UKIP and Carers – the 10%

Carers: we can't see you, can't hear you - so we won't recognise your existence or speak on your behalf

So 1 in 10 Brits voted UKIP last week?  Seems like the media can’t stop drivelling on about it. And people can’t stop drivelling about the media coverage.

Yet – amidst all the tumult and the shouting – here is one fact the media have missed reporting . As they have, consistently, for years and years and years.

There’s another one in 10 people in the UK who nobody mentions – the one in 10 who are unpaid family carers. On  duty – responsible for someone’s life –  many for the full 168 hours a week, week in, week out.  It is quite as dreadful as it sounds. You have difficulty with everything: working, sleeping, socialising, existing.  Paying bills. Getting out.  You don’t tend to get luxuries like bank holidays. And, no, you don’t get used to it.

Successive governments have failed to support us.

Yes – we carers could really have done with some of the publicity for our situation that the media and the media circus  are giving to Mr Farage and his cohort. Some of the sheer amount of time  that  so many people online and on air, in blogs and Twitterland  have  spent on iterating and reiterating the bleeding obvious, safe in their cosy, cushioned, unstressed citadels of  outrage -insulated from any but theoretical emotions on any topic. 

Think about this for one moment, eh?

And then recognise why I -and all those like me – am so angry

 

Carers – sign up to the Carers Virtual Strike- and show the true cost of our care: visit Caretostrike.co.uk 

#Justsaying

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

 

Shout out if YOU care for carers!

Carers: we can't see you, can't hear you - so we won't recognise your existence or speak on your behalf

I came back from the pharmacy today with a mega bag of pills. You wouldn’t believe it, but in the next six weeks I’ve got to take 973 prescription tablets – and that’s if I don’t need the odd paracetamol or aspirin. I’ll also have to have 3 different sets of blood tests to check whether the more scary of these pills aren’t poisoning me. Erk.

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..

Why?

I eat healthily. I walk, I swim, I cycle every week. I don’t smoke. I drink alcohol, but not to excess.  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 Ms Fitty, and have been since the start of the millennium. Which means that over that time alone I have worked more years of European Working Time Directive weeks than I have been alive.

In term of other carers’ lives, it’s not unduly onerous. I have other work which I’ve been able to fit around it. I have 14hours respite a week. MsF is mobile, thoughtful and cheerful – we get on pretty well for a mother and daughter. But I am permanently scared and it takes it out of me. And she is scared, and it takes it out of her – and me too.  Six years ago I was a different person, healthwise. Run ragged as a lone parent and sole carer, but fit as a fiddle. Finally, it has all caught up with me..

Ms F has taken to choking and stopping breathing, generally in her sleep. If I hear a strange noise, day or night , I run to her and pummel her back and she stops choking and starts breathing. But do I hear her every time? I don’t think so.  Imagine never, ever, waking up without wondering whether your child might be dead?I wonder that , every morning that I wake.  She does horrible things like having seizures in the bath (you are 16 to 18 times more likely to die in the bath if you have epilepsy – but she adores a bath so we make accommodation). She will drop down the stairs at a moment’s notice. I am pretty certain that one thing worse than having horrible intractable epilepsy is having horrible intractable epilepsy, and being quadraplegic. Her short term memory isn’t good. She microwaved a pie in a metal case for 4 minutes top whack today, before I stopped her. For one reason and another, she can never, ever be left alone.

Basically MsF has a choice of a safe life wrapped in cotton wool  or the life she would rather lead – and the stress of supporting the latter is very hard.

So, who cares for carers?

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. We might as well be invisible

So where do we go from here?

HOW can we shout and be heard when everyone around us, the whole of society, is playing the three monkeys as hard as ever they can?

Are we carers only to survive on the kindness of carers?

Only 469 carers have signed up to the Carers’ VIrtual Strike to date – 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 £61.6 MILLION  a year!

And 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 MsFitty – 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 blah blah blah will suddenly stop navel gazing and start talking of  our plight because they will see in our plight something for themselves.  Leeches!

So, carers, 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. Not as much as we care, obviously. But even a little bit would do..   Get them to say to the world #ICareforCarers – (and then ask them what they mean by it!)

I’m a Carer: hear me roar

A wounded lioness shows her teeth in the Assyrian Lion hunt (British Museum)

Do carers not count as ‘real people’ unless they turn out to have teeth? 

Yesterday I blogged about the horrifyingly dispossessed situation of us family carers (see Let down. Again. Have we really nothing better to do than wait?). How -not entitled to pay, holiday, pension, or any usual worker benefits -we’re clearly not even entitled to respect for our time and our independent lives from Social Care departments. Even though though comparatively well-paid social care departments are wholly reliant on us family carers working our  168hour weeks for nothing.

What you don’t pay for you don’t value, eh?

(The meeting, incidentally,  would provide huge benefit to MsF and me and cost the Social Care department not a penny. So, cynically, it’s no biggie for the social worker if she can’t be bothered to turn up, is it? Its only we who suffer the consequences! )

When I wrote about this incident I mentioned that I had a ‘secret weapon’: my identity when I am not Ms F’s mother and fulltime carer. And this identity was a piece of very unwelcome news to the department in question.

Late yesterday afternoon  I returned home to a third call from the person covering for the absent manager of the absent social worker who had let us down. Poor woman, what a short straw to have drawn.

I made it very clear that whilst any apology to me and MsF was welcome, I wasn’t going to accept the excuse of ‘miscommunication.’ It takes more than miscommunication to cancel consecutive meetings at such short notice -especially when you still manage to find the time to get a third party to do the cancelling for you. It takes disinclination, discourtesy and sheer bloody disinterest in your client.

I pointed out it was one thing to behave like this to  MsF because Ms F was supported by me, and I am articulate and forceful and still have teeth. And even then, I am a woman who has worked over 58 years of European Working Time Directive weeks in the 14 calendar years since the Millennium.Let’s face it, I’m actually pretty close to being on my knees.

So then, what about all the other carers in just my situation- and there are thousands– who have not got my gift of the gab? Not my instinctive reaction of rage? Who are that one step further – finally on their knees, beaten down, and in desperate need of help and support?  Who will help them ?

Surely the primary objective of any social worker should be to fulfil their employment compact with the vulnerable and disadvantaged people they are employed to help? The more dispossessed and beaten down and vulnerable we carers are, the more we need to view the social worker – at the very least – as being ‘on our side.’?

Would you say folks that this is generally the case? Not  this time

Carers – sign up to the Carers Virtual Strike on 21 June. Show everyone – social workers, as well as bankers – that family carers MATTER . Yes, folks, we really matter, in the real world, and our time is quite as important as yours..

Sadly, not every lion can cope with the slings and arrows of outrageous fortune forever..

Sadly, not every lion can cope with the slings and arrows of outrageous fortune forever..

Let down. Again. Have we NOTHING better to do than wait?

Hope-WattsRemember nearly 4 weeks ago when  an urgent re-assessment of MsF by Health and Social Care was cancelled at 27 minutes notice? (read  Carer With Attitude: “Not bitch!” A woman of no importance!)

It has taken the Social Worker this long to find another time she could agree, even though I gave a list of times we could make ourselves available as long as my arm. (I would believe more in this delay if she hadn’t cancelled our last meeting because of a ‘prior appointment’ – but I caught her in her office at the very moment she was due at ours.)

We thought briefly that we had arranged an appointment for 2 weeks back but she rang up shortly afterward saying “I’ve just discovered I have a hospital appointment – so of course that won’t do.”  Not like anyone else’s hospital appointment, clearly.

Anyway,  for three weeks –  THREE full weeks -the date has been fixed for today, Monday 19th May 2014 at 10.00 am. I have the letter in front of me, dated 30 April, confirming it.

I was just tweeting the fact at 9.45 when  – guess what – the phone went!

Yes, that’s right. We’re sitting here, poor helpless, hapless, flaccid, unimportant people of no importance. We have nothing better to do

CANCELLED. Again. This time with 15mins notice!

There’s really no need to take that tone, I’m only passing on a message,” said the disembodied voice at the other end of the phone huffily. Like that matters to me. To Ms F.

Isn’t it the department on the phone?  WHO is taking responsibility for this appalling discourtesy, I demand?

The social worker’s boss. But she’s off sick too. Can I have your name?

Here I pull my secret weapon out – for, dear readers, I have one – and the tone changes dramatically. This makes me even crosser than ever.

WHY should ANY secret weapon be necessary for a public servant to fulfil their employment compact with the vulnerable and disadvantaged people they are employed to help?

Here is  a S-H-R-I-E-K on behalf of Mrs F, on behalf of myself, on behalf of all these millions of disempowered, unimportant carers who are clearly seen as worth no more than to be treated as invisible people by disrespectful workers who are very keen on exacting respect for themselves and their working lives.

Tell me, if we were paid more than 0p per hour, if our time had any meaning, would they behave to us like this?

As I said last time – the vocabulary of public services is stuffed with ideas of ‘respect’ for ‘service users’.  But when will they realise that they get judged by their actions rather than their words?  And cancelling a three-times cancelled appointment  without backup  minutes before it was due to take place says loudly and clearly that your client (the young woman with epilepsy) has obviously nothing better to do with her time, and her mother (the carer) is doing it all for free so what does she count for anyway? Its not like they  were  going to be going anywhere, is it?

Yes, I am sure that working life as a social worker is stressful, I am sure she may have been ill, I am sure she feels overworked. But she is dealing with a woman (me) who has worked  nearly 60 years of EWTD weeks since the millennium – a lot more more than my entire calendar age, for goodness sakes, unpaid.  A woman who finds it difficult ever to be ill and ‘off work’. A woman with two chronic and dangerous diseases brought on by over-work, who is now being investigated for a third. I’m not missing any appointments, this end. I’m not taking any days off work. And if ever I am too ill to care for MsF I have to find someone else to do so. Surely the Social Worker could have made the same arrangement at her end? Its not rocket science.

It is precisely because  family carers are not paid and therefore not valued, that a comparatively well-paid social worker is able judge her own relative importance  on what she sees as purely financial grounds and behave with disrespect to what she sees as the impotence of those she is employed to look after!

Join the Carers Virtual Strike on 21 June. Show everyone – social workers, as well as bankers – that family carers MATTER . Yes, they really matter, in the real world..

Oh, and a copy of this blog is going to the Social Worker in question. And her boss. And her boss’s boss too

Carefree Carer: the happiness of walking

Carer and cared for - joyfully walking off seizures and laying down sunshine memories under a clear blue sky

Springtime reflections. Carer and cared for – joyfully walking off seizures and laying down sunshine memories under a clear blue sky

If I could be grateful for one thing about having epilepsy, it would be that it makes me feel so much simple joy, so acutely. More, possibly, than other people seem to feel.

And for me, the joy of outdoors is paramount.  I absolutely love being outside. I love walking, I love cycling. I love gardening and picking fruit. I love looking for birds and beasts and beetles . I even love swimming in the sea, cold and gritty and sploshy as it is on the East coast of England. And I can’t help noticing that the more I exercise outside the better I feel.

MsF is the same. Often a floppy, passive, pallid, ictal blinking creature under artificial light, she revives, like  wilting flowers in a bowl of water, if given the support of exercise in fresh air. She is bright eyed, she is pink cheeked, she strides, she talks, she  notices things in a way she often doesn’t at home.

The Great Outdoors – the undiscovered anti-epileptic?

Some days – particularly the dark days when she spends hours tiptoeing along the edge of seizure and can’t get off – we have the stark choice of sitting at home, or braving the possibility of problems and getting out. We always plump for the latter- and it has never – ever- ever- been a wrong call. Whether it was snow or sun, storm or shower.

Some of this is – I’m sure – due to the light-sensitive nature of her (our) epilepsy. MsF is always better outside rather than inside, whatever the weather.

Some of it is due to endorphins and what I might call the Fotherington-tomas therapy (Hello clouds, hello sky!).

Some of it’s due to simple delight.

In many ways MSF (and I) have been unlucky. However we are also very very lucky: we are able to walk, we know we can walk, we’re not afraid to walk, and we love to walk.  Not that walking is as easy as it sounds for MsF. She is damaged by all these years of uncontrolled seizures: one leg, arm and shoulder are in fairly permanent pain and need braces and slings. She often has additional bruising to joints and spine.  She may walk with a limp. She may hobble. She may have to adjust a caliper periodically, or bite her lip when climbing a stile. But she is dauntless

She is, I think, lucky to have a carer who supports her to be so active despite these problems. Many people look at the MsF’s of this world and tell them to sit down safely, so they will not be hurt . It’s a big temptation for a carer.. But it’s not what MsF wants for herself. She often tells me she is glad I enable her to ‘have a life.’

And I, as her carer, am immeasurably lucky to look after someone who is not prevented from activity by the level of their disability, nor by disinclination or grumpiness.

Cribb’d, cabin’d and confin’d

O it can be an enclosing, diminishing, desperately claustrophobic business living with a disability . Or as a fulltime carer.

I realise that my life is made golden by a mixture of great good fortune – and the generous spirit  and lack of horizons that MsF places around herself – that allows us to enjoy so fully the glories of an English springtime.

One day at a time.

 

Carer Fatigue – It’s different for me (but it’s still hard)

Today’s guest blog is from Rob G (@Simplicitly on Twitter) –  fulltime carer for his wife who has Secondary Progressive MS

 It takes time to care, it takes energy to care, it takes time and energy to make up for the time and energy you’ve exerted caring. This is often nothing compared to the energy the person you cares for has to exert, and the pain and privations they have to go through while you’re caring for them

It takes time to care, it takes energy to care, it takes time and energy to make up for the time and energy you’ve exerted caring. This is often nothing compared to the energy the person you cares for has to exert, and the pain and privations they have to go through while you’re caring for them

A lot of stories about family carers are of people who have been dropped unexpectedly into frightening and difficult circumstances. Becoming a carer can really can happen to anyone. In a situation like mine it’s only natural to feel a sense of relief that you don’t have to deal with some of the problems that other people do. This feeling doesn’t go away just because you have more problems than some other people do.

How is it different for me?

chose to become a carer. When I met my wife, she’d been diagnosed with Relapsing-Remitting MS for a couple of years. (It has since progressed to Secondary Progressive MS). She sat me down with an A5 red binder containing lots of information about the possible courses of the disease. MS doesn’t have an established pathology that applies to everyone who has it. It just does its own thing, on an individual basis. Nevertheless, there was a lot of information about the different forms. Relapsing-Remitting MS (where you get worse and can get better) can change to Secondary Progressive’ MS (where you have periods where you get worse and others where you plateau). It also detailed how MS can also be ‘Primary Progressive’, where you get worse, and carry on getting worse as a general rule, without as much opportunity for much stability or improvement in your condition. I should point out that none of what I just said is set in stone, it really can be different for anyone who has it.

So, I was ostensibly given the chance to walk away from a life as a carer. If you can put aside your feelings for someone, and place some of your own needs ahead of theirs, there’s a choice for people as lucky as I was to be given one. I understand why anyone would make this choice. However, even now, when my carer role excludes me from being reliable enough to have time to have a ‘proper job’, I wouldn’t have it any other way.

That doesn’t mean I don’t need help.

As anyone who is a carer will know, the last person you look after is yourself. It’s not about being some kind of selfless superhero, it’s pretty tedious personal prioritising. The roles you end up doing are too important for you to balance your own needs against them. Academic hierarchies of need are thrown out of the window when you’ve got to clean stuff up and sort stuff out and care. It takes time to care, it takes energy to care, it takes time and energy to make up for the time and energy you’ve exerted caring. This is, however,  often nothing compared to the energy the person you cares for has to exert, and the pain and privations they have to go through while you’re caring for them, so it’s easy, perhaps even natural to put yourself second.

It also doesn’t mean I won’t keep complaining. Carers are dealt a doubly bad hand. We don’t want the compassion that should be reserved for the people we’re caring for, we just want to not be taken for granted. However we’ve arrived at our roles as carers, or more accurately, our jobs as carers, we’ve all got the ability to walk away. The £119 billion pounds that we save the economy every year – the value of the entire welfare budget, doubled – isn’t our priority. But if you keep pushing further local government cuts and welfare reforms upon us, at some point we’ll break. And the cost of breaking us will be higher than any non-carer can recognise!

I chose to be a carer, I chose this life, but I’m no less bound to it than the people who have been thrust into it unsuspectingly. 

Carers have to fight for every bit of  the help they get. There are charities and a care minister and a duty for local services to help carers, but in the face of continuing political apathy on our behalf and indistinct ‘cuts’ to local services cutting closest to services for adult and child social care, it’s getting worse for carers, and the people they look after, not better.

That’s before we even consider the NHS, and what has happened to the Better Care Fund.

Does what Rob says  chime with you? Sign up to the Carers Virtual Strike and show the world the true cost of care!