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