respite

Guest post: “I’ve lost £100,000 in earnings in two years of caring” – and ‘Outraged’ has also lost her life..

Outraged writes:  “My life before caring was bliss.  I worked in Ireland, in the public sector and was outraged at the austerity measures being imposed on public sector workers.

I didn’t know I was born.

I moved back to the UK two years ago when my mum was diagnosed with a brain tumour.  She had worked fulltime but was also a carer for my sister who has cerebral palsy.   I now look after both of them as they are very physically disabled and thus very physically dependent.

The support family carers can get from the state is abysmal. It is also means-tested.  I am expected to fund respite care top-ups on a carer’s allowance.  Bear in mind the allowance is £61 per week regardless of how many people you care for, and tops-up range from £50-£200+ per week.

I cannot work – no employer wants someone who can’t be flexible, who has to leave work regularly or can’t stay back because of myriad hospital appointments, blocked catheters, toilet calls, or most frequently of all – to pick up the personal care tasks that care agencies won’t do…or more usually don’t do safely.  I have to supervise carers, or  else they would mobilise my mum unsafely -sinks are washing aids, not standing aids!  -they don’t change their gloves (they don’t pay for this PPE unlike me) – I’ve stopped carers from taking stuff from my fridge because they had my sister’s faeces on their gloves; -they leave our front door ajar ALL THE TIME.

The state pays £400/week to these agencies for providing 33.25 hours of care.  I get £61/week Carers Allowance for 118 hours.

The red tape is endless… disability allowance, carers allowance, personal independence payments contracts, housing benefit, means tested assessments for housing support services, care in the community services, pensions credit, support with health costs, carers leave application to my employer. These are reviewed annually.

On a daily basis I am to my carees:-  *  Nurse,  *  physio, *  PA, *  secretary, *  social services advocate, *  chef, *  cleaner, *  chauffeur, *  personal shopper, *  limb-mover,*   pharmacist, *  debt manager, *  banker.  I feel like I do so much more, I am that tired.

I’ve lost circa £100,000 in earnings in two years of caring.  For this the state offers me £60/week.  No pension, no sick pay, no holidays and if my carees go into hospital or respite care then I lose that £60 too.

My work and friends are in Ireland, my partner is in Ireland, my home is in Ireland but I’m here.  I’m only 34, I want to have kids, I want my life back.  But that will only happen when they die, and then it’ll be too late.

3 in 5 of us will be carers at some point in our lives, and that figure will likely grow as life expectancy exceeds life quality.

I say to all you non-carers who happen to be reading:  enjoy your life whilst you have it, the state will not permit you a life as a carer.In fact, if it could means-test my nostalgia it probably would.

Carer With Attitude says:

If you are altruistic and want look after those you love, and save the NHS and Social Care departments  from having to pay the going hourly rate for paid care (in this case £12 for every daylight hour), should the state really expect you to  give up your life, your career, your future, your family,  as well?

Seems so.

Yet MPs (every single one of whom have failed to help the family carers they all represent)  tell us they are being altruistic to live on that teeny weeny little £67k  they get  as basic salary (plus generous expenses to cover the costs of running an office.. staff..somewhere to live..ok several places to live.. travelling ..silk cushions.. duck houses… moats.. moles…You know how it goes) And they seem to be allowed extraordinary licence in their expenses claims. AND many get seeming immunity from prosecution, censure or  dismissal when they go beyond licence to downright fraud.  

Iain Duncan Smith thinks that  £61 a week Carers Allowance is generous recompense for Outraged’s  altruism and hard work. He also thinks £39 is a reasonable amount for himself to try and claim for a single breakfast* to line his lardy, smug and self-entitled tum.  Think about that for a moment.

I wonder how many years Outraged has spent getting qualified?  WIkipedia points up Duncan Smith’s qualifications as pitifully thin when the truth was told.   Wouldn’t the world run better if  the Ian Duncan Smith  ‘learned on the job’ for a while, as fulltime carer discovering for himself the realities of working round the clock without acknowledgement or comfort whilst trying to survive on £60 a week?  Thus allowing Outraged to fulfil her considerable potential through the career and life she would like to lead?    Answers please!

The next Carers Virtual Strike will be on 21 November 2014.

*his claim was submitted – but, thank goodness, not accepted.

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Carers: was that a Bank HOLIDAY?

Was this a ‘holiday weekend’ for you the family carer, or was it just another couple of  long days like all the others in the year?

Perhaps this Bank Holiday was worse than other days because there was less chance of respite/cover/transport/shopping/medical assistance than at other times? Come on – get real. People have to take a break you know. Unless you are a fulltime family carer!

Hundreds of thousands – millions – of us UK family carers work round the clock for love. In conditions most people do not think possible. Yes, the people whoworry about the state of the world, who talk about sweatshops, who are angered about unpaid interns, who sign petitions and boycott companies to improve third-world working conditions – yet how many of you ever notice the army of unpaid unrecognised workers on your doorstep working every hour in the day for nothing?

If the word ‘holiday’ was a mockery to the day you lived today, sign up to join the Carers Virtual Strike (- here) .

For most people June 21st is  only the longest day. But this June 21st will be different. Because, this year, Britain’s hardest workers will finally go on strike.  A strike with a difference – we Carers will only be withdrawing our labour virtually. And so, unlike a real strike, our loved ones will stay alive and safe and protected.

Of course, we can’t go on real strike – because our loved ones would suffer – but we can demonstrate the real cost of the care we give and the work we do each day – not because we are saints, but because there are no other humane choices

Why are we striking?

You can read our manifesto here – FIVE simple cheap ways to revolutionise Carers’ futures. A plea for some kind of equitable treatment. To be seen as important by virtual  social activists, movers, shakers, insurrectionists, care organisations, government departments, health professionals, charities, political parties, unions.

Because, lets face it, fellow carers. We might as well be invisible.  And if nobody else will support us, the only support we can get is from each other.

Carers – what are you doing on Virtual Strike Day?

Yes, yes, yes, you will be caring. Of course. What else?   But will your soul be on Strike?

Join us!OLDWOMAN

 

Comfort and joy?

What was my best present this Christmas?

Time off.

I love Ms F and she loves me and we get on very well together. (This is just as well, because we spend more time in each others’ company than is usual, healthy – or even sensible – in other circumstances.)  But I’m acutely aware she needs her own life, and I yearn for my own space. Lets face it, both of us need time apart from each other.

This year, for the first Christmas ever, this is what we got. It was golden. It was epic. It might have saved my sanity.

What did I do? Was I blogging?  tweeting?  anywhere near the internet? Like hell I was.  I’ve been out in the big wide world getting the very most out of NOT being a carer.

I went to an exhibition and dawdled over the bits I liked best.  Enjoyed it so much I went back the next day. Stayed in bed half the morning because it was stormy.  Disappeared for a long walk or two. Took photographs. Sat in front of the fire. Curled up with the cat and read seven books.  Listened to music.  Went to a carol concert and dropped in on the pub next door.  Cooked. Talked this shit, that shit, with my elbows on the kitchen table.  Listened to my own thoughts.

Doesn’t sound so very special?  Listen to this:  everything I did, I did on a whim, without planning or booking or finding cover or worrying about the time. I never had to give it up. I was never interrupted and sent flying home for an emergency. I was a free being.

If you can do these things whenever you like, you can have no idea of how wonderful it is to be able to do them at all. These were my first full days without caring responsibilities in twenty-eight months – that’s since August 2011.

I’m beginning to think we can face 2014 after all!