As you know I find the idea of “young carers” pretty awful. That young people should have a caring role thrust upon them at an early age is unreasonable and just not natural. But in my head having to care for an adult is even more difficult than caring for a child ( as children need some amount of care anyway), and should we be pitting one against another, handing out awards and praising our kids for doing things they shouldn’t have to do? After all siblings are expected to help out with a brother or sister aren’t they? So because of all of this I like to refer to my daughter as a “special sibling” rather than a carer and I think what I was seeking through her nomination was a grudging respect that at 11 she’s not a total arse.
My daughter was three when her brother entered this world in a dramatic fashion that would set a precedent for the years to come. She danced about to the delight of doctors and nurses and kept us endlessly amused through some incredibly dark times. As she became older she adopted the role of chief fetcher and carrier, always adaptable to the myriad of relatives and friends called upon to collect her and take her places. She took her teddy bear into school for comfort while her brother was ill in hospital or having operations. She automatically packs a bag of snacks and entertainment as I pack up her brother’s clothes and meds for hospital if he becomes ill.
This is not the life I wanted for her. Not at all. But it’s our life and it’s not the norm.
More recently she has become proactive in how she behaves towards illness and disability writing articles and speaking in front of her peers. Those who know her will admit her voice is a powerful one and I have no doubt she will continue to use this advocating for children with disabilities and their siblings.
But this is not the life I wanted for her. Not at all. But it’s our life and it’s not the norm.
The icky little truth in all of this is that she does help care for her brother whether I want her to or not. She may be ( I suppose) a young carer but I will not have her be an adult carer, as I’ve said before I want a different life for her. We’ve set things in motion with new respite provision that I hope will be the beginnings of our back up plan for if shit goes wrong, if we become ill or die, or you know just can’t do the caring thing any longer. You think superstars burn out? You ain’t seen nothing. Caring is back breaking, nerve destroying, mind fuckery of the highest order. The best comparison I can give you is imagine you’ve done a REALLY long run but before you’ve had a drink and a sit down you meet about ten people who all disagree with you about everything, three phones ring simultaneously and then you realise you should have rang for a prescription days ago but when you try the fucking phone line is permanently engaged. Then everything sets on fire but you just sit there and no one comes to help.
Repeat every day forever until you die, or the person you care for does.
Yes I know that all sounds quite depressing but throughout my blogs I have always aimed for honesty. It might be simply what the state of play is on a certain day at the time I put fingertip to phone, but it remains a truth nonetheless.
It’s not all bad. It’s really not. However the major issues for each and every carer ( after the health needs of the caree) involve money and finding some sort of break from caring, and this situation is only getting worse. These pressures affect the ability to care and it’s false economy to not support carers themselves. Replacing the level of care we provide is a logistical and economic nightmare. It makes far more sense to put in place robust packages of care and support before family provided care breaks down.
#paycarersalivingwage
#everycarerneedsabreak
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