Covid has thrust thousands of people into caring roles. They deserve our support | Coronavirus

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“Love is not love which alters when it alteration finds”. Those words came back to me this week while watching TV presenter Kate Garraway’s affecting documentary about her husband, Derek Draper, who got Covid-19 so badly last March that he has been in hospital ever since. The ITV film followed Garraway and their two children as they tried to work out how much of the father and husband they knew might eventually come back to them. But perhaps more importantly, it also pulled off the rare feat of hauling the whole unglamorous business of caring – wheelchair ramps and hospital-grade beds and awkward conversations about the changed dynamics of one’s marriage and all – into the light.

Garraway had been told early on that her husband, who spent months in a medically induced coma after suffering multiple organ failure, had probably suffered significant cognitive damage. The unspoken possibility hanging in the air was that he might be altered almost beyond recognition from the man she married, an ebullient former Labour party special adviser who retrained as a psychotherapist. One friend had told her that nobody would blame her if they split up, given that this wasn’t what she had signed up for. The very idea seemed to horrify Garraway, who came across less as stoical or dutiful than as simply very much in love. Perhaps they could learn to fall for each other all over again in a different way, she said hopefully, if he was a different person now.

Yet the most striking thing about the film was its ultimate willingness to embrace the messy and the unresolved. Normally so glossy and groomed on camera, Garraway let herself be shot barefaced and exhausted amid scenes of domestic chaos, spilling out feelings that are normally swept under the carpet. And in doing so, she forced a primetime audience to confront things most of us squeamishly avoid thinking about most of the time. Would you cope as well, in the circumstances? And if not, who or what would be there to break your fall?

Not everyone will emerge from this pandemic the same person they were before it, an awkward truth routinely overlooked in the endless arguments about whether we’ll all just want to go back to normal post-Covid, or whether the old normal is no longer good enough. We’ve all seen the heartwarming videos of patients being applauded off the intensive care wards by nurses delighted at their recovery, but life-saving medicine cannot always give you back exactly the life you once had.

One in five people who survived being hospitalised with Covid-19 emerged with a new disability, and the majority still weren’t fully recovered five months later, according to a new study led by the National Institute for Health Research. Tellingly, a third were either no longer working or had changed their way of working for health reasons – hardly surprising when common after-effects ranged from physical weakness and chronic exhaustion to problems with concentrating, problem-solving and remembering things. Bear in mind that nearly half a million people have so far been hospitalised with Covid-19, and the very long potential tail of this pandemic becomes clear.

That’s without counting sufferers of what has become known as long Covid, which can leave people with lingering symptoms for months even after mild infections: anything from a lost sense of smell to heart palpitations, memory problems and hearing loss. Long Covid is increasingly seen in Whitehall as a crude umbrella term for what may well turn out to be a whole cluster of different conditions jumbled together, and the hope is that most will turn out to be temporary or treatable. But some long-haulers are unlikely to return to their old jobs for some time, and the welfare net has yet to catch up with the consequences.

It’s hard to claim sickness benefits, or negotiate time off with an employer, for a new and poorly understood syndrome whose diagnosis still isn’t clear and whose prognosis remains a mystery. Who can say how long you might be off, or what you will need when you return?

In February, the government’s Sage advisory committee warned that long Covid cases and medical complications in people who had been seriously ill with the virus were between them “likely to cause significant challenges for individuals and for the health and social care system in the coming years”. It’s likely that thousands of families and workplaces will need to “alter when they alteration find” as we come out of this. And not everyone will have Garraway’s impressive reserves, emotional or financial, to draw on.

Every year, countless Britons undergo the kind of seismic shift in circumstances – a life-changing injury, a sudden illness descending, a baby born with some rare, hitherto unsuspected condition – that turns their world upside down, even if it ultimately has a happy ending. Everyone loves a miracle story about a child born so prematurely nobody thought they would live, or a terrible car crash survived. But the often more complicated tales of what happened next remain largely untold.

In real life, the majority of ICU survivors suffer from some after-effects, no matter what they were originally admitted for, and near-death experiences leave their mark physically and mentally. Relationships can and do buckle under the strain, both emotional and financial, of providing care or mourning a once-imagined future that now seems beyond reach. Research suggests that parents of disabled children are at greater risk of divorce or separation. A third of people who suffered brain injuries reported that relationships had broken down under the strain, and almost half reported a collapse in relations with their employer, according to the charity Headway.

It’s never been easy to become either a carer, or a cared-for person, overnight, and anyone doing it through a pandemic that kicked away all the usual supporting props will probably have found it doubly hard. Respite care went out of the window, day centres closed, and some families frightened of the infection risks involved in letting outside care workers into the home will have soldiered on without their normal help. But while we all know now how tough the pandemic has been on parents struggling with childcare, the impact on other forms of care within the family has unfolded more or less behind closed doors. A certain public reluctance to think or talk about long-term illness, which for too long has enabled politicians to get away with neglecting the consequences of it, lingers on.

Boris Johnson signalled this week that his long-trailed plans for social care reforms – the ones that were supposedly all drawn up and ready to go when he got elected, back in December 2019 – might now finally surface in this May’s Queen’s speech. But the inevitable ensuing public debate can’t just be about how we all pay for nursing homes in our old age, however vexed that question has become. There has to be a proper safety net for those who end up caring much earlier on in life too, and provision for the permanent scars Covid-19 will leave on some families. Garraway was brave enough to start a candid conversation about a subject that is all too often hurriedly glossed over. Let’s not end it there.

Hafta Ichi
Source: The Guardian
Keyword: Covid has thrust thousands of people into caring roles. They deserve our support | Coronavirus

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