Maura Kinsella

The first thing anyone gave me as a carer was a sheet of A4 in a plastic wallet, with my mother’s surname spelled wrong at the top. It ran to two paragraphs and eleven abbreviations. Nobody explained any of them. It covered her bypass, her wound, her tablets and her follow up, written in a shorthand meant for the next clinician who would read it, and I was not the next clinician. I stood in the corridor outside the ward and read it four times. That letter was my entire handover into a job I had not applied for.

I had gone in that morning as a daughter visiting after heart surgery, and I went home that afternoon as the person responsible for whether she took the right tablets at the right time. That was 2022. Since then there has been a readmission nobody saw coming, two falls, a benefits application I filled in wrongly twice before anyone told me which box had done it, a conversation with my employer that ended with me going to three days a week, and the week we finally brought paid carers into the house, which I had been putting off for about a year on the grounds that it would mean I had failed.

What got me through it was not knowledge, it was a lever arch file. Discharge letters, medication lists, the names of everybody who had ever rung, dates, refusals, reference numbers. When somebody in an office told me a referral had been made, I could say when and by whom. The Care We Need is built the way that folder is built: not as a story you read from the start, but as sections you can open at two in the morning when the thing you need is one specific fact. Where a page is clinical, Dr Nadia Farhat signs it and her name is on it. Where a page is about siblings or forms or how you feel at four in the morning, it is mine, with the sources shown.

I am not a nurse, a social worker or a benefits adviser, and I have never cared for anyone but my own mother, so I write about the shape of the job rather than about your situation, which I do not know. The part I still get wrong, four years in, is asking for help early enough. I know precisely what I would tell you to do, and I am still slower to do it myself than I should be, which is worth saying out loud on a site that spends a lot of its time telling carers to accept help sooner.