Month: February 2014

Hope is the thing with feathers..

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words –
And never stops – at all        Emily Dickinson

I love these words and today I’m clinging to them particularly fervently. Because, dear readers, today I’m feeling a little hope-less.

Hope-WattsI shouldn’t be – today’s been pretty good. Sun shone blue. Council sent me back a sizeable chunk of overpaid tax, hurrah. Cleared out junk room and made it a respite carer bedroom. (And because I am fortunate in misfortune I didn’t even have to worry about the bedroom tax while so doing) Lucky lucky me.

All’s for the best in this best of all possible worlds, yes?


Poor MsFitty continues in a bad way. Its not the seizures, more the mental confusion and strange pathways her brain is taking. And she’s not exactly seizure-free – she’s had six or seven corkers over the week and spent 9 hours in hospital when she was supposed to be on a birthday treat. I could weep..

And then I’m beleaguered by the many, many things that need to be done, that have to be done, that she wants to be done, and that she cannot do alone.

I’m helping her catch at the coat-tails of the education she still wants – and which our local authority is finding disgracefully impossible to supply.

I’m trying to track down the missing care promised by the health authority which vanished like some ethereal flower wasting its bloom upon the desert air.

I’m trying to help MsF manage to balance her interim meds (four separate scary drugs to hold things in place until she goes back to hospital as inpatient). 25mg too low and she fits for England; 25mg higher and she’s a zombie – only aware that she hates not being aware. Vile balancing act!

(Oh, and I’m tracking down the tertiary hospital appointment, come to that.)

I’m working out when I need to be away and finding and booking cover.. Lucky among carers to have found (poorly paid) work that can be done while caring for someone as un-leavable as  MsF, I find working around the clock while caring around the clock leaves one all limp and floppy and isn’t good for the health.

My own epilepsy has required a recent change of meds – until they kick in, the sunlight slaps me in the face and knocks me down like a playground bully. Just as well I don’t drive.But in this car-centred world it makes a lot of things still harder.

And while this is going on my light bright, bubbly, enchanting daughter is become lumpen and apathetic – weighed down with chemicals and errant brain impulses. It would break the heart of a wheelbarrow.

And so many things make me angry. An MP claims £1600 for curtains for his second home. A DJ pretends he’s a used car dealer to save paying £1m tax. A twinkletoed footballer is worth £300,000 a week.

And a family carer is STILL worth nothing  unless they earn under £100 a week, In which case they get £59 carers’ allowance.

Priorities in this country stink to high heaven.

So folks, I need to cling to that thing with feathers because blind hope is the only help available.

Family carers are going on – virtual – strike in June. Please sign up to support us. Actions speak louder than words – but for carers, words are all we have. We can’t withdraw our labour without endangering those we love! Give us some hope, please


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

Value for money – carers versus bankers

ImageToday we heard that Barclays staff bonuses (er “incentive awards”) amounted to £2.38 billion this year. That’s right. I’ll spell it out: £2,380,000,000. That’s a helluva lot of noughts.

We are told that these kind of sums are a necessary addition to the bankers’ very generous salaries because – y’know – y’all just gotta pay competitive rates in order to get the best ..yada yada yada.


No. Wait! I’m going with this one – aren’t you, fellow carers?

The bankers tell us that if you pay peanuts you get monkeys.

And if you pay monkeys what carers get, you get starving monkeys.

Now, I feel that my daughter deserves the very best of care round the clock. How can she get it from a carer who is paid £0 per hour? Surely she would get increasingly better care if her carer were paid £10, £100 or £1000 an hour?

1.4m UK carers are working around the clock, 7 days a week. That’s 168 hours a week.  And if you want to replace a single one, at agency rates (£15 per hour – to the agency, that is, not to the paid carer they often exploit), it would cost £131,400 for a year.

A lot of money? Yet you could pay for 36,225 family carers to work half-time – a mere 84 hour week – and do something to realise their own potential  for the very same sum that Barclays is bestowing on the arrogant ignorant greedy separatists they employ. On TOP of their pay, sick pay, holiday pay, expenses and pension pot.

Crikey, that bonus pot would even pay a lifgechanging Citizens Wage to 76,450 totally unpaid carers. Just sayin’.

Are you honestly going to tell me these bankers are doing a better – or more worthwhile – job? Last time I heard, no carer has ever been near to  bringing down western capitalism.

Sign up to our Carers Virtual Strike and show the cost of care (Not a carer yourself?  sign our new supporters’ page  – and show us that you care that we are careworn!)

Tell politicians the real cost of care!


Why a Carers’ (virtual) strike? Because we’re WORTH it. And you need to know it. And we  want to prove  it.

 As well as counting the cost, each signature sends the following email to Ian Duncan Smith:

 Letter to IDS print

Please join us to tell politicians the real cost of care

Not a carer yourself? Do please sign up on our new supporters’ page – and show that you care we are 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.