Every Easter, without fail, we hear the same message from pulpit and political soapbox – “we need collectively to make sacrifices to make good and redeem and repair the suffering of others.” Try telling that to the hundreds of thousands of people like myself, so profoundly disabled we need external and eternal help from carers 24/7. And dare try telling that to this nation’s hidden army of carers, many if not most left to fend on zero hours contracts and pay levels on or just a little above the National Minimum Wage.
And underlying that, the awkward truth that many we elect to represent us in parliament or in town halls, or those precious individuals selected to be our generation of commentators or – gawd help us – “influencers” – are utterly bereft of knowledge of how social care works and no idea of what’s in the minds of those giving care and those in receipt of it. So, as an effective paraplegic, here are some insights from my sub-conscious.
Firstly, dependency is a most frightfully crappy and sometimes frightening thing. You don’t grasp how much so until the people you rely on to get you out of bed, wash and dress you and feed you every day can’t be there because of a ’emergency’ somewhere else in the residential block I live in – at which point you stare very hard at the wall, try to suppress the mounting, irrational anxiety and terror, and have to simply talk sternly to yourself. You know that there are issues in the system, but only via a crackly pendant voicecall system (and there are issues here too, and which I want to come back on to at another time). Then when your carers arrive – and invariably chirpy and cheerful they always are – the other aspect of block booked care given out in 15 minutes to an hour duration; the fact that my wants to be fulfilled list (simple things like personal care, a change of bedding or the like) need to be spelt out in a form that seems to dehumanise what should be a human interaction to a assembly line – but then, just having space to talk, tell jokes or gossip don’t fit into the time management systems of the often wealthy private equity funded care providing companies, or the commissioning strategies of cash-strapped local council adult service departments.
“It could be worse”
It could be worse for us both; for me, I recognise how lucky I am to be in a residential supported living environment that at least means I’m not reduced to the charity of others in the family. In my case, being at the end of an attenuated withered arm of what was once a large extended Co Mayo emigrant family ensured I have no living relatives who the state would assume would provide my care. I contrast my life to that of a guy I knew from a community near to mine who similarly lost the use of his lower body and ended up shadowing me from the Neuro Ward to the convalescent hospital. Fate determined that this man, ex-army and a bus driver, was to be consigned to the care of his wife to become his de facto unpaid carer. Granted, she was a strong woman in every sense; you had to be to survive as a bar worker in one of our ‘livelier’ local pubs. On that basis he was discharged earlier than me, but how they have both fared with this new life for both of them over the past four years is debatable at best, as he, like me, is, without the aid of hoists, a sack of spuds with a brain and arms.
“Fixing social care”?
Simply put, politicians can prate about “fixing” social care, but we are to them subjects on spreadsheets, units of cost and an amorphous mass; no time to dive into the nuances of differing needs for those hovering on the cusp of dementia, for those with lifelong learning difficulties or neurological disorder; no knowledge of the special needs of the black and Asian community of elders and ignorant by and large of the work / life pressures of employed care staff – how many MP’s have a partner, or a son or a daughter wearing a blue tabard in a residential home? Very few indeed I expect.
Recruitment and retention of carers
And slowly, remorselessly and inexorably, the crisis for the recruitment – and more importantly – the retention of care staff deepens. I know one private residential home owner working for the community he was born into and still lives in who tells me he fears the news of the opening of a new edge of town superstore, offering better pay than he can offer, and providing jobs that don’t come with edgy, often confused and fractious clients and a total absence of catheters and bedpans.
It seems to be that looking at the web it’s easier to find local cyber-currency advisors than for someone to put an elderly woman’s leggings on. Carers are in critically short supply, to the extent that some councils have said they can’t guarantee a service at present levels and clients will be more and more diverted by hospital administrators and overworked social work teams into reliance by often unwilling family members.
Anyhow back to the beginning. My carers have arrived, having dealt with someone (I know not who and wouldn’t ask) who had been touch and go for a blue light dash to the local A&E unit, and for whom my own piffling anxieties are but a peccadillo. My terror (helped by my daily SSRI pills) has abated; I’m slowly again muddling through the coming day, one day at a time, and with it, my conviction grows ever stronger that my – our -carers should be trained, respected and recompensed on a par with the emergency services. The Times’s Melanie Griffiths once said (and she’s a A1 tetraplegic, well above me in the needs scale):
“No robot can replace the human hand. Physical dependency always means a tiny margin between crisis and normality. You balance on a knife-edge, always reliant on a chain of events not under your control.”