I read an article by a carer recently that really struck a chord, the thread to her argument was that while she feels valued and satisfied with many aspects of her life, in her role as a carer she is made to feel like a scrounger. Obviously it got me thinking, and I wondered about my own terms and conditions. I tried to fit my work hours into the Working Time Act 1997, but like any parent I am in breach of so many rules and regulations relating to time off. That's our role as parents we knew that before we took the gig but it's when our kids have extra requirements: special needs and medical problems that we totter into the 'grey' area of being their carer. This 'greyness' is a bureaucratic view and not a parental one.
So, for the sake of argument, lets just look at what a parent of a child with renal failure brings to the table, like any parent in this category I am more than competent at the following duties: I can fully operate a peritoneal dialysis machine, I can give subcutaneous injections of EPO, I can insert nasogastric feeding tubes, I can take blood from a central venous line, I can competently carry out a full set of observations; check blood pressure, temperature, pulse rate. I know my way round beta blockers, calcium inhibitors and vasodilators. I know that Ranitidine - although it shouldn't - sends Boy Wonder's LFTs through the roof, I know that Atrovent - although it shouldn't either - brings him out in a rash. I know that Minoxidil is a drug of last resort because it makes him very agitated and (believe it or not) hairy! I know how to balance his fluids and that any imbalance can affect his Tacrolimus or his Creatinine. But I'm not special, any parent of a paediatric renal patient knows this stuff - we have to!
The more 'soft' skills I have acquired are no less useful but maybe a bit harder to quantify: I know how the system works, I know how to complain and to whom. I know how to negotiate to get a better outcome. I know when my son's sensory integration is off balance and that we need to take action. I know what action to take and if I don't know, I know who does. I could list on but what's the point?
The role is tough but it at least it is in the natural order of things - I am his mum and it is my job to care for him. I take great satisfaction in watching him exceed all expectations, at the ripe old age of nine he is still alive - and for a kid born with no kidneys that is some achievement. But he is not just alive he is really living!
I'm not caring for an elderly relative who may be suffering from dementia - someone with whom I may have had an ambivalent relationship throughout my life. I'm not watching someone deteriorate daily. I'm not locked in a house 24/7 with no Home Help or Respite care. I'm relatively young (don't dash my delusions!) with a modicum of energy but still I am made to feel worthless, like my skills are not of value, like I have nothing to contribute.
I will get over these feelings because I have to and because I refuse to let others make me feel this way. I know that I can't change the system but I can change to way I react to it, however it is getting harder to bounce back. Carers are being subjected to death by a thousand cuts, they are tortured daily by guilt and the grief of their position and now the Government values their work at exactly 20% less than they valued it this time last year.
How is my work valued by society? In terms of classical or even Marxist economics (since we have so-called Labour party in Government), there is a value in the 'use to society' of our labour but how do you quantify the 'real cost' or 'absolute value' of the use we provide to society? We can't be fired and resigning is clearly not an option but what would the impact be on society if we simply didn't exist?
Is it because the people for whom we care are not seen as valuable, revenue-generating entities? Would we get better terms and conditions if the people in our care were High Court Judges or Merchant Bankers still capable of generating value? Since we are paid (badly) by the state do we fall under the terms of The Croke Park Agreement? I can't see the public service unions accepting a 20% cut in allowances coupled with an increase in productivity so why should we?
The question is: what are we going to do about it?