life, then he does gain some sense of how well he has done. At least for today. We’ll need to remind him again tomorrow.
With a brain injury people can look the same as they did before and that often means people fail to appreciate the damage that is still there. “He’s awfully pessimistic, your Dad,” people have said.
But if you damage the part of your brain that deals with mood then pessimistic you may well be. It isn’t a choice. And I doubt any of us without a brain injury can truly understand what it must be like. Dad knows that his brain doesn’t work properly sometimes, but he can’t remember why. Pessimistic? Sounds pretty terrifying to me.
And there were some personality changes. Fortunately for us, they were not so extensive that Dad seemed like a wholly different person. He was still recognisably Dad. Just a modified version (if not upgraded). Dad 2.0, so to speak.
From being a very private person Dad became quite disinhibited. A bit of a loose cannon socially. He tends to say what he thinks, which can either be refreshingly honest or a little embarrassing, depending on the situation.
Before the accident Dad was meticulous at keeping records and other paperwork. In his office we found boxes and boxes of papers and photos. We’d sit and go through them with Dad and his approach had changed remarkably. From a man who threw nothing out (we found the receipt for the first family car he bought in 1960 and a receipt for a fridge from 1971) he became quite carefree about stuff and would have been happy to see it all go. Sometime it was us who put the brakes on. (“That’s your birth certificate, Dad – I think we should hang on to that”).
Dad will be 88 soon and getting a little frail. His brain is tired from all the hard work it’s had to put in over the last nine years.
“You must remember, “ the consultant neurologist told us, “that your father’s brain has to work ten times harder than yours or mine just to function, to make sense of what’s going on around him or to hold a conversation.”
His brain gets tired quicker now but he still knows who he is and who we all are. And his sense of humour still comes through sometimes. “You remember all the important stuff, Dad,” I’ll say. “You remember who I am.” “Yes,” he’ll reply, with that mischievous little spark in his eye. “You’re Charlie.”
He’s done so well, my Dad. I’m proud of him. Looking after him has sometimes been really hard – frustrating, tiring, stressful. But it’s brought us closer together and some of the moments have been truly precious. He’s been on a tough, tough journey. It’s a privilege to have been part of it.
It's a privilege to have been part of it.
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