If you can’t see them they don’t really exist. Why we confuse carers and fairies

I wrote at the end of the old year, about the crap side of being a family carer. I didn’t hold back. I guess I hoped, rather unrealistically, that maybe someone at the thoughtful turn of the year might notice this – some politician, some (fill in blank)-list celeb, some campaigning journalist – who might take up real live cudgels on our behalf..

.. but by and large the only response I got was from other family carers. Again.

Looking at it realistically, I suppose that if your society works well and more cheaply by having what is essentially a slave-force of 6.4 million (one in ten of the population) that you delight in patronising, and refuse to acknowledge, one extra angry carer isn’t going to open your eyes or unstop your ears…

…And no party is happy to take on a problem with so little party-political advantage. There is no constituency of carers, and thus no benefit in improving their lot. Carers have been failed by every government going for as long as I can remember!

…And if you are making money out of being a pundit it’s hardly news that 10% of the population have been living in a terrible state since goodness knows when.

So, folks, what will make you take us seriously? You have so many good reasons why you don’t:

One of your alibis is – of course – vicarious empathy. If you worry a lot about an elderly parent and visit them once a month, you might end up thinking to yourself “We’ve all been there.” I can give you the twitter addresses of three or four mistaken individuals who have told me as much. Folks, this is an unbelievably arrogant, disrespectful thing to think – let alone say. Change places with a fulltime carer for a month, watch your job, your social life, your identity go down the pan willy-nilly, imagine this will continue for years, decades –  and then come back to me and say “We’ve all been there” again.

Another alibi is the media’s ‘it’s just not a story’ line – which we carers might consider is merely lazy journalism. ‘Hanging on in quiet desperation’ may be the English way, but someone has clearly decided it doesn’t sell papers, programmes or advertising unless it happens to someone in the media. Like nothing is real unless it happens vicariously to a Fleet Street journo. (Who suddenly has to look after an ill partner for a few months and feels aggrieved. No shit, Sherlock). Now, I wouldn’t want to wave a magic wand and turn every columnist in the land into a tragic parent, partner, child – but I wish I didn’t have to wish I could in order to end this sloppy solipsism and navel gazing.

Yet another alibi for inaction is clearing your conscience by offering inappropriate support. The only carers’ charity within 50 miles of me historically gave a great deal of support to carers in a totally inconsequential way. Basically if you left the person you cared for (costly and often difficult) and drove 20 miles (assuming you had a car) you could have pampering sessions and use of a carers’ café, in the countryside, miles away from any public transport. Wtf? Who is this making feel better? And who decided this was any sensible use of the funds available? There may be a natural human urge to do something – but its very important to make sure its the right thing. I don’t want aromatherapy – I want a bit of my life back! Sorry to sound ungrateful.

A further alibi is the divide and rule approach. We carers are accorded little autonomy – in fact we are usually referred to in terms of the illness/disability/syndrome of the persons we care for. Yet what holds us together? What we do, and the truly awful conditions in which we do it!  We need a union. Only the unions won’t represent us because we don’t ‘work’.

Your final clincher is expense. “We can’t afford to support you.” Oh no, my dears – the truth is, you can’t afford NOT to support us! You pay out the munificent sum of a means-tested £59 per week in carer’s benefit – that’s a whole 35p per hour you mad, generous fools! And so you’ve clearly never sat down and thought how much it  would actually cost to replace 24/7 specialised, knowledgeable care for one person.  Well apparently, the figure is £187,000 a year. Per person. That’s £187 BILLION annually to replace the UK’s million 24/7 carers. Knocks that 35p per hour into a cocked hat, doesn’t it?

Movers and shakers of Britain – you hold us carers over the barrel of our love and that means we can’t and won’t strike – ever. But people working unsustainable hours without a break for years, decades, may eventually crack. And when they crack it will cost you a fortune.

So what is your plan B?  Shut your eyes and wish?

Tomorrow: how we (you!) can put things right for carers

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4 Comments

  1. Pingback: Carer 2014? Prepare for a future you didn’t expect | Carer with Attitude!

  2. this is awesome…i am a full time carer for my 13yr old daughter, i am a single mum and also have a 15yr old son. i dont drive and my nearest family is over 30min car journey away. Recently on a shopping visit to town Carers direct had a stall, but when i explained my situation to them they told me they couldnt offer support localy as i carre for a child not an adult….i am utterly exhausted, my daughter used to stay every other weekend with her dad but hasnt now for over 2yrs, so this is it…this is my life…i love my daughter with every fibre of my being, but god would i like a life too…or just a whole nights sleep x
    12 minutes ago · Like · 2

    Like

  3. I am I the same situation my son is 32 and I have 3 adult sons and 3 grandchildren because of his disability he does not tolerate noise and is very possessive of me his dad died 14 months ago and my respite was when he went to his dads for weekends his dad was ill and moved in with him while on treatment which I did all the caring for and transporting to appointments I have asked for some respite care as its over 2 years since I had a day off and was met with no money for it other option is 24 hour care home again preying on love as it would destroy both of us me because he is my son and my life and him as he has just lost his dad ,where is the help !

    Like

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