I am a member of a very exclusive club, but one you would never wish to join. And anyway, you can't unless you have been given the code - the genetic code. Membership of this club is handed down from family to family and pre-selected before you are born. Huntington's Disease: a progressive, degenerative and incurable illness that destroys whole families as it passes from parent to child. I thought it would be me who inherited it from our mum - instead it was my brother.
Showing posts with label Recognition. Show all posts
Showing posts with label Recognition. Show all posts
Friday
Let Love Rule
It's Carers' Rights Day today and I'm looking back over the past year and what I've learned.
Last year was characterised by panic and emergency. This year we've had our share of emergencies and I've often been overwhelmed, exhausted and frightened, but the hyperventilating midnight panics have worn off and I'm learning to surf the crazy waves like a zen surfer. Patrick Swayze in Point Break, that's me. On a good day, at least.
I've been thinking again about love.
As my panic and desperation to make everything all right recede, there is more room for the simplicity of love.
The love is always there, but lately I'm feeling less resentment, less guilt, and more compassion for Nick, and for myself.
Finding it easier to be present - just hanging out in the room together, spending time. As I get older the concept of "spending" time is interesting and I want to spend it wisely, luxuriously and not let it run through my fingers. Spending time with someone who has a progressive illness makes this particularly apt.
It is really really important to have time out for yourself too, to come back to yourself and re charge your batteries. Loving can't half take it out of you.
Exercise. Humour. Sleep. Friends. Pets. Music. Films, a fabulous book you can escape into, any kind of parallel universe that takes you somewhere else for a while - all these things give you perspective. And nature. Nature is the thing that saves me. And art.
As carers we're all surfing those crazy waves all the time while making it look easy; it's amazing to think how strong and skilled we must be.
What keeps you going when you're looking after someone? And how are you going to celebrate yourself on Carers' Rights Day 2018?
https://www.carersuk.org/
https://carers.org/
Tuesday
Biting the hand that feeds, Baby.
I really, really, really need new glasses. If you are as short sighted as me, these don't come cheap, and this has brought on feelings of panic and mutiny, because as a carer, I seem to fall between the cracks for help with the costs.
So let us get this straight.
So let us get this straight.
I
am on Carers’ Allowance, which is nearly £10 a week less than JSA,
Universal Credit or whatever is currently being rolled out, as they say, in
your area. Yet JSA would qualify me for free or heavily discounted optical and dental treatment, and Carers' Allowance does not.
To qualify for Carers’ Allowance in the first place you need to be actively caring for someone for 35 hours or more a week, which considerably more time than someone on JSA is expected to spend looking for work.
To qualify for Carers’ Allowance in the first place you need to be actively caring for someone for 35 hours or more a week, which considerably more time than someone on JSA is expected to spend looking for work.
True, no
sanctions or interviews or mandatory job experience at Poundland for me, or
having to prove what I have done every minute of the day to seek gainful employment; although
try asking most carers to account for each hour they have spent and everything
they have done in a typical week of caring and if they had to log all that to
qualify for their weekly payment you would probably break the internet. The
whole system would explode! And who at the DWP would have time to read it?
In
order to be eligible for Carers’ Allowance in the first place, my income had to
be under the limit of £116 a week (now £120) for the two months before
applying.
It was a relief in a way to drop some hours as the combination of the
four-day week I’d been doing with the sudden addition of 35 hours (at a low
estimate) of unexpected brother care, was a killer.
I was waking up panicking
and fighting for breath from the sheer shock of it all. I had become a bona
fide carer almost overnight, but could not be officially recognised as such until I stopped earning money.
It
felt like a real catch 22 to have to agree to be poorer in order to continue
doing a new job that I’d not applied for or expected to be doing with such a high level of
responsibility, with no training, and essentially unpaid apart from this
small stipend.
But
I was glad to have it too, even while the catch 22 was staring me in the
face. If I was going to be doing
35 + hours a week looking after Nick, I might as well get some kind of
acknowledgment and regular payment for it, even if I then couldn’t continue to
do my job the way I had been or get paid a decent wage.
The absolute maximum you can earn as a carer doing 35+ hours of support, plus working
part-time, is £185 a week. Bear in mind that the average weekly wage is £520. According to Paul Lewis the financial broadcaster,
when you take into account all the hours worked by the average carer, this is
not even approaching minimum wage, with no legal access to earning more.
I
understand why you’d need to put a limit on hours worked in addition to your
caring role but why the earnings cap? Why can’t you work for sixteen hours at a
good rate?
Unless you’re very lucky with your employer, doing such a relatively small number of hours tends to mean working at minimum wage and even zero contracts.
Unless you’re very lucky with your employer, doing such a relatively small number of hours tends to mean working at minimum wage and even zero contracts.
Why
force carers, who are saving the government and NHS approximately £60 billion a
year, into badly paid work? It seems particularly cruel.
Why
can’t we work smarter for a limited number of hours at a good job
that would help support us, the person we care for and our families, and help
us from being a burden on the state?
A
limit of hours worked AND on earnings is fundamentally a poverty cap and
suggests that where this legislation is involved, carers are held in contempt.
I
was never a high earner apart from (ironically) a short stint doing research at
the DWP, and I’m used to living in a fairly low-impact, resourceful style, and
have always felt abundant in other ways.
But these days as a carer I realise I’m earning below the official poverty level and I bet I’m not alone.
But these days as a carer I realise I’m earning below the official poverty level and I bet I’m not alone.
According to a recent interview with Caroline Dinenage, Minister of State for Health and Social Care, there is "no more financial help available" for carers. The government pot is too stretched.
OK. But why, if carers are condemned to a low income not commensurate with the amount of work they do, are we not at least given help with the costs of dental treatment and glasses?
Seriously, baby. I can’t be the only carer who is short sighted with astigmatism and English teeth.
OK. But why, if carers are condemned to a low income not commensurate with the amount of work they do, are we not at least given help with the costs of dental treatment and glasses?
Seriously, baby. I can’t be the only carer who is short sighted with astigmatism and English teeth.
I
am allowed a free eye test, yippee, but I could equally have one of those if I
pick up the right coupon from the supermarket. And yes, I know there is a low income voucher scheme if you apply to the NHS through form HSC1, but it still feels insulting to make carers jump through yet another sodding hoop to fill in yet another form and justify their existence.
I
mean real help towards the things that actually matter – eyesight, teeth – that can cost a chunk of your money if
you are not deemed exempted. Carers need to keep well, and most of us need to drive, (and to be able to see to fill in those endless sodding forms) and eyes and teeth need maintenance especially for the high percentage of older carers.
Why can’t that be
acknowledged with some practical support?
And
as for a massage or some physio for my permanently aching back from lugging a
wheelchair in and out of the car and a thousand other little daily
tribulations, tell me that other carers don’t long for these and I won’t believe
you.
We need to stand up for our rights.
We need to stand up for our rights.
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