support

I’m Back – and still Furious

Did you miss me?

I apologise for my disappearance. Two years ago – just after the Carers Virtual Strike I went to a Carers conference and came out so sunk in despair that I practically threw myself under a bus.

The problem?

The huge divide between the narrative of the carers’ charity that ran the conference and the actuality of my life and those of so many I knew.

Carers have twice the average rate of suicide – and I’m not surprised.

So for my own protection I took a break. But the super ideas of Theresa May and her ilk to improve the lot of carers – latest mad manifesto offer: take a free 12 months unpaid from work to save the state £65,700, why dontcha? – have lured me out from my place of relative rest.

So I’m back. And still furious. Watch this space!

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.

Recognition: the most important thing to give Carers

To ‘celebrate’ Carers’ Week, my local authority wants to know the MOST IMPORTANT thing that might make my life better as a carer. One?  Believe me, there are too many  MOST IMPORTANT things! Here are a handful:

ONE MOST IMPORTANT thing:  An end to the assumption by people who are paid for their work that because you are an unpaid carer, your time has no value. Our last 2 Social Worker appointments were cancelled at 10 and 25 mins notice respectively by a social worker who valued her own time much more than ours! She has a union and has working hours governed by EWTD. No union will represent carers because they work unpaid. And I work 168h every week and have done so with very few exceptions for this entire millennium. No contest!

ONE MOST IMPORTANT thing: An end to being treated as if the 168 hour week you have worked for love is nugatory – that because you were given no pay, sick pay, holiday entitlement, occupational pension entitlement you must be a fool.  I have an Oxford degree,  and was captain of my University challenge team while I was there. I’m bright enough, thank you. That thing you say about peanuts and monkeys?  its a cliché . And only fools believe in clichés. Just saying.

ONE MOST IMPORTANT thing: At last, an understanding of the on-costs and end results of continuing lack of support. Over six weeks I’m taking 973 prescription tablets – and that’s if I don’t need the odd paracetamol or aspirin. I’ll also have to have 4 different sets of blood tests to check whether the more scary of these pills aren’t poisoning me. I have high blood pressure.  I have inflammatory bowel disease, with add-ons. I have epilepsy.  I have developed all of these within the last six years – and I’ve now got further tests planned to see if I haven’t developed a fourth nasty. I cost the NHS an arm and a leg.  I feel as if Dracula had sucked every bit of goodness out of me – and yet I have to keep going.   Why?  I eat healthily. I exercise. I don’t smoke.  I have a happy and cheerful disposition, plenty of friends, a family I am fond of. I am even friendly with my ex.  BUT I am a full-time family carer for my wonderful, clever, funny and kind daughter, and have been since the start of the millennium.Over that time alone I have worked more years of European Working Time Directive weeks than I have been alive. I am exploited by the state as free round-the-clock labour. Something has to give. And there is only one thing that can give – me.

When I collapse (and look at the above) it will cost £130,000 plus to replace me for every year my daughter is alive.

ONE MOST IMPORTANT thing: for 14 years I have had to earn around unsupported care responsibilities and so I earn almost nothing. And as the big Carers charities are happy to pay ‘the market rate’ of over £50k for a fundraiser, yet see nothing inappropriate in spending their time supporting carers to claim the miserly £61pw  carers allowance (that can be claimed only by those earning less than £100 a week and  the oversight of the claiming of which, let’s face it, could easily be done by social worker, dwp, county council, doctors surgery, all sorts of well-qualified bodies )- rather than lobbying for big improvements  in our work-life balance – I can see no way to improve my current state.

This gives me less economic resilience to crisis. OK it gives me NO economic resiliance to crisis. When I have to take a taxi home from MsF in Intensive Care at 3am because I do not drive and there is no other way to get the 8 miles home apart from walk, the £40 it costs represents a crisis to the family.

So – plenty of MOST IMPORTANTs there.

I think if there really is ONE MOST IMPORTANT thing, that ONE MOST IMPORTANT thing would be some final true recognition every day of the year of the constraints and pressures that we carers are under and a real desire to ameliorate our lot.. And not the spurious, Carers Week  here today, forgotten next week encouraging mooing that  Carers Week consists of every year.  Final true recognition. From those who pretend to care – and who do not really give a damn.

Like that’s going to happen.

I’ve said this before. I say it again. Over the last six months I have been tweeting asking for support from  prominent social activists – and not a peep.

High profile  ANGRY people – silence, my dear, silence.

Well-known feminists. We female carers might as well be invisible. (Being a carer is not sexy enough for them to make their column inches, I  guess).

Newspapers, radio, tv – ditto, ditto, ditto.

Care organisations, government departments, health professionals, charities, political parties, unions. Nada, nada, nada, nada, nada.

Lets face it, fellow carers. Apart from a peak of spurious interest in Carers Week we might as well be invisible – and after Carers Week, we will be. For another year. I don’t count that as raising awarenessi n any real sense.

So where do we go from here? HOW can we carers shout and be heard when everyone around us, the whole of society, is playing the three monkeys and not seeing, hearing or speaking out as hard as ever they can? (Or if they choose to speak on our behalf, are very selective in what they say?)

Are we carers only to survive on the awareness of carers?  Unless someone cares enough to support me sensibly I will be one of the number that the state will have to find permanent cover for – a tragedy for me and for my daughter – and a horrible expense to the UK.

At which point – particularly if the circumstances were tragic enough – all the social activists and angry people and well-known feminists and media and care organisations and government departments and health professional organisations, charities, political parties, unions and the whole boiling of proselytisers and talking shops and ‘do as I say, not as I do’ so and sos  blah blah blah will suddenly stop navel-gazing and start talking of  our plight because they will see in our plight something for themselves. 

Pah!

So, please -seeing as its Carers Week – please SHOUT OUT if you care for carers. Try and embarrass this form-over-substance world of virtual activism  that doesn’t care a damn about the little people like you and me into caring for Carers. Not as much as we carers care, obviously. But even a little bit would do..   Get them to say to the world I Care for Carers – (and then ask them what they mean by it! And then see if they won’t put their money where their mouth is..

 

Only a few carers have signed up to the Carers’ Virtual Strike caretostrike.co.uk – a tiny proportion of our dispossessed and demoralised and unrepresented and uncared for whole – but to replace just these few would cost the state over £63 MILLION  a year! And all we are asking for is what this state should thing of providing just to prevent paying out that kind of money long-term: See  Carers Manifesto https://carerwithattitudeuk.wordpress.com/five-simple-ways-to-change-carers-futures/

 

 

OK, it’s a Carers’ manifesto. And why not?

DSCF4087 (631x800)It was pointed out to me today that  in this blog I have, in effect , written a Carers’ Manifesto. So I had a look at it, and – bigod – it is!  It’s a real live Carers’ Manifesto!

(But why not? Its also very sensible.)

There is no way that the state can compensate us carers for the sheer amount of time we  give up voluntarily – nor should you have to. We do it for love, or duty, or common humanity. And often a combination of all three.

But you can prevent our caring duties from wrecking our lives, our careers, our futures and making us an unwilling burden on the state when our caring work is over.  Not as a matter of justice – though it would be just. But to ensure the country designs a robust response to the caring crisis that is coming upon us.

And so I’m making no apology for repeating as Manifesto points, the five demands that we fulltime family carers want.  (No, need.) They are modest, affordable and practical.  And they are not extravagances; they are necessities. Me, I’m still surprised that you (and by that I mean all of you, not just those who run, or used to run the country) should care so little that carers  have done without these necessities for so long.

We are not invisible – nor should we be so inaudible.  It’s up to you to open your eyes and ears.

Proposal One: That we award Carers Allowance to all live-in carers, irrespective of age, income or employmentjust as DLA/PIP is given to those they care for.

Why? This would not only recognise (in part) the range and responsibilities of work carers do, it would mean many carers who can fit in a little work around their caring responsibilities would be able to do so without the fear of losing this support. (And as paid work brings in tax revenue, the state may well find it is compensated for some – maybe a lot – of this outlay.)

Proposal Two: The state pays into an occupational pension scheme for each fulltime carer to reflect what they might expect to have put in if they were working , say, an 80 hours a week at minimum wage. 

Why? This would give end-of-life value to all those years in which carers worked hard full-time (the expression is meant literally) for someone else’s benefit. Pragmatically, it would also be likely save the state pension benefit top-ups to the carer at end of life.

Proposal ThreeEstablish solid practical careers advice and training to help carers train for and sustain appropriate work within their environment (bearing in mind all the work that could be done this way if the will were there: teleworking, local working, working that can be supported around care needs).

Why? This would maintain skills, support a career, restore confidence and provide longterm independence for the carer. This is not just about fairness, though it is. Its about economic commonsense.

Proposal FourTake social housing back from the sem-autonomous situation it now occupies and ENSURE that it recognises the requirements of disability and caring in the allocation of rooms. When doing so the state must alsoENSURE that sufficient appropriate accommodation is purpose-built for the disabilities of the local population.

Why? This would mean that carers are not further worried by the constraints and logistics of, say, caring for tetraplegia in a first floor unmodified flat. If you fail to support the people with disabilities in this way, much of the additional stress is also felt by those who care for them.

Proposal Five: Finally, when allocating money to support carers, the state must ensure that money is ONLY given to organisations that offer properly targeted transport-accessible help that is fit for purpose  to everyone who needs it. It doesn’t seem a big ask  – but look around and see how many organisations do this. Stop regionalising carers or subdividing them into disease-specific tranches.

Why? You may not be intending to divide and rule, but that is what you’re doing. And you end up with organisations that are increasingly remote from the people they exist to support.

Who wins? Everyone!

Carers win, because they don’t feel shafted by fate and apathy and can see that their life prospects are valued and being protected

The cared for person wins. How guilty and how annoyed wouldyou feel to recognise that state policy is ensuring your condition may be assisting in the inexorable decline of your loved one’s life?

The state wins. It puts in an insignificant outlay and targets other resources better. In return it gets a more employable, less dependent population with greater chances of a productive outcome.

Best of all,it avoids the current shocking waste of a large chunk of the human capital of this nation. 

Carers, sign up to the Carers Virtual Strike. Without harming the person you care for, you can make politicians aware of what it actually costs to care. Not a carer? Show solidarity by adding your name to our supporters page and let us know that you care that we’re careworn

Sucks to be you!

ImageSucks to be you,” my eldest daughter used to say. Shorthand for “Boo hoo for you -now go away and stop bothering me, I couldn’t care less.”

It was dreadfully aggravating. As she – in her mid-teens – intended it to be.

Carers get to recognise the grown-up equivalent of “Sucks to be you.” It’s cast at them so frequently by non-carers leading non-caring lives. Lives with free time, social events, holidays, sick days, pampering sessions, disposable income and a ‘lifestyle.’

It’s the response you get from all sorts of people, both friends and family, when you try and express some of the frustration of your situation.

Let me think of a handful:

“Worse things happen at sea,”

“You’ll just have to put up with it,”

“Offer it up,”

“Oh well, what can you do?”

“That’s just the way it is,”

“You can’t change things,

“We’ve all been there.” (My personal bete noir. One smug woman who once said this to me is on my personal never-to-be-forgiven list – and I can carry a grudge, me. Let her beware when she chokes in a public place with noone but me to rely on for the Heimlich Manoeuvre. Things will go hard with her, I can tell you).

O, and last but not least, Silence, and change of subject. This is probably the most hurtful and infuriating of all.

Yes, non-carers are very philosophical indeed about the situation of carers. They can take it on the chin.

But when they have a problem, oh my! You wouldn’t get very far saying any of the above  to the very same person when Farrow & Ball sends the wrong shade of cream or their freezer breaks down or their Caribbean cruise is ‘a nightmare’ or their child doesn’t get the grades they wanted for him.

Do I sound bitter?

I mean to.

 “Can I see another’s woe,
And not be in sorrow too?
Can I see another’s grief,
And not seek for kind relief?” asks William Blake.

Can you? You’re darn tootin right you can. Carers up and down the country can testify to it.

If you’ve had enough of being overlooked, do join the Carers (virtual) Strike and tell the world that we are no different from them.

Stepford Lives

I’m beginning to feel that when feminism did away with the role of Fifties housewife, it just snuck around the back and rebranded itself as Family Carer.

Image

Fifties housewives were not expected to work for money. They depended on the breadwinner instead. And they worked their socks off round the house with a smile on their face, responsible for everything and with power to change nothing but the family breakfast cereal.

You just have to look at the ads. The fifties housewife was clearly not on this earth to enjoy herself but to make life more comfortable for the rest of the family. Crikey, I’ve seen ads where the housewife was responsible for the B.O. that was preventing her husband’s promotion!

Now have a look at  the life of a family carer. You are expected to earn little or nothing. You are expected to live a life of less fun and more work than anybody else you know. You have no time off or time out.  And you’re expected to keep a smile on your face and know your position while everyone else enjoys their important lives doing important things. (And above all, never ever suggest your life is harder and less fun than others’. After all “We’ve all been in the same boat,” as so many non-carers will tell you. Right. Remind me to swap my week, and my income, and my free time, with yours one week. Just sayin).

And then on top of it you are offered support. How to manage that workload, how to cope with the difficulties of your loved one’s condition, how not to crumble, to be more efficient, to be more professional. Tell me, how much of this support is there  to make carers better carers rather than to make life better for carers ?

A plague on such thinking.

Do you want blood out of a stone? You the state are relying on US the carers to be absolutely-extra-spiffing-superly-excellent, selfless, saintly, drudges. How can you want us to be any better?

All your efforts should be to making carers lives more fun and more easy so that you don’t wear us out too soon.

We deserve it.

(Incidentally, it would be nice if we had names. I’m me, I am, not the Magic Help Fairy. I swear one day I will lose it and sock the next health or social work  professional  who scans me casually and says to nurse/colleague/a.n.other “And is this mum?”

I’m offering a crisp crackling FIVER to the person who comes up with the best response!)

Shoulda been a kitteh – what a pitteh!

The RSPCA tells me that there are a million stray cats in the UK.  And I know there are also a million of us full-time, unpaid carers.

Have a think about this for a moment. The two facts should not be mutually exclusive.

Yet when was the last time your Facebook timeline was filled with pictures of suffering family carers? with piteous appeals from charities whose only aim is to make carers’  life better (“Carrie has not slept a full night for ten years. Could you give up a little of your precious time to help her?“)? with exhortations not to forget at this festive season? with appeals for time, funding, volunteers? I’m not really asking you this question. We all know the answer.

Chums – let me tell you, an unpaid family carer may need funding, support, volunteers quite as much as a cat. Maybe – speak it low – more. Have a look around you. One of every 64 people you know  is a 24/7 carer, working up to 168 hours in the week (and there are only 168 hours in the week).  Do you recognise them? They are probably the people you don’t actually see that often, because they can’t leave the person they care for. They are the people who lead a poorer life than yourself, because it is so had to fit career around full-time caring.  They are the people with the bags under their eyes. The ones you  think, briefly, “Gosh, I guess it sucks to be you,” as you drive past them on your way to  book your regular winter holiday. The ones you rather admire because they ‘soldier on,’ because you haven’t thought about what options or support they might have not to soldier on. The ones to who all employment rights are denied.

The ones held to ransom because successive governments found it much easier and cheaper to patronise than to face up to the economic costs of family care.

I fancy making a set of LOLCareh memes.  A picture of my sleepless-for-13-years eyebags (I CAN HAZ RESPITE?) would be a winner. And maybe we could produce a line of “I WUV YOU, CAREH” sweatuhs for Christmas.

Maybe we could start a trend?