The Accidental Tourist

This week has been Carers Week in the UK. There have been a lot of insightful and inspirational blog posts written about it, tweets galore. I read the stories, tears fall with sympathy, the jaw tightens with empathy. But I don’t collect Carers Allowance, I can’t because I need to earn the bread, and because we are lucky enough that Rufus’s needs don’t preclude him from non specialist childcare. But mostly because I have an unhealthy amount of denial about his care, it’s my normal. And I would feel guilty, because we don’t really need it, do we? My buttocks clench when friends and family sympathise ‘it’s hard enough when (insert their offspring here) are ill, but I can’t imagine how hard it is for you when Rufus is ill.’ I know what they’re getting at, and that it’s full of compassion, but I wince internally at the injury to my heart. Because to the outside it’s not normal.

In amongst a veritable shit storm this week (literally, the aroma has invaded every pore of my senses, thanks to Rufus’s malfunctioning gut) culminating in the impending labour of my new nephew and the Wolf taking respite, visiting his mam in the North, I was urged to write down a handy How To Care for Rufus for 24 hours. I knew I was going to have to do it at some point for when mini-est D makes it’s entrance into this world, but I was going to be able to do it in chunks. Bite size morsels that would allow me to not have to pop my denial bubble.

Nine pages down, I knew this wasn’t exactly normal. Now, I may have my moments, but I’m honestly not one of those Mums who obsess about everything being just so. Mum’s are all carers aren’t they? Training the childminder on his feeds was a doddle, she only has two in her day with him to get through. We still had charge of the dodgy, vomit inducing overnighter and first feed of the day. The beasts. And she only had one medicine to give, already pre prescribed and given to her in a handy doggy bag. No trying to really explain the making up of feeds, the venting of wind, the management of the ever present reflux over a full 24 hours. This go to guide I was writing just covered feeds and medicines, and was still nine pages. It just keeps him going, growing. Skirts round the developmental stuff that also eats away at the waking hours.

My Dad took it, photocopied the pages and made a cover. It is funny, seeing it in print. But it’s profound too. My parents are parents (obvious), they had me. They have other grandchildren. But Rufus is the only one with a manual. And it’s not a manual given to me when he was born. That would have been nice, as I fumbled in the dark for a way to get him home, get him to a stage where he would be well enough. It’s taken nearly two years because I’ve fucked up along the way, pardon my French. And I still am, daily, because like all parents, I’m doing my best.

Thanks Dad!

Take Friday night, sleep deprived and hormonal, I attached the boy to his feeding pump for his overnighter. Medicines had been given, flushes done. Tube ready and unclamped. But I didn’t turn it on. And I didn’t notice for three hours. And I tried to not meltdown about this, as I chewed on my cheek and paced his room, thinking of how to make up those vital calories. I won’t let him fail to thrive, and sometimes the burden of that is too much to bear. But was he bothered? Couldn’t give a sparrow’s fart. Frankly, he’d be happier if I didn’t permanently leave him feeling a bit full, milk sloshing around like a barrel of rum on rough seas. Time to step back, sometimes my face is pressed so close to the window I can only see my own breath.

And that’s the kicker. When some more mathematically minded parents (you wouldn’t think I was a buyer) calculated that carers allowance grants them a grand total of 34p an hour. Nobody chooses to be a full time carer. I don’t think I’d be up to the job. But what parent wouldn’t faced with it? Sometimes I get asked how I cope, well, I don’t a lot of the time. But I have to, you would have to. And it’s a sliding scale, I know I’m lucky and I hope in no way does that sound condescending to parents who are further on the scale. I don’t think of you as unlucky. That’s just trite. Carer’s Allowance is the insult.

34p doesn’t pay for basic needs, again, obviously. Would you think that a fair wage if your job made you fight until your throat was dry, your patience was ground down to nothing and your heart could take no more. If 24 hours a day, you took your job with you. You literally carried it everywhere. Your boss is always on your back. And if you never knew what you were working towards, goals set and moved, when would you retire? And no matter how difficult it is, you never, ever want to lose your job. Even when they scream day and night until you break down and cry (sob more like, snot bubbles and all) in the Boss’ office in the small hours and leave a trail of poo in their wake for a week. Because it’s your job.

And my part time job doesn’t ever give the job satisfaction that a smile from the boss of my full time job does. The harshest critics give the best reviews.

The Boss. Bit blonder than Bruce Springfield.

3 thoughts on “The Accidental Tourist

  1. After reading all of the posts, tweets and other things I have this carers week, I think this hits home with me the most. I have been there with the breaking down and crying, the tiredness and the forgetfulness but as you say you have to get on with it as it is a 24 hour job with all of the moving goals etc. that you mentioned.
    You are so right when you say that there is no better satisfaction than when your child smiles at you and you think, even if it is for a split second, that you have that connection with them and they appreciate all of your efforts.
    I loved reading your blog, keep it up 🙂

  2. i would just like to echo the comment above , what a fab blog well done please go a head and read mine at xxxxxx

  3. Great post. I too meant to do one for Carer’s Week, I’d never thought of myself as a carer at all until doing the (frankly vast) forms for Disability Living Allowance for our son. Where is the line between mother and carer, it’s hard to distinguish isn’t it? Takes us all a while to self-identify with the carer’s role I think. And then if we need financial support, well, it’s just not really there, is it?

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