There is a universe of difference between caring and just "minding".
Give Us A Break
Who cares for the carers? Who gives us a break?
Let the movers move and the shakers shake
Till the system works for everyone's sake.
He’s always ‘my darling’, make no mistake,
But I bite my nails and tear out my hair,
Don't wait for the break-down – give me a break.
Five hundred thousand in Scotland awake
knowing they’re the ones who have to be there
to hold up the ceiling, for everyone's sake –
Sharing the load brings change in its wake.
Since humans are human and sainthood is rare,
Accept my reality – give us a break.
Respond to the pleas that all of us make
With phone calls, appointments, petitions and prayer,
Then stick to your promise for everyone's sake.
We’re asking for funding that's fair and not fake,
For time to recover, to rest and repair,
We’re unpaid carers – give us a break,
And do the right thing for everyone's sake.
© 2007 Elspeth Murray
For Shared Care Scotland’s conference Breaking Through April 26th 2007 . I spoke to EM at Shared Care's Roadshow conference in Perth in October and she kindly gave her permission to reprint her poems for carers.
Carers Brickbats
Reading Mr Man's wife's blog got me thinking. I also have family who could, but who don't. If they can't look after Mum for a day, they could take the kids out for a break. But they don't.
Over the last year or so, I have given a couple of talks about caring - and in thinking about my own family, I realised that inheritances are to be shared equally but responsibilities are not. And as dementia progresses and your mind disintegrates, so does the network of friends and family around you who variously can't help or won't help. So we are left to rely on state provided care. I have one or two fantastic helpers, who feel bad when they can't help me with Mum because she won't let them. So they look around for something to do, anything, that will lighten my load. They're brilliant and I love them to bits. But there are also some horrors out there.
Without being libellous, but in the spirit of having a bit of fun, I would like to invite any carers out there, to post their disaster stories about carers who have come in to care and who are worse than useless!! Who are the real Slack Alices?!
Carers' Bouquets
And just to balance the books, I'll do another post in a week or so to talk about the people who do make a difference. I would love to hear about your Honorary Sunbeams - people who are always there to do what they can to make your life easier. Our CPN, Gill B is an HS. So too is the GP, Dr. E. Mary and Evelyn (whom I pay privately out of the last vestiges of my earnings!) are soulmates and so is young Jayne from Crossroads.
5 comments:
Hi Tilly what an apt poem, unfortunately respite remains an elusive commodity to us Carers!
Let's hope things change soon!
maz x
Hi Maz
Wouldn't it be great if respite were on prescription?!!
On a positive note, I was surprised at the types of places that were prepared to offer respite packages in Scotland (check out Osbis when it launches). There was one place that was quite beautiful with lots of assisted activities - not at all the washed-out sort of place that I associated with respite.
It wouldn't work for us, but I hope it might work for another Carer.
My Mum needs respite care in situ but no-one so far, offers any sort of grant to help pay for that. And the agencies listed by our LA are more the "minder" kinds ie. will come and sit and drink tea and chat but can't cope with much more than that....
One thing's for sure: if we don't speak out, nothing will change. And looks like you're doing a great job Maz!
Hope you have a great Christmas - and that it's not too stressful.
Tx
Hi Tilly, yes if we all do our wee bit I"m sure things will change for the better, let's hope it's sooner rather than later eh!
maz x
Here's a disaster story for you...
I have a son, Colm, with severe learning difficulties and Aspergers syndrome. He's just recently moved into a new home and seems to be quite happy. But some years ago when he was a teenager and living at home, Social Services managed to allocate some respite care for him and I quickly arranged a family holiday. Colm visited his imminent temporary "home" several times before we left on holiday to the South of France (leaving my mobile number in case of emergency), and all looked good.
Three weeks later, I went to pick Colm up from his respite carer. I found a quite heavily sedated son! His temporary carer had sedated him (with her GP's and Social Services acquiescence) because she couldn't cope with his behaviour - particularly his forceful sexual advances. She had been affectionate to Colm, she told us, because he seemed sad. But he became sexually aroused and made several advances to her. She became scared and chemical intervention for Colm was sought and received.
Why did no-one ring me? Didn't want to interrupt my family holiday.
Colm was traumatised and became very scared of any strangers who talked to him. Particularly women. He then told me HIS story. The lady doing the respite carer
had a son who went to a boarding school. While Colm was there, this lad came home for a holiday. He didn't get on with Colm and constantly upset him. Colm sought refuge from the respite carer, but she had a dilemma - who should get her attention, Colm or her son? Nepotism won.
So what about the sexual advances? At that time Colm had never exhibited ANY sign of sexual awakening. STILL hasn't! The advances simply never happened!
Colm still remembers his last respite care. In vivid detail. In his dreams and in nightmares.
************************
I hope you have a good Christmas and I hope that 2008 will be an enjoyable year. Best wishes!
Robert - Thank you for troubling to write. I was so touched to read your story, and that of your son. What makes a "carer" are qualities that are so special and so rare - yet the term is banded around by the "professionals" who call us the "informal" carers...In my experience, there are "minders" and only very few make it to carers. And it is a mistake commonly made, that those who are being cared for, cannot reliably communicate what is happening to them, when we are not there. They can. When you love someone as you love your son, the communication lines are always open, one way or another.
Respite should have been a happy experience for your son, and a restful and re-energising break for you - yet it has left you all traumatised. And I'm sure that that ubiquitous Mr Nobody is the only one accountable.
I hope your son's new found home is truly happy for him, and that he is surrounded by people who will help to mend some of the hurt from past experiences. And I wish you all a very happy Christmas and the very best that 2008 can bring.
Tillyx
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