Carer 2014? Prepare for a future you didn’t expect

At the turn of the year we think of what has passed and what the coming year may bring.

One thing you might not have thought of – but which isn’t unlikely – is that in 2014 you may become a family carer. It’s more likely to happen if you are a woman, but misfortune is gender- and situation-neutral. Anyone can become a family carer. It’s not really a matter of choice.

Now, you may think that in such a case your emotional energy will be focused on your parent, your child, your partner, on the person who has become so tragically dependent – and it will.  But please, please save some for yourself. Cos sure as shit you won’t get much elsewhere.

Why is this?

Carers are hostages: held in hock to the love we feel for those we care for. And society – yes, that’s you – relies upon this love to save you – still you – money.

Carers are slaves. No joking. Literally a million of us are literally working 168 hour weeks every week for months, years on end, for no pay or prospect of advancement. Suck that up, European Working Time Directive! How does it look to you, unions? After 13 years I am still flabbergasted that you – that’s you, again – should care so little.

Carers are martyrs. Again, no joking. Living without support not only blights our careers and futures and leads to poverty and poor health – it also shortens our lives. So why does media and public outrage focus on the plight of unpaid interns? Go figure.

Carers don’t have fun. This is because carers are different from you, more altruistic. They don’t need holidays, or evenings out, or – anything really. So that’s all right.

Carers are patronised. Would you trade in your career and your salary, your  holidays, your pension, and most of all, your  autonomy – all that lovely free time you don’t realise you have,  for a session of  aromatherapy or a pat on the head or a nice cup of tea?

Carers are silent. If you are exhausted, and poor, and isolated and you spend all your time ensuring someone else’s welfare, you haven’t the energy to shout out.  How very convenient for a society that wants to close its ears.  So as a result..

Carers are dismissed. The movers, the shakers, the media, and society in general haven’t noticed the plight of the one person in ten who is a family carer. We don’t count because we fell off the ladder and we’re not at your boardrooms or in your newsrooms or on your front benches.    –  Oh, you had noticed, had you? You just think it is ok that we live like this?  Because.. (and this is the bottom line..)

…Carers are other people.

Oh  no we’re not!”  Like I said, you could become a carer tomorrow. Or you could need full-time care tomorrow.  That’s the you that’s sitting reading this, casually, and thinking I have a good theoretical point.  As the headstones say:

Remember Man as you go by
As you are now so once was I
As I am now so shall you be
Prepare yourself to follow me

Don’t get me wrong, I do want to appeal to your better nature – especially at this time of year, when we think of the connections between us all, and get a nice warm fuzzy feeling of shared humanity.

But I also want to appeal to your sense of self-preservation. Do everything you can to make carers’ lives more tolerable today, because a carer’s life today may be yours tomorrow.

In part 2, tomorrow – in 2014 –  WHY carers are invisible

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!

Go on – Adopt A Carer

This last week has been a total bugger.  Every time we thought we were facing the worst – something else would come along and hit us in the face. It became almost funny – waking up to news of bad tidings every day.

Almost funny but not quite. In the last 7 days  Ms Fitty lost her place at college for being too ill.  She started new, even more worrying seizures. She continued to have too many bog standard but dangerous seizures. We travelled to  London to hear that she has literally tried every single drug for her condition without success. (So that limits hopes for the future a bit. A lot).  A local hospital  confirmed her shoulder injury will need an operation and she will continue in pain until this is done. But she can’t have an operation until they are guaranteed 3 subsequent seizure-free months. (Which means it will happen on 1st of Never.  Ms Fitty’s not had three fit-free weeks since this whole malarkey started 13 years back. In the last 3 months she has had 27 bad ‘uns.  Oops .. sorry, make that 28, as of now. Her knee injury of 5 years back is still undealt with for similar reasons, so on top of everything else, I have to keep reminding her to put on a caliper.)

This week – as every week – she has needed me to be supporter,  advocate,  carrier, organiser, witness, recorder, medical adviser, emergency nurse, resuscitator, diary, alarm bell, detective, dietician, energiser, personal trainer, lifter-upper, uplifter, adman  and constant companion.  Ms Fitty has her boyfriend, and the wonderful Sheena to come in for emergencies  and I put upon a patchwork of  good friends, but she needs someone with her all the time. And I mean all the time.  Ms F has had frequent seizures in the bath, shower, down the stairs yada yada yada.  Really I can’t do it all on my own.

Last year I finally got respite money and  I’ve been advertising ever since. The trouble is,  I can’t get anyone prepared to help.

In the middle of which I’m trying to work fulltime – largely from home – and manage my own health problems. Not neglect the poor neglected other two. And support my 89 year old mother to continue living  in independence 70 miles away.

How do I do it? Well I don’t watch tv for starters. I sleep very little and I don’t have a social life.  And I take Ms F for  uplifting long country walks to stop myself going mad.

Now I do recognise that however awful things  are, I’m lucky in comparison with the great proportion of the world. My tiny income (we’ve been living well below official poverty level for the entire millennium: career impact  of full time caring on sole carer/lone parent) still puts me in the richest 8% of people in the world. We are lucky to live in the UK. We are lucky to have an NHS. I am personally lucky to have secured a roof over our heads, to be able to afford food and (just about) warmth. We are supported by wonderful doctors  and a few good friends.

But in our last – horribly bumpy –  24 hours  (I won’t bore you with the details of the dramas that make up routine everyday life for Ms F and me) I have most of all been helped by people whose lives are as bad as mine: the kindness of carers. The acquaintance who saw poor Ms F trying to hold me up when I collapsed on a station platform (you couldn’t make it up), and dashed across a bridge and missed her train because she could see we were in need? She’s looking after her 94 year old mother with Alzheimers. The closed Facebook group who clustered round when I poured out my despair? They are parents as badly off in every way as myself. The friend who made me laugh out loud by talking about erotic prints instead of sympathy? We met when our children were longstay patients together.

This Christmas, why not Adopt A Carer?  Spare a thought for the invisible army – the people you see in passing who are coping so positively with parents,  partners, siblings, children who need round-the-clock care and support. Many of us can’t get out or  can’t get out unaccompanied. We are no different from you – tomorrow you may become one of us.  Do as you would be done by. Come round with a bottle. Buy us a coffee. Take us out for half an hour, so we can get our shopping done. Don’t treat us like saints or victims – make us laugh.

That bright smile may well be plastered across an abyss of loneliness and despair.

Ah, love, let us be true
To one another! for the world, which seems
To lie before us like a land of dreams,
So various, so beautiful, so new,
Hath really neither joy, nor love, nor light,
Nor certitude, nor peace, nor help for pain;
And we are here as on a darkling plain
Swept with confused alarms of struggle and flight,
Where ignorant armies clash by night

Carers can’t be ill – there isn’t time

What do carers do when they’re ill?

Ill? Don’t make me laugh. Carers can’t be ill, there isn’t time.

For me, the stress of double-working every hour there is  (yes, folks, work. I can’t sit around in a saintly fashion, smoothing brows and mooing “I caaare“, I have to earn a living, you know. Carers don’t live on air) – this stress kickstarted  a couple of medical nasties of my own.

“How long have you had these symptoms?” the consultant asked me, when he finally diagnosed inflammatory bowel disease.

“Oh, about ten years,” I reply.

“No, I mean, how long have you had these acute symptoms?”

“Oh, about ten years.”

“Why on earth didn’t you do something about it?”

“Er…”

I feel foolish. Its impossible to explain to a non-Carer how invisible a Carer is, even to themselves. The state doesn’t recognise your job, neither do the Unions. To healthcare givers you are generally the nuisance who challenges their pronouncements. For me, ten years of pain was merely a background to the horrors of Ms Fitty’s adolescence, when she spent several years at death’s door – and I at the doors of A&E.  I put pain was put aside for a more convenient time. 

Another grim aspect of our grim lives.

But I digress

Many other carers around the country are  minimising their own health problems. How ironic, when they are brought on by relentless hours and lack of any support.  Use us up and spit us out – and then wonder where the funds are to pay for the £187,000 yearly cost  to replace all that we’ve done freely and with love, why dontcha?

O, and think of this, next time you fancy a sick-pay-funded  duvet day because ‘modern life is so stressful!’ (sorry, that was BILE speaking)

So today I am feeling truly terrible. I’ve a slowly subsiding Crohns flare, and my innards hurt. The disease is being blasted with heavy duty steroids, and these have ensured I have slept no more than 3 hours a night for the last 3 weeks. The extreme lack of sleep is interfering with my temporal lobe epilepsy (another consequence of relentless, unsupported caring) and I see flashing lights every time I  move my head.

In short I feel shite.

Ms F is on her last ever day of college (see Groundhog Day. They wanted her to leave on the spot, last week, like a bad dog – but she held out for coming in today. She pointed out that everyone was bringing in cakes today, and she didn’t want to miss out. Fairly typical that in their haste to get rid of her they had not thought of her as a person at all who would like to finish a term like anyone else) . I might have some hours without interruption, just to lie and be ill.  Ones where every silence doesn’t suggest suffocation, every crash the possibility of broken tooth or bone, and where  every conversation isn’t tempered by the confusion of a thousand hidden absences.

But – these are my last free hours for a while and I have so much to do.   I lose a full 12 hours of tomorrow because Ms F and I have to travel  to the National Hospital, and Thursday is looking like a day from hell onthe work front.  If I work now, I save myself more trouble later. Unless I make myself so ill,  that I  cause myself more trouble later.

And I’m pretty certain I  can’t trust myself on a bicycle.

Choices, choices..

Between the devil and the deep blue sea once again..

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?

Groundhog day: excluded for being ‘too ill.’ Again

So on Monday  they catch me. I’m ringing up Ms Fitty’s college with my work hat on but they grab me and tell me to swop headgear sharpish. They need to see me as soon as possible.

There’s a special tone that educationalists put in their voice when they’re fixing up a meeting to divest themselves of my Ms Fitty. I’ve heard it several times before..

We’ve already seen off  ‘She’s depressed‘ – which was last month’s  salvo aimed at her continuing education.  Ms Fitty’s not depressed. She’s pretty unhappy to be 21 and still have the college ringing up mum, and to be getting iller, and to be taking medication which isn’t working as it should, and having seizures on the bus and in the bath, and still toiling over level 2 qualifications  while her friends and siblings are scattered round the world finding themselves.

“Unhappy,” as we told the college “is not the same as depressed. Unhappy is only being aware your life is not as it should be” And, far from being unhappy,  she loves being at college.  Loved.

“We really need to see you on Tuesday.”

“Its going to be difficult,” I whine.  13 years of solitary round-the-clock wakefulness and worry, of filling forms, and lifting and reviving small bodies, and bluelighting to A&E, of chasing prescriptions while earning a living by  meeting deadlines at hospital bedsides has not done a lot for my health. In the last 2 years I’ve had two chronic and incurable diseases diagnosed and I’m spending all Tuesday morning in hospital having multiple x-rays. That’s for the Crohns. To add to my difficulties the other diagnosed condition is epilepsy,  which means I can only get to the college by bicycle. Seven miles of country roads, in the dark, with a belly full of barium.  Who’d be a carer, eh?

Of course,  I do arrive,  and when I do arrive, it is to a meeting with the most senior members of the administration. Who tell us that  they can’t continue educating my Ms F. Frankly, on this occasion, I can’t really deny the problem.  Nothing remains in her head. Information oozes out like overripe Camembert. Poor poor Ms Fitty. Her sister has a law degree, her little brother is  at school in Shandong province – and she is having to leave her college because  she can’t remember how to log on to a computer. Yet Ms Fitty is a sentient intelligent 21 year old  and – although the uncontrolled nature of her epilepsy means she may need an advocate on occasion- this doesn’t mean she is not quite as clear about her current situation as anyone else.

They should be talking to her, not to me.

But they won’t. They utter consoling sweet nothings and tell her they wish the other students worked as hard as she does. And they offer deliberately unspecific hopes for the future. Reading between the big black lines it looks as if they don’t expect to be seeing her back again.

I’m not going to argue. I see their point. And when it comes to making people teach her when they don’t want to.. well my experience is,  that legislation or no legislation,  it just doesn’t happen.

So we will have to go and get her pills sorted out at the London specialist hospital. Again. And try again. Again.  Over the years I think she’s taken 18 or 19 different varieties of anti-epileptic, singly and in combinations. She has attended five separate institutions in the past 5 years. And we may now be at the end of the line for both.  O I can’t tell you how desperately I will fight for this not to be the case.

Miss Fitty is like a zombie much of the time and she hates being a zombie. And its pretty hard caring for a zombie too. We’ve seen her through five unproductive drugs changes this year in vain. But if they could manage to get it right.. If only..

Its not the despair that kills me, its the hope.

The tragedy of the family carer