O JOY! Getting TWO lives back

dancing

MY heart is like a singing bird
    Whose nest is in a water’d shoot;
My heart is like an apple-tree
    Whose boughs are bent with thick-set fruit

Today this Carer is blissfully happy.  Why? Today I heard for certain-sure that Ms Fitty has got her education back. More, she is going to be able to continue her education at a specialist residential college for students with epilepsy.

It’s like a dream come true.

Ms F’s future has changed overnight. Potential? This is her chance to achieve it! Independence? Ditto! Future? she’ll have one! Peer group? Check! Social life? Check! Everything she’s ever wistfully watched her friends enjoying is, at last, within her own reach.  No more sitting on the side watching. Ms F, a modern-day Pinocchio, has suddenly got the chance to become a Real Girl.

Its tear-jerkingly happy-making.

This didn’t happen by accident. After the system meltdown mentioned elsewhere, we were lucky enough to get Ms F’s old social  worker back: a wonderful, calm, kindly, smiling, unflappable woman who tweaked invisible strings and quietly restored order from the anarchy we had fallen into.

And so supported,  Ms F and I went to visit the college  – and Ms F liked the college and the college liked Ms F and offered her a place. Dependent on us getting the funding. (This, mark you, in the last week of the summer term, with 8 candidates chasing 5 places)  I persuaded Ms F’s Health, Social Care and Education representatives to meet Ms F and me round our dining room table to try and get them to understand the sheer despair of our Groundhog Days. And they did.  And then I nagged, and blagged, and wheedled, and pestered all summer and today I head that all funding commitments had been made. In writing. Technically college starts on Tuesday!

Talk about going up to the wire.

So now – as I said – Ms Fitty is suddenly  projected into a world with a future, slightly scared, excited, delighted, knuckles whited. And I,  who have  cared around the clock with so very little time off for so very long – I will suddenly become a Real Person too.

The college is  residential and there are 38 weeks of term-time a year. For the next two years I will be the kind of person who can just go out to a film, or decide to attend a class, or write a novel or if someone asks if I fancy a trip to Barcelona or a cycle across the country or even a drink in a pub, can just say yes.  And if I am ill, I can be ill with all my heart and soul and not have to get up and worry about caring for anyone but myself. Reader, I  will be just like you!

Lets face it, I’m slightly scared, excited, delighted, knuckles whited myself.

A day in, a day out: conjoined lives

Yesterday MsF was far from well, and so it was impossible for us to go anywhere. And I mean anywhere at all. We couldn’t leave the house. I have epilepsy and can’t drive. MsF wasn’t mobile by foot or bike. As she cannot be left alone, we were stuck at home as if with superglue.

No-one called  – not even the postie.

We were out of butter, bread and eggs. The nearest shop’s only a ten-minute walk away but it might as well have been in the next county. Luckily the milk is delivered, there was plenty of tea, coffee and cereal and we made dinner from the range of store-cupboard and freezer ingredients I have on hand for just such days. I’d call them emergencies but our emergencies are much worse than that.

I worked but poor MsF was very blue. Thank heaven for the wind-up cabinet gramophone.

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Yes, we have plenty of kind and helpful friends and yes, we could have called on them. But just imagine what it’s like to be the person who calls out for help over and over again. You need to save your friends’ help for emergencies, not waste it on inconveniences. And, you know, it IS vaguely shaming to be so dependent.(Other carers will know what I mean.)

Luckily MsF was better today . Bar the drop that sent her falling back like a felled tree in the hallway. But as she missed walls and glass and hardly hit her head at all, we both reckoned she got off pretty lightly. So we walzed out of the house, through the fog, and onto the bus.

School’s out.

In town I got my hair cut, several weeks too late. MsF bought a fancy red polo-neck, and failed to find some wellies. I bought a scratchy 78 record with people whistling. We had a coffee in an old oakbeamed coffee shop. And we came home on the bus.

Hard for anyone who doesn’t have a disabling condition or fulltime caring responsibilities to understand our delight at getting outside, whatever the weather. Hard to understand how two 21st century people could have so much fun from so little incident. Hard for anyone – disabled or otherwise – to be as genuinely nice as MsF is at being accompanied all the time by her mother.

We’re like a pair of mismatched conjoined twins.

MsF has 14 hours of direct payments for care a week. That’s 14 out of 168. We can’t afford to waste it on just getting away from each other. We save it for her nights out,  for cover when I need to work away from home, or am in hospital myself.

Readers who are not fulltime carers, look around you and thank your lucky stars for all that free time you have – which you probably don’t notice you have or appreciate whilst you’re having it.

For many people its like gold dust.