Tag Archives: neurological condition

The invisible patient

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The invisible patient

To the woman who grabbed her children closer to her and stared at him as he spoke too loudly in the coffee shop…I’m sad for you.

To the people who have shoved past us in the supermarket or shopping centre despite his obvious mobility limitations…I hope you’re always agile and active.

To the GP who talks about him, in front of him. Describing him like a test tube subject or experimental case study…he can hear you.

To the visitors who dwindled when he didn’t ‘get better’…we understand. It’s hard, he’s hard work but I promise that you’re missing out on laughter, joy and entertainment. You’ll always be welcome if you change your minds.

To the nurse who spoke directly to him, who asked his name, explained her treatment and demonstrated patience, kindness and humour on a busy night at an out of hours walk-in centre…thank you.

To the doctor who came out of his consultation room to meet him halfway up the corridor. Who shook his hand, waited as he got muddled with his responses and made sure to get to the bottom of all of his issues (breaking the rules about ‘one issue per visit’)…thank you.

To the carer who challenges him, who doesn’t spoonfeed him and mollycoddle him, who gives him the time and patience required to force him into action…thank you.

To the man at the supermarket who refused my offer to go ahead of us as we shuffled painfully slowly in on a busy day, telling us ‘you go first mate, I’m in no rush don’t you worry’…thank you.

To our family and friends, for the funny texts on the hardest days, for the paperwork, the doctor visits, the lifts, the Christmas gifts, the moving crew, the furniture, the understanding, the patience and the overwhelming love…thank you.

To our dad, some days (like today) drive us mad. You don’t mean to, you just require a lot more energy and patience than you ever did before. You get tired and forgetful, we get tired and grumpy, we snap and you (somehow) end up being the one to say sorry. You have a beautiful heart, a cheeky sense of humour and so much love for your friends and family. You’re doing better than you’ll ever know, and even when you’re driving us round the bend…thank you.

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Facing the challenge: A brave, new dad

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Facing the challenge: A brave, new dad

Unsurprisingly, this post is about my dad. I don’t mean to sound like a broken record, but he’s pretty much front and centre every day. In previous posts, I’ve focussed on my Grandma, my mum, and my siblings but there’s very little about my dad. So I figured it was high time. I’m only sorry that his accident and injuries are the catalyst.

My dad is my best friend. I know that it’s easy to see relationships through the rosy perspective of hindsight when something traumatic happens, but my dad genuinely is my best mate. Always has been. Before his recent accident I’d talk to him every day – he’d send me texts about the Dartford Crossing traffic (always handy to have a cabbie as your dad), ring me about our friends at the pub or to share some family gossip, and check up on me if he knew I had a big presentation, or if I was feeling poorly.  He’d also send stupid jokes, let me know what he was up to and text me goodnight. Rarely a day went by without hearing from him. So the accident hasn’t really taken my father away from me in the traditional sense, it’s taken my right arm.

Hilary-&-Andrew---25th-August-2014---817

It’s been two months but every day I have a forgetful moment and see or hear something I want to share, pick up the phone then remember he isn’t on the other end. I talk a good talk about being de-sensitised to his condition, about being open-minded when I visit and knowing that I might not always get the best version of Daddy. But honestly, when I walk in and see him yammering away about nonsense, it’s heartbreaking. A teeny tiny part of me will always be about six years old, desperately hopeful that everything will have magically fixed itself overnight. Unfortunately, six year old me is always disappointed.

Google Translate, for Dads

It’s like someone removed one of the circuit boards in his incredibly intelligent head. The words are there but in the wrong context and the wrong order. We’ve all become expert translators. Half-baked sentences like “Get some fish, get some chips, get one chips and some chips. Then you can come back” translate to “I’m hungry – sort it out”. The other day, he was really agitated – very upset and tearful and repeatedly begging me to help him. I stroked his hair, held his hand and told him “You’re my best mate. I’m not going to let anything happen to you”. He replied with “You’re my one, always”. Maybe I’m naive, but I took that as a declaration of our status as bessie mates. No friendship bracelets or blood oaths needed.

He’s started swearing, with no concern for the consequences – something really out of character for our mild-mannered dad. We’ve had to learn to laugh. What else can you do when he (loudly) declares that a passing nurse or doctor is an “Arsehole!” but sheepishly apologise and giggle? Today I asked him what hurt, “My head and my arse!” he shouted in response. Thanks for that, Daddy.

embarrassed-chimp22

Some moments he’s clearly lucid, he tells us what hurts and asks us to help him. You’d imagine that these were the best moments, when we get a smidgen of Daddy back. But weirdly, they’re actually the hardest. What do you say to your neurologically confused dad when his eyes well up and he asks you to help him, as if he’s a toddler? It’s hard to celebrate his recovery when he asks you what year it is and tells you he’s “mixed and muddled” when you give him the answer. Or when he seems more aware of his surroundings and shouts that he wants to go home for the duration of your two hour visit.

Not just a patient

But that’s now, and my dad hasn’t always been a brain injury patient. He has, however, always been crazy. My parents split up when I was about 4 or 5. They did it pretty amicably and are good friends, so I’ve never struggled with seeing him or staying in contact. Our weekends with him as kids were hilarious.

We had midnight feasts when he woke us up with a pile of chocolate (I’m sure it wasn’t actually midnight) and we all tucked in together. He let us draw on his ridiculously un-ticklish feet just because we thought it would be funny. He taught all three of us to puddle jump – wellies not always required, much to our mothers’ annoyance. He once went to his pretty swanky gym with multi-coloured toenails because my baby sister asked if she could paint them and he’d forgotten. When I was about 11 and just getting to the ‘how embarrassing’ stage of adolescence, we went to Disneyland Paris. He and my then 7 year old brother decided to impersonate orang-utans walking into the park, in public, loudly.

But it didn’t end when we outgrew childhood. I moved in with my dad after university, the first time we’d lived together full-time since the divorce. It lasted 18 months before I left to live with my now-husband. It was great.

He’s a night-time cabbie and I work 9-5 so most of the time we were ships in the night. But that didn’t stunt his creative imagination. I’d wake up to a packed lunch, smile at his thoughtfulness until lunchtime when I tucked in and found Post-it notes inside my sarnies. Messages like “Your turn to make lunch tomorrow” and “Yum, yum in my tum” are slightly embarrassing to retrieve in front of your colleagues at your first grown-up job. I even got home one day to find he’d sellotaped my sister’s giant Winnie the Pooh toy into the driving seat of my car (parked on the main road), strapped a Fruit Shoot to its hand and stuck a Post-it on the window that read “Don’t drink and drive kids!”. Weirdo.

winnie the pooh

The road is long

All this reminiscing makes me smile, but it also makes me horrendously sad. I didn’t think there was such a thing as ‘past crying’ sad, but I am. I feel a bit like one of those pieces of Ikea furniture that’s missing something vital – it does its job but it’ll always be a bit wobbly. But I’m not a victim, nor am I a martyr.

I’m not the only one struggling and my siblings and our family and friends are all getting used to our post-accident reality too. We’ll keep muddling through and once Daddy gets a long-term rehab place at an appropriate facility, I feel hopeful we’ll see some more progress. Despite this though, he’ll be changed – the accident was a huge deal and will undoubtedly leave permanent physical, neurological and emotional scars.

But he’ll be here, with us and that’s the thing to hold onto. Awful, horrible things take people’s loved ones every day – war, disease, violent crime and freak accidents. This isn’t easy, and we’d be idiots to pretend otherwise, but Daddy is conscious, stable, he’s made tremendous progress in only 2 months, and he’s capable of telling us he loves us. We’re selfish to demand any more of him.

For my part, I’m trying to accept that this is as good as he gets. That way, any progress is a gift. And in the meantime, if you’re reading this in a few months, or a few years: Daddy, you’re my one too, always.