Losing a parent is a bewildering, lonely experience. Here are the things I wish I had known before | Gaby Hinsliff

. UK edition

Illustration: R Fresson

There’ll be exhaustion, love tinged with occasional rage, even moments of black humour. But my mum would want me to tell you: don’t be afraid, says Guardian columnist Gaby Hinsliff

My mother’s house looks exactly as she left it.

Two novels sit by the armchair, their pages neatly marked for book group. Pinned to the noticeboard is a shopping list in only slightly shaky writing, with “FRUIT!” in urgent capitals, and “make soup” underlined. The sole outward signs of something missing are her cats twining needily around me – loneliness having finally overcome their innate horror of visitors – and the one thing I can’t bear to look at, which is the empty hospital bed marooned bleakly in the sitting room. Delivered by social services when it was deemed she could no longer manage stairs, it is now stripped bare, awaiting collection. Another family will be needing it.

This is not my childhood home – my parents moved here only a few years ago – but it’s the one, I suppose, where childhood formally ended. Washing up at her kitchen sink a fortnight ago, looking out at the same scarlet fuchsia I remember blazing in the garden when my father died, it struck me for the first time that soon I would no longer be anyone’s daughter. What I didn’t know then was that the loss of both parents would feel less like the end of a relationship and more like its transition to a new stage, of finally being able to see them clearly as people in their own right.

I thought I’d nailed that years ago, but of course I was wrong. When news spread of her diagnosis – an aggressively fast-moving cancer, erupting from nowhere to overwhelm her in six weeks – my mother’s friends descended in hordes, bringing soup and cake and clove-scented sweet peas from their gardens. But they also brought stories I hadn’t heard before. Though my father was the outwardly gregarious one and my mother more self-effacing, evidently she was the one who watched and listened and caught what others missed. I already knew that for a while she’d channelled that into volunteering as a Samaritan – her way of dealing with the suicide of a close family friend – and training as a Relate counsellor. I was vaguely aware, too, that in retirement she’d founded local hillwalking groups, a social club for widows – and who knows what else. But stupidly, I hadn’t realised what the things we took for granted – “there goes Mum, on one of her missions again” – meant to others. She had been the author of small kindnesses remembered for decades.

Have a baby and the world falls over itself to offer advice. But losing a parent remains a private, bewildering, lonely affair

Why wait for a funeral, one of her friends argued, to say nice things? There was talk of a pre-party, a wake Mum could actually join in, abandoned when it became clear she was already too tired. But the urge to invent new rituals makes sense. With modern medicine rendering heart attacks and strokes more survivable, death increasingly announces itself to elderly people not suddenly overnight but slowly, and with plentiful warning. The creeping degenerative diseases of old age allow more time to say goodbye, or make amends if necessary. But they also force us all to look death squarely in the face, and that takes no little courage.

Fiercely independent at 84, my mother dreaded going into a home. So when she was given less than three months to live, my sister and I promised to nurse her at home, despite having no real plan for managing that alongside jobs and teenage children, beyond somehow basically winging it. Have a baby and the world falls over itself to offer advice. But losing a parent remains a private, bewildering, lonely affair. Here, then, are a few things I wish I’d known at the beginning of summer, in case – like that empty bed – another family can use them.

That care for the dying will trigger the instant muscle memory of caring for small children, if you had them: the same broken nights, same constant vigilance, same exhaustion after a day in which you can’t name a single thing you actually did, and the same unmistakable feeling of love tinged with occasional rage. Then as now we wouldn’t have coped without understanding employers, good friends and neighbours, an army of often overworked NHS and care staff, and things my sister learned from training as a midwife. (For the love of your lower back, get a professional to show you how to move a bedbound patient safely.)

That there are moments of unspeakably black humour to be found even in dying, if you’re that kind of family.

That there are times when your role is to argue with their doctors, and times for shutting up and listening, and you may never be wholly certain which is which.

That if an old person in beady possession of all their marbles goes seemingly mad overnight, test for an underlying infection causing delirium. Antibiotics work miracles.

That you should keep the bad photographs, because afterwards they’re the ones you invariably want to look at: anything where the kids were scowling, the haircuts sorely regrettable, the beach day rained off. It’s the life actually lived, not the one curated for Instagram, that you miss.

That death can trigger an overwhelming urge to put one’s house in order in ways that make sense to the dying, but absolutely nobody else. (My mother had to be dissuaded from getting the sitting room repainted; a friend’s father insisted on alphabetising his CDs.) Within reason, don’t fight it. Like the manic nesting phase of late pregnancy, it’s all part of the process.

That if you find old letters, you should read them only when feeling resilient. Your parents had lives before you existed and secrets they may not have shared.

That death itself is different for everyone, but that even the most peaceful kind looked to me like a form of work. The best way I can describe it is like a reverse childbirth: you can comfort the person going through it, but you cannot be in it with them.

That it wasn’t nearly as frightening as that may sound.

That grief doesn’t always wait for death. Dementia meant I lost my father in some ways years before he died, and a wise friend said that nursing my mother might feel, in retrospect, like starting to work through bereavement in advance. She wasn’t wrong.

That adrenaline may power you through initially, and kindness may undo you.

And lastly, what I think my mother would have wanted me to say: that if this is something you have yet to face, don’t be afraid. But if you’re already there and struggling, then you are nowhere near as alone as you think.