I have learned from my own experience that caring for dying relatives in our society is almost impossible
Caring during Covid-19 has been a strange experience, but not in the way you might think. When the pandemic hit in early 2020, my mother had been sick with cancer for two years. I was leading almost a double life: at work, I inhabited the “normal” world, where conversations about annual leave quotas or inbox management mattered; outside office hours, my only concerns were preventing fevers, dispensing accurate milligrams of medication and searching for the right words to convince her that her suffering had a purpose.
At first, being a carer seemed alien, as if one morning I’d accidentally woken in someone else’s identity. Then, as the months passed, I could no longer remember what life was like before her illness and the relentless daily grind it engendered. Caring for someone terminally ill is the most crushing experience imaginable: nothing will avert their decline, no matter how tenderly you minister, how hard you love. Days began at 3am with her wailing voice and from then, I would be checking her temperature, wiping up vomit, changing sweat-sodden sheets, dispensing medication, showering her, emptying catheters and opening fortified juices, taking her temperature again … every miserable task repeated 10 times a day, on and on and on.
I dreaded those early dawns when, half awake, I’d steel myself for another day of bearing witness to her suffering
Our life became very small and airless, as if we had been walled into a tiny cramped space by her illness and its demands. Alongside the practical tasks, caring requires an exhaustingly intensive attention, a kind of loving hypervigilance, because failing to heed the precise quality of tremors or pitch of moans can mean the difference between a night at home and emergency hospitalisation. Often, I’d dream I was a car tyre spinning on hot concrete, the smell of burning rubber as it screeched, then 3am would come and it would all begin again. I dreaded those early dawns when, half awake, I’d steel myself for another day of bearing witness to her suffering.
This was made so much more difficult by the failure of our society to support care effectively. All the building blocks of life are ill suited to these circumstances. Employers expect fixed hours at the office, a requirement that starts to seem surreally pointless when your morning involves trying to lift someone off a toilet. Families are smaller than in the past, creating a heavy care-load on too few shoulders, and our atomised lifestyles leave us without local support.
Our social security system treats care as an afterthought, offering an insultingly low carer’s allowance of £67.25 each week. In carer support calls and forums, the topics of conversation are as repetitious as our days: financial distress, depression born of isolation, the stress of juggling care with employment, lack of local services. Superficial sticking plasters like the paltry carer’s allowance or the week of unpaid carer’s leave the government is currently considering don’t solve these deep structural problems.
Our society and its arrangements cannot cope with care, and yet care is an inherent part of human life – all of us will need to give or receive it at some point. Why, then, have we arranged things so badly that nearly three-quarters of carers have reported mental health issues due to caring, 81% feel lonely or socially isolated and over 40% have had to cut back on food and heating in order to make ends meet?
Considering this abject state of affairs, when coronavirus took hold it was a relief: now everyone was isolated and living with constant anxiety about illness – your “new normal” was our “old normal”. It presented an opportunity to stop treating care as a problem to be shoved away with quick fixes, and instead to treat it as an organising principle, righting some of those structural wrongs.
Before Covid-19, research found that 60% of carers who were also working thought their employers were not carer friendly. But now the pandemic had shown that bosses could cope with employees working flexibly and from home too. The personal and professional spheres no longer had the false divide that made me feel I was living this double life: caring was newly visible, a matter of solidarity or amusement when its demand interfered with video calls.
My mum and I had struggled because we lacked locally available relatives to support us: the virus revived place-based communities in the form of local mutual aid networks. Income support schemes and talk of universal basic income pilots demonstrated a widening of the political imagination that could lead to a revised and truly supportive social security system. All these building blocks of society – work, community, social security – were constructed in ways that ignored or undervalued care; coronavirus was forcing them to be interrogated and reshaped.
Yet, as the year draws to a close, little seems to have changed permanently for those in care. Conversations about the issue are dominated by parenting in a pandemic, forgetful of this other, sadder form, which is unaddressed by schools reopening. Employers have got used to virtual home-working but are now ramping up employee surveillance, instead of introducing permanent shorter working weeks and the kinds of flexibility needed by carers. Government is winding down income support and, while calls for a basic income continue, they seem far from victory. We are at risk of learning too little from the virus.
My mother passed away on 29 September. Caring for someone into their death is heart-wrecking. I’m left wondering why we’ve built a world that makes it even harder. Covid-19 has opened our eyes to what’s possible – to the many ways in which we could reimagine our society and economy to put care at the centre. Are we going to close them again?