The problem with caring isn't caring, it's capitalism

I can't read another "poor me, my relative is ill" article

A few months or years ago (what is time?), some of the people I follow online went wild for a published author’s candid, punchy take about her disabled mother that started with a vivid description of the run-down family home.

The mess and squalor was depicted with a superior attitude and mocking tone, not least when it came to a discussion of incontinence that was ramped up for shock value and filled with prurient, self-congratulatory glee.

This was OK, the piece implied, because the parent in question was negligent and had addiction issues.

I can’t get behind that but then again I’m a prude who doesn’t think anyone’s health should be publicly written about unless they’ve given their enthusiastic consent and have the ability to understand what that means.

I’m clearly in the minority, as the media continues to be filled with feel-good and feel-bad stories about caring for (or sometimes just existing near) a family member with a chronic or terminal illness.

I’ve seen too many headlines where the message appears to be, “Sure, my parents are dying, but can’t I enjoy MY life?” and maybe I’m over-sensitive but that seems like a callous way to frame the situation.

I’m not a martyr and I’m not saying I’m an angel. Before I realised that providing cake was the answer to most discrepancies, there were times when I hid in my room to get some respite. But I didn’t see my mum as a monster or a burden, someone holding me back from my real life, as if illness and death aren’t really part of our time here but a distraction from holidays and brunch dates.

Caregiving can be demanding and emotionally draining and it would be great to have someone else to share the experience with — in fact, every carer should be able to access that, whether they have family around them or not.

I understand that, if you had a difficult relationship with your parent(s), it might not come easily and you might choose not to do it at all. But, without idealising the situation or pretending to be perfect, I can honestly say I considered it a privilege.

That’s easy for me to say given that I didn’t have to take on personal care or struggle to manage my mum’s mobility and toileting needs in a system that provides inadequate support and expects family members to fill the gaps.

But arranging and going to hospital appointments? Booking taxis? Doing washing? Filling and emptying the dishwasher? Changing a duvet? Preparing jam on toast or buttered crackers or a bowl of Shreddies?

Sometimes it was tiring or boring but none of it was an insult or a burden or a trap. It was caring. It was sacred. It was love.

The problem was never the intricacies of my mum’s symptoms or the extra labour they caused. The problem was that while this was going on, I was expected to continue to function as before.

I don’t just mean in terms of work, because I was able to take some time off, although, as in every modern workplace, the online system demanded hospital letters and doctor’s notes.

My bosses were understanding when I cancelled shifts last-minute and I wasn’t faced with unreasonable demands or any of the small cruelties I’ve heard bereaved friends and acquaintances mention since.

But just the fact that work is necessary at a time like this, that most of us will have to balance earning a living with caring for someone, that there’s no way to opt out, that society constantly tells us that work is healing and helpful when actually it’s often a distraction from something much bigger and more important… that’s what I have a problem with.

I would rather live in a society where we get paid for being alive, where we can drop work when we need to take care of ourselves or others, when we’re not constantly being fed the capitalistic lie that selling our labour has any moral value. I say this as someone lucky enough to love to write and be paid to write: I’d prefer it to be a choice than a necessity.

I get that, as with parenthood, some people would rather work, find fulfillment in it and enjoy the distraction of it.

But if I’d had my druthers, as soon as my mum got ill, I would have cared for her and that’s all. I wouldn’t have spent my lunch breaks making her food and rearranging her blankets, finished late because of caring interludes or burst into tears as I typed, not sure whether she was in a temporary crisis or the downward spiral to death.

Our systems don’t know how to give us grace and we don’t know how to give it to ourselves, how to work while grieving or pre-grieving or wondering when we’ll have to start grieving. And while our employers might be flexible, it’s often not viable to allow most of us what we need: unlimited time off on full pay with no expectation of return.

While I’m grateful for every employment opportunity I’ve ever been given, I would sacrifice it all for my mum to still be here. I’d happily take care of her forever and never write again.

Caring isn’t the problem, the lack of support for carers is the problem. The obstacles to devoting yourself to caring are the problem.

Capitalism is the problem. Always has been, always will be.