Does your carer take sugar?

Ok, so over the last couple of posts I’ve alerted you to the appallingly compromised lives of Britain’s millions of family carers and I’ve explained to you some of the ways that are used (consciously or unconsciously) to make us invisible.     

Today, I was going to spread a bit of New Year joy by writing in a more positive spirit. Because you (the state) – and you (each person who makes up the state) –  could put things right. Quite easily. Quite affordably. Quite satisfactorily. Its not magic – all you need is a bit of direction from the people that know. Oh, and the will to do so.

Yes, today I was going to write about how easily and totally I think we can improve things. A sensible post about hard facts and actions rather than well-meaning initiatives, about outcomes rather than intentions. About how we carers need to combine – and you need to see us combined, not a patchwork of regional and disability-defined helpers but a vast army of individuals.  We “have feelings, same as everyone else!”.

However, from carers’ (and quite a few non-carers’) reactions I can see that I need  another post – quite a controversial one probably – called, in effect “Let’s remember why carers are valuable”.

I realise I absolutely must point out that the benefits of retrieving the lives of carers extend far beyond feeling warm and fuzzy about yourselves. Its practical common sense. People talk about the invisibility of disability. Let me tell you it is matched – maybe more than matched – by the total invisibility of the carer. We don’t only provide round the clock support, we are form-fillers extraordinaire, we attend medical appointments to give witness to conditions, we are advocates, negotiators, champions, and the skills we have developed in taking on authority are immense. Authority has realised belatedly that the person we care for has a name, but the best we carers are likely to get is, “Is that mum?” Yet show me the mother of a disabled child, and I will show you a lioness.

The most respect we are accorded is the patronising recognition that we are useful because we do jobs that nobody else wants to do (pretty much as many of the liberal left see immigrants). But just like the economic migrant or stateless refugee, we are defined by what we do and nobody looks beyond to the person and the history behind us.

When I say we have so much to offer, I don’t mean ‘we are just as good as you because we are worthy and selfless and do all this for free,’ I mean,  “we are as good as YOU because we ARE you.“  Skills, training, careers, passions,  hobbies, interests –  everything you  have, we have too.  And tomorrow, in a heartbeat, your skills, training, careers could evaporate like ours.

We family carers are scientists, office workers, medical professionals, plumbers, drivers, musicians, astro-effing-physicists, specialists in all sorts of fields  – prevented from living our lives and achieving our potential by a fate as cruel and remorseless as any Taliban diktat.

And that fate is emphatically not the fate of being a carer. We care for love.

– And it is emphatically not the fault of the people we care for. They did not choose the lives they have, which give us the lives we have.

No, it’s the fate of being a carer in a society that knows the price of everything – and the value of nothing.  One that thinks ‘if you pay peanuts you get monkeys. Dance, monkey dance!

Family carers aren’t paid for the care they give. It is priceless. But the cost of replacing that care (and allowing us to retain, say, a working life)  is very pricey indeed. All too often more than the money that could be brought in.

I’ve been lucky. I’ve been able to earn money by writing – sole earner as well as sole carer – for over a decade. You can file copy even from a bedside in intensive care – but you can’t drive a train, or teach a class or work in a call centre, or run an office or take a blood sample or an international flight or even a train to Basingstoke.

The bitter irony is that so many people see work as a punishment, a bitter unavoidable necessity.  You lucky lucky lucky sods.  Can’t you see the chance of work is a luxury for some of us?

When you blind yourselves to our plight you’re depriving not only us and our families of our potential. You are also depriving you of our potential.  How many Sistine Chapel ceilings would Michaelangelo have painted if he were sole carer of a parent with Alzheimers?

This is about a needless waste of lives and potential. But you can fix this.

And tomorrow I’ll tell you how



  1. Well said !! I’m jealous of my husband who goes to work for a job he just fell into whilst i have had to give up a hard fought for passion, my academic science career. Project after project, MSc 1st class with honours, PhD, Post Doc…cancer research, nutrition papers published in top journals.. a passion I would have done for free…. cruelly taken away from me by severe epilepsy of my child 10 years ago. I still mourn that life I worked so hard to achieve ..with no real chances now only to care for my son 24/7 until I can no longer stand myself. I love him with ALL of my heart but I didnt sign up for it xx


  2. I have specialised skills that I worked hard over 20 years to develop, skills that could earn me 6 figure salaries, but instead as my Husbands carer , I can not afford to live where we want to live, have no personal freedom that others take for granted, No lie ins, no spare of the moment business trips, or shopping come to that. My life before saw a worldwide vision of opportunities now I am mainly confined to 2x 4m square rooms.


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