Thursday, August 19, 2010

Unsung, unpaid - unstinting

I'm embarrassingly aware that there's someone I occasionally mention here who gets limited recognition for the major part she plays in my sons care. My wife has looked after him as the main carer for 27 years - I really just do the fetching and carrying and some of the unskilled mucky jobs. (When a nurse lost her new gold bracelet, it was my job to go through the clinical waste bag until the glint of precious metal became visible through a discarded protective glove carefully packed away inside a dirty continence pad - who said caring can't be fun.) Before the kids, my wife was a very well qualified senior nurse and now effectively acts as 'clinical lead' in most of our sons care, though many of the professionals with less time alive than she's had in nursing, still find it either difficult to acknowledge her skill or feel threatened by the depth and breadth of her knowledge. She still organises his drugs, does much of his care herself and takes over completely the shifts they can't cover, etc. etc. etc.. I help out as much as I can but she's the real lynch pin of this operation.

We've been told by medics, in the nicest possible way, that it's her fault he's still around. Before we had the care package, she worked 24/7, sleeping only in patches. I did what I could to help and at least I got to 'escape' to work during the day - she never had that luxury.

And for all this, she gets paid nothing. Now we're both retired (officially) even the pittance of her Carers Allowance has been taken away - it wasn't much but it did recognise what she did. Nothing in the care changed on her 60th birthday, but she was no longer officially valued. It doesn't make us that much poorer financially, but I really resent this - she's massively undervalued as it is. Oh, and we still have to fill in all the DWP forms every month (despite not getting the benefit) in case it affects his 'passporting' to other benefits and the empty lever arch files at headquarters start feeling peckish.

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