£119 billion: The contribution of carers and savings to the economy is woefully overlooked

As a carer, if I had to give you my rating on a scale of one to ten with ten being great and one being beyond crap I’d say I’m at three currently.

I operate at about a six most days.  Looking after my two girls is knackering. Let’s face it, looking after anyone 24 hours a day, seven days a week is exhausting, but with learning disabilities added this exhaustion is often combined with challenging behaviour and in my case, broken bones. I’m typing this piece with a broken finger which is annoying, but more annoying were the broken coccyx I got previously.

I say annoying because the violence which caused stems is not from cruelty, but rather from turmoil of mind over which my daughter has no control. She is quite simply one of the loveliest people I’ve ever met. But teenage years are tough enough without learning difficulties – the addition of them makes a tough time just that little bit worse.

No matter where anyone falls on the spectrum of teenage angst the accompanying parent ‘hatred’, is a necessary part of detachment. Neurotypical teens can indulge in a venomous comment, screamed or spoken coldly with a side order of a withering look and a little cathartic swearing chucked in. This release is a given, as families navigate through the caustic bio-chemical cocktail which is hormone fuelled adolescence. It’s necessary because at least on some level unless your children partly loathe you, they can’t leave you.

The difficulty we’re facing though, is that with a learning disability the need to leave is tempered by a lack of linguistic tools to wound. My daughter can feel the fury and feel the age-appropriate parental blame, but she has nothing to express it as effectively as a punch.

This is the route for non-disabled teens too of course, but gifted as they are with the choice of self control and an IQ within normal range those teens often wish to reconsider. I should make clear it isn’t the route for all disabled teens. Only those who experience it, who live it, can fully understand it and the choices you make as parents don’t begin and end with babies. In fact it could be argued that you only really understand your efficacy as a parent when the challenging years begin.

A resistant toddler can be picked up and carried to the place they do not wish to be. Not as simple with an adult child hell-bent on their own agenda. Irrespective of the facts, of the heartache and the bone break, there are still many whose opinions we have to endure. It seems judgemental attitudes are a luxury for those with too much time on their hands and a misconceived notion of their own flawless decision making.

It’s probably too simplistic for me to try and tell you now how much I love my children – the only way to describe loving someone with a learning disability autism and epilepsy is that is parenting plus. The plus being a fear of what will happen to them after we’ve gone. If the question is “who will love my children?” the answer that wakes me repeatedly is “who will harm them?”.

So in terms of challenging behaviour, that’s the way as I see it.  I ask that question a lot. The trick is not to add a “me” to the end of it. The notion that any one of us should be so special, so ‘undeserving of disability’ to remain unaffected by its indiscriminate nature, is an odd form of arrogance I think. “Why not me?” is a much better question. Indeed why not any of us?

Carers UK is a charity which understands the “Why not me?” question well, for Carers week they published the findings of their In Sickness and in Health report.

The findings made for sad but familiar reading. Of the 3400 carers who were surveyed:

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• Jubileegirl

  If every carer in this country put their loved one/charge into care, the cost to the country would be bankruptcy.

• http://twitter.com/Simon10538 Simon

  #Carers are paid less than £60 per week, we work harder than anyone else in any of the Private or Public Sectors. Carers work 24/7 365 in all weathers, during holidays. it is more a way of life. Do we get ill? we do, and it’s hard when shaking like a leaf, with the flu to cope.

• http://twitter.com/Simon10538 Simon

  #Carers are paid less than £60 per week, we work harder than anyone else
  in any of the Private or Public Sectors. Carers work 24/7 365 in all
  weathers, during holidays. it is more a way of life. Do we get ill? we
  do, and it’s hard when shaking like a leaf, with the flu to cope.

• JohnnyDuke

  Annual 24 hour coverage by a carer at NMW, a carer over 21 on the post Oct 2012 rate should be in receipt of £6.19 ph £54,224.40

  In reality they will receive just £2,860.00.

  Now … who honestly thinks the Government (any Government) will change this unless forced in some way?

  How many believe that any possible change will in any way approach the true value of the service they render.

  This is just another example as any were needed to show what contempt for the little people is held by our Political classes.

  I know from experience that carers do the job for love not money, as money is little compensation for witnessing the suffering of a loved one. However a reasonable amount of financial assistance to cover the essentials such food clothing, heating and if relevant housing costs. I realise that there are other benefits that can be claimed but as anyone who has ever tried will tell you actually getting them is not as easy as it sounds regardless of the worthiness of your case.

  without wishing to sound patronising, condescending or flippant in any way I really do hold you carers in the highest esteem and hope that if the time comes for me to step into those shoes I can do it with the same fortitude.

• Midwinter1947

  Wayne Rooney ‘earns’ more in a week than a carer on minimum wage will earn in 10 years.

• Rihari_Wilson

  With respect, your logic is faulty. If it is “doubtless valuable work”, it must contribute to the economy. Money changes hands and is spent so it must be part of the GDP. There is the cost saving to the state through the use of underpaid labour. I am surprised because you look like a fairly decent dog to me.

• Dr_Taylor

  I wish there were more people like yourself around, it seems that this kind of empathy is dying out, but gives me hope that there are some people who still have compassion.

• JohnnyDuke

  That is very kind of you to say.

  Thank you.

• http://twitter.com/Abbotsram Fowkesy

  Well that’s unless you’re retired then you get nowt!

• http://www.facebook.com/barbara.grant.161 Barbara Grant

  Oh My word, that is so close to my world at the moment, my 10 year old non-verbal daughter has hit puberty early and is lashing out at me with increasing violence and regularity. We also have a 17 year old son with Autism, PMLD etc etc. and a neurotypical 13 year old (gruesome adolescent!) As a family are in the process of making a caomplaint against our local authority about long term unmet Short breaks needs that have been allocated but no fulfiulled for over a year and pushing our family ever closer to the brink of exhaustion and collapse….