Apparently 40% of us with a caring responsibility....
by carolm_12582 01st February 2012
…don’t identify ourselves as carers in our first year of caring. Why might that be? I’d guess that either we don’t realise we are carers, we don’t want to be labelled as carers, or we think it won’t make any difference to us or anyone else.
I certainly didn’t. I was utterly determined to recapture as much of our life before Andy’s stroke as we could, particularly being husband and wife. As opposed to patient and nurse. I remember one moment in Andy’s time in rehab where I was being shown what was involved in helping him shower and shave and so on….,’of course you’ll be doing x,y,z, for him’, they said. And what did I say, with not so much as a chip on my shoulder but an entire row of Harry Ramsdens,, ‘I’m his wife, not his nurse!’ They must have loved me! To my credit, what I was aiming to do was to genuinely help him with these things, as opposed to doing it for him: I did, and it worked, in that the first time it took about forty minutes; the second thirty, and, guess what, now he does it on his own.
The next complication….Andy didn’t want to be labelled disabled – so why would he want a carer?? So that labelling thing applies to the cared-for as well as the carer. How could you have one without the other?
I genuinely didn’t think it would make any difference to anything from a practical perspective, not least because I thought every source of help would be means-tested and therefore we wouldn’t get anything. How wrong could I be? When I did eventually get to the end of my tether, after the best part of four years struggling and thinking I was going mad, I discovered there was plenty of help. Or at least enough to stop me from slipping over the edge. And you didn’t always have to pay. And sometimes you could pay and get what you wanted – this might sound a bit dubious, but by being in the position where you have to pay, at least you can be pretty certain you’re only going to get the things you want and which you think are worth the money. Hard though it might seem to believe, at the beginning it actually made things worse to have a little money.
And by adopting that ‘carer’ label, I’m now also able to help influence things to get us a better deal. I’m involved in carer awareness training with our local Carers Centre, so I get to tell it like it is to all sorts of groups, from GPs to MPs! That’s helped me feel a lot less isolated and given me back a place in the outside world where I have a purpose beyond the daily tasks of caring.
So how about you? When did you recognise you’re a carer? What changed as a result?? Did it help?
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Comments
I knew I was a Carer very
I knew I was a Carer very early on, as what I was expected to do for my severely disabled Mum (post stroke) was more than I ever had imagined I would do. I was providing 24/7 care with my husband and meeting her total needs including moving an handling.In hospital, whole teams of staff were coming on and off shift to do what we did alone!
A care worker at the local day centre told me about Carers National Association (it was over 20 years ago - before Carers UK) and when I received my first Carer magazine I wept the whole way through it. Just to know I wasn't alone was a stunning revelation. After 20 years now, despite all the fine words from various governments, we are still caring, now for my mother in law. Carers are still being dumped on leaving us to provide unacceptably high levels of care,and treating us as third rate citizens despite our rights. We are left with poor incomes and little financial stability for the future when we are in need of support.
Very few people in the NHS recognise or respect our role and in fact the care "industry" has even high-jacked our title when "care -worker" or "care assistant" serves them very well.This has led to confusion and I would suggest, the confusion leads Carers to think that the title means all the professionals workers - and not us. No wonder we remain Ignored and Invisible.
I recognised myself as a
I recognised myself as a carer after 13 years when I gave up work to be with mum, although even now that I'm getting up at night to assist her I still feel like a bit of a fraud compared with many people on here. I suspect I started calling myself a carer because I was no longer anything else.
We don't get any free help here, apart from the coffee mornings that are organised every month or so. I enjoy them very much. Our ruddy council used to offer a bit of residential respite care at a cost equivalent to Attendance Allowance but they're chamging the rules and it will soon cost £470 a week. They say they assess Mum not me, which is true, but is it fair to sting her like that for my benefit? The new tarriff comes in in April; My daughter gets married in Scotland in May!
Great post - really captured
Great post - really captured what I've observed for years as a Carer Support Worker - that the word 'carer' can often be the problem that prevents people seeking support and help until the situation is getting out of hand. Hopefully your post will help start a wider conversation. I've put a few thoughts in our blog - please have a look :)
Thank you! It seems to have
Thank you! It seems to have started quite a conversation already, which is great, and maybe people will get some practical support as a result.
Found this post superbly
Found this post superbly articulated my experience in supporting carers. I felt inspired to reflect on what you said for our blog. It is impassioned carers like yourself that can help shift attitudes - look forward to future posts!
http://cmhcsws.wordpress.com/2012/02/04/40-of-carers-dont-recognise-that...
The following message is from
The following message is from Michelle Mary Hawkins via Facebook:
Social services told me.... felt better than the label of failed mum, child no school, no friends, fed up, don't fit it, no one carers! i can almost laugh but not quite still hurts, my son was 8 then and we'd been through quite a difficult time that is still obviously got some way to heal. G-d bless x
PS: when i found out i was 'one' that was when i found out about you! and i found a place that understood me and everything i'd experienced. perhaps today i can say 'thanks'
Thanks you so much for that.
Thanks you so much for that. It certainly rings true for me. However, for us the problem was that no-one told us help was available, and so as we cared for our son during the five years before his death, we coped pretty much on our own, until literally the last 8 hours. Then he was given 24/7 help, but too late. We just assumed that we had to cope on our own.
So true. Nobody is tasked
So true. Nobody is tasked with telling carers what help they can get. The powers that be expect you to know. Mind you, even when you do know you don't get the help you need. I'd love to have regular respite care, say three and a half hours a week to go to the gym and have a coffee. I've said so in my carers assessment and it's available - at £16 an hour! It would cost more than my carer's allowance.
There's been some very
There's been some very interesting conversation on this on our Twitter page (@CarersTweets). I shared your blog post and question there about the "carer" label. Just pasting some of the comments below, feel free to share your response back and I can tweet back to them:
dragonmisery:
It was someone else who told me I was a carer - hadn't occurred to me before; was just doing what came naturally.
janematthews:
Adopting #carer label hlpd me make mental shift from trying to cope alone & criticising myself 4 failing
jverbe
it helps to know & i knew very young, but i wouldn't like to be defined by it. i worry some carers feel limited to the role.
If only I knew how to find
If only I knew how to find them!! I just signed up to twitter and can't crack it at all....found the original tweet but not any of the conversation.
:) try searching for their
:) try searching for their names on Twitter...and when you find them and go through their profile, you might find these tweets on their respective pages. Twitter does I believe remove tweets after a week or 10 days, so you could just start a conversation with them and refer to the link of this blog to remind them of their comments.
Hope this helps!:)
Fiza
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