“We are lucky..” The 91 year old carer

A letter from my indomitable friend Sarah, who is a fulltime carer – at 91 – to her 92 year old partner of half a lifetime, is full of cheer and optimism:

The situation here is much the same but with improvement – I can now read to X from ‘The Irish Times,’ ‘New York Review of Books’ and from novels, Parks, Tobin, Ford, Stroud, Sebastian Barry…

I attribute this improvement in X to: being in her own home; routine; kindness of friends, and carers. X is now 92 (I am 91!) – We’ve been together for 46 years. I am chief (of course) carer. I rise at 6.30 am, get myself going (breakfast/shower). At 9am the morning carer comes, sets X’s  breakfast, shower etc. Then I drive us to buy newspaper and to a local beach, hill…. The morning carer is paid for by the Health System (1 3/4 hours). The rest of the day (lunch/dinner) I officiate. We pay a carer to get X to bed. Our carers are very kind and good and competent. We are lucky..

O to to have such posititivity and indomitability. I am overcome with respect and admiration

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May the Ingrate

Today the media’s full of pictures of the Prime Minister of  Britain and her Chancellor laughing heartily at the thought of continuing to freeze the pay of our energency and public service workers. Just to be clear, that’s the very doctors, nurses, firefighters, police and ambulance crews May and her government have relied on so heavily to help them out of the various fine messes their domestic and foreign policy has got them into over the last few weeks.

Actions speak louder than words, don’t they?

You want to look at pictures of these overpaid entitled ingrates look  elsewhere – and if you were one of those who voted for them I hope you are hanging your diminished head in shame.

Instead here’s a picture of a wounded lion from the Assyrian Lion hunt of Ashurbanipal.  Lions were rounded up (or indeed, bred specially), caged, and released in an arena where the king, heavily guarded, and in a chariot,  shot them down to show how brave he was.

This was another day when Ms F and I have been relying on our poor wounded NHS. Somehow the picture seems appropriate.

 

The Magic Money Tree -a MayDUP conceit?

17905234-money-tree-isolatedI was going to write about the PIP assessment I attended last week as MsF’s advocate.

But, after May’s gift (bribe?) yesterday of a billion pounds – can I repeat that –ONE BILLION JOLLY OLD BRITISH QUID-  to bring on board 10 members of the anti-abortion, climate-change-denying DUP with their electoral share of 290,000 yesterday, to prop up ‘the will of the people’ when ‘the people’ unaccountably failed – no! no! no!

So much for that stale old trope of the magic money tree. Seems there was one after all, right?

Excuse the bitterness.

In my 18 unremitting years as unpaid carer for those I love and can’t abandon, I’ve worked so  damn hard, caring 168hweek after 168hweek after month  after month year on year back-to-back and unsupported (and the last few years, caring for 2 separate people). I haven’t had any holiday whatsoever from care in 3 1/2 years. I wake up exhausted.

And I’m not alone. There’s an estimated one million other very very fulltime carers out there, working as hard as I do. That’s a helluva lot of people to disregard.

And people’s response?  “You shouldn’t be so hard on yourself. You need me time. Take a break.”

No shit, Sherlock. No need to victim-blame. We carers don’t want to be hard on ourselves, folks. No, we want as easy a life as anyone else.

But in all the time I’ve been carer you could talk of carers’  needs – you could mention, ask, demand, yell, collapse even- and there was never political will or money to ameliorate the situation for me or the other 1 million Marthas like me. Sleek elected souls who felt entitled to charge the public purse £30 for breakfast, would endlessly mouth the same mantra: No magic money tree.

And now it turns out that if May had needed us carers enough, she could have fished behind the sofa and given the whole million of us £1000 a head, without batting an eyelid. Just like that!

No magic money tree, Mrs May?

You sure as shit found a whole magic money orchard the moment you discovered ‘the will of the people’ had disappeared and you needed to buy a few extra parliamentary votes to prop up your discredited beliefs and party.

Carer in the Community – the reality

I’m angry – as ever – about the unreality of National Carers Week.  It’s the ‘Lets go down with the Titanic – no not me, I’ve a place in a lifeboat, but you – you! Keep on playing a rousing foxtrot on deck to raise our spirits’ attitude of those who are paid reasonable salaries to work 9-5 to ‘support’ unpaid carers. Pictures of stands of smiiling folk showing what good fun it is to support us. Not a lot of pictures of smiling people who have worked gruelling 168 hour weeks for years on end, or the people they care for. Somehow we are less photogenic.
So here is my poem for Carers’ Week ( with an unphotogenic video – performed by someone who has had no respite or holiday from care for over 3 years https://youtu.be/m_W12z_XSkQ)

Recognition: the MOST IMPORTANT THING to give Carers

To ‘celebrate’ Carers’ Week, carers are often asked what is THE MOST IMPORTANT thing that might make their 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 to work that because we are unpaid carers, our time has no value. I still remember the time vital social care appointments were cancelled at 10 and 25 mins notice respectively by a (long replaced) social worker who valued her own time much more than ours! She had a union and had working hours governed by the European Working Time Directive. 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 the idea that 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 know a highly qualified 24/7 woman carer living in a onebedroom flat, unable to leave the person she  looksafter, who  was earning £80,000 a year till a heartbeat changed her life. 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 1.3 million of us provide over 50 hours of care per week- and 6 out of 10 of us are women.  Carers providing high levels of care are twice as likely to be permanently sick or disabled. I have seversal health problems: high blood pressure; inflammatory bowel disease; epilepsy – all developed  within the last ten years. I cost the NHS an arm and a leg.  Half the time I feel as if Dracula had sucked every bit of goodness out of me – and yet I cannot be sick.   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’m 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.

ONE MOST IMPORTANT thing: Many carers can’t sustain the pressures of work and caring. Those who do work often have to earn around unsupported care responsibilities and so earn almost nothing. So we are poor, poor, poor.

And until the big Carers’ charities examine the ethics of paying ‘the market rate’ of over £50k for a charity fundraiser, yet spend their time doing more than supporting carers to claim the miserly £62.70pw  Carers Allowance (that can be claimed only by those earning less than £116 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 out current state.

This gives us less economic resilience to crisis. (OK it has given me NO economic resiliance to crisis. When I have had to take a taxi home from leaving 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 final true recognition. Not the spurious, Carers Week  here today, forgotten next week encouraging the mooing faux support and interest that Carers Week consists of every year.  From those who pretend to care – and who do not really give a damn. 

(This is an update of a post that Carer wrote for Carers Week, 2014. Guess what folks? Nothing has changed!)

The Numbers Game

I say I’m one in a million; my father used to say I was won in a raffle – but  in actual fact I’m 1 in 8 : one of the the seven million adults who have given up  health, wealth, career and life-expectancy to be unpaid carer for an elderly or disabled friend or relative.

With love. Always with love. But not always voluntarily. Often because the was no other option. Statistically, 58% of carers are women, but my experience is that when it comes to working-aged people, it is generally women who draw the short straw.  Well, bless us, what else have we to do? It’s not like we do real work or have a real life or anything.

We’re a growing army of the forgotten and dispossessed. Every single day another 6,000 join our gang. Me, I’ve been gang member for seventeen years. And for the last few years I’ve joined the inner circle and become – not one in a million but one OF the million who cares for more than one person.

Between the two I haven’t had a holiday from caring for well over three years.

SO, what’s all this  to do with the price of fish? All very sad but what can be done etc. ?

Well, number one, in the run-up to the election, all sorts of figures were being bandied about but blow me not this one: We carers are estimated to save the state £132 billion per year (and that doesnt include lost work input and lost tax).

Lets dig deeper:

  • Over 3 million people in the UK juggle care with work.  How the significant demands of caring mean that 1 in 5 carers are forced to give up work altogether.
  • Carer’s Allowance is the main carer’s benefit: £62.70 for a minimum of 35 hours care a week, equivalent to £1.77 per hour – far short of the national minimum wage and £10 a week less than JSA. (And of course you may be working up to 168 hours a week for it). CA is means tested. Earn over £116 a week and it’s gone.
  • Over 1.3 million people provide over 50 hours of care per week- and 6 out of 10 of us are women.  Carers providing high levels of care are twice as likely to be permanently sick or disabled.
  • There is –  unsurprising – a high correlation between being an unpaid carer and poverty. So maybe it is also unsurprising that  its women who have a 50:50 chance of having been an unpaid carer by the time they are in their 50s. (Men have to get to 75 to reach the same statistic)
    (all figs from CarersUK)

The Conservative manifesto made the infamous pledge that you – yes – YOU, the person reading this, the one with a job, wealth, health, a career, a pension and a future – YOU  can give up your work for a year to care unpaid for someone. Not sure what you’ll live on? Wind and running water, like theis pledge was written with?

So this week is CARERS’ WEEK. Who will give up their job unpaid for just one week to spell an unpaid carer?

Don’t all speak at once

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!