Carers’
Rights Day doesn’t stop being important for me now that I’m an ex carer.
Here
I am typing in my pyjamas at 8pm, knowing that there’s no reason to have to
rush out again to Nick, or to feel guilty that I am just tootling around at
home rather than spending time with him. Increasingly I couldn’t bear to think
of him alone, not just in case he was lonely but because of the very real array
of possible danger – from choking, falling, being given the wrong medication or
reacting badly to the right one, to malicious damage by the nutter upstairs –
all things that could and already had happened without me there to protect him.
Nick
had become as helpless as a small child, relying entirely on help from me,
Simon and the council carers just to be able to get out of bed and sit in his
chair to watch TV.
I
don’t have to worry about these things any more. The constant worrying about
him and is he safe, the fretting about the carers who could never bloody turn
up on time or be relied on to get the right meds dosage or lock the door behind
them, let alone wipe down his table or give him the food I’d carefully cooked,
pureed and left labelled in the fridge. The endless onslaught of bills and
benefit reassessments and constant breakages, never knowing what was going to
go wrong next. The laboured text at 11pm, “Sis,
I have broken my television / bed / chair…”, the sudden call from the alarm
service, the completely unexpected rush to A&E.
Life
is still unpredictable but I don’t have to carry these worries like a giant
constant weight round my shoulders any more.
Since
Nick died, I’ve learned to relax into an expansiveness that I couldn’t even
imagine a few months ago because it didn’t seem possible, at least the only way
it would be possible would be this, if he was gone, and my brain couldn’t
compute that.
Carers
live two lives all day and every day, managing the needs of another person as
well as their own. That means nurse, cook, dietician, chauffeur and travel
agent, housekeeper, stockbroker, medical specialist, virtual assistant, advocate,
benefits expert, launderer, scribe, punchbag, ongoing lifeline and all-purpose
trouble-shooter when things go wrong. And it means developing a rhino thick
hide that will not be dented by the sling and arrows of outrageous fortune as
you battle intransigent bureaucracy and talk-to-the-hand jobsworths, because
carers soon find out that another giant chunk of their time is taken up
fighting for what you might think would be the basic rights of a vulnerable
person who can’t speak up for themselves.
I
don’t want to sound chippy because in theory we still have a welfare state that
looks after the frail and disabled. But navigating your way through that takes
some strength, and carers get used to having to talk to the hand again and
again and again until the message gets through, for the sake of the person
they’re looking after.
Becoming
a carer for someone you love can happen so quickly that you hardly know what’s
hit you, and it can happen to anyone. It’s the hardest thing I have ever done.
Then
of course there is the navigation through all the bureaucratic knots and
tangles when that person dies, especially if it was unexpected. I’m still
wading through that but as an executor of the estate of the deceased, no longer
“Carer”.
What
am I, though? Being an ex carer is odd; I’m still getting used to it. The new
freedom is a gorgeous thing but it’s unfamiliar too and I am sorry to say that
there are very few resources for someone who suddenly stops being a carer.
No
P45. No gold watch for faithful service. No rehabilitation. No bereavement
network, no employment support, no steady ground under your feet. Carers’
Allowance mercifully continues for 8 weeks after someone dies but everything
else stops dead too and that’s that.
Some
people have known nothing else but their caring role; how are they supposed to
find their way in a world that barely recognised them while they were actively
being a carer, let alone now? When the financial constrictions of caring, which
have STILL not been addressed by any politician I’ve come across from any
party, leave most carers unable to save even if they can work alongside their
role, while what savings they might have had are drained by the constant
erosion of buying disability equipment and specialist goods and all the other
seemingly small things that add up to a lot.
I’ve
been bailing Nick out for the last ten years in dribs and drabs and it adds up
to a lot. It was the price of love.
This
has happened to me the year I turn 60 - too young to retire but with no foothold
back into the ‘real’ world, I’m still blinking in the sunlight like a newly
released prisoner who doesn’t know what to do.
Yes,
I’m worried about the future and I need an income but if caring has taught me
anything it’s to be resourceful.
And
angry, if you want to know. Why are unpaid carers still not properly recognised
for the work they do and the contribution they make to our economy, the
billions they save the state? The current Carers’ Allowance is a mockery as it doesn’t
align with the new Living Wage and no-one at HMRC seems to have done their sums
about this, or give a toss.
Why have we not heard a single politician standing
up for carers as they present their election promises? Why is there no support
for former carers who are presumably expected to fit neatly back into a world for
maybe years has pretended they don’t exist?
On
Carers’ Rights Day this year, I’m not a carer any more but I still think like
one. And we deserve better. Please, don't think that because it doesn't affect you it doesn't matter. Sooner or later most of us will need care or be carers. Don't turn a blind eye now.
You can join the We Care campaign (@WeAreCarers) with a click of a mouse, you can vote for a politician who cares about social care, and yes, you can share this message.
Thank you.
