How freedom of movement freed me to care

Sparking my fury was the utter dissimilarity between what Fraser subsequently described – the idea that, busy with our exciting, narcissistic lives, we children are all too keen to offload the grim bits to any passing care worker, however low-paid or temporary – and the grinding reality of what I, and millions like me, are experiencing as we desperately try to care for our loved ones.

Far from “casting off our responsibilities”, our daily reality is the fear of missing the subtle changes in our relatives’ conditions that an expert would know spelled danger. Our reality is knowing we would go to the mattresses for them, even as we sideline other parts of our lives, knowing that this in itself causes the sick and frail distress.

For here is the truth: bottom-wiping is easy. Nobody wants to do it, but everyone can. That a bum-cleaning refusenik can be produced is not an argument for societal and familial breakdown. Even the one who so infuriated Fraser and his GP friend might have her good points: I admire her persistence, for example, in actually getting through to her father’s surgery and to a medical practitioner. Fortunately, she wasn’t asking for an appointment, for which, at my own father’s practice, the wait stands at two weeks.

This is where the carer’s struggle lies; not with the willingness or capacity of anyone – Brexiteers and Remainers alike – to provide loved ones with basic care-giving or, in Giles’s words, a “highly successful form of mutual care”. Our struggle is in accessing medical services and navigating the profoundly tangled thicket of systems, departments and organisations. This is the scandal, not a daughter’s willingness – or otherwise – to come home and get her hands dirty.

For this “rootless Ronin” has come home to spend hours discussing her father with healthcare professionals. By far the most intractable and bewildering moments have related to procedure: a test that is repeated, not to see if there have been any changes, but because it was originally carried out at another hospital, which operates under a different authority, and which therefore does not automatically share its results; or those lab findings which are expected promptly, but which prove mysteriously elusive even to the doctor who ordered them in the same building; or attempts to borrow the equipment to help my father at home that requires a gargantuan and cross-departmental swapping of paperwork to procure. There’s also the feeling that, too often, the advice you’re getting is driven not by medical necessity but by an unseen matrix of spreadsheets and cost centres.

My bottom line is not “individual acquisition and self-advancement“, it is the relentless determination to have my father assessed not merely as a set of symptoms, but as a person who exists in continuous time – not only at the moments when the professionals glide to his bedside. The crux is not that he weighs only nine and a half stone, but that a year ago he weighed eleven; not that his skin is failing to perform its basic task of retaining body heat, but that he has been freezing for months, even as the rest of us cast off our jumpers in his stiflingly hot flat.

It is not that the doctors do not know this, or that they do not care; it is that they are busy, busy, busy. In my fantasy, we sit down in a quiet space, and I calmly detail all the manifestations of my father’s sickness; in response, they blend what I have said with clinical observations and the results of scopes, scans, biopsies and blood tests, and slowly a picture and a plan emerge.

The reality, however, is that every night I return from hospital to my father’s flat and have to block out the picture of him lying uncomfortably in his bed by obsessively cleaning. I have to banish the fear that, as happened the other day, an unknown doctor will appear by his bed, give a cursory glance at his hands and say, “looks like eczema to me”.

Paradoxically, per Fraser’s argument, that I can give my dad this support, unconditionally and open-endedly, relies on my not being at the centre of a traditional family unit, or bound to a conventional job. Having met my partner relatively late on, we do not have children; were we to, I would not at the moment be able to care for them. So, fine, my partner would increase his share of childcare; but how would he work? Most people can cover these issues for a week, but for months? A year? Five years?

And that I’m continuing to work at all, albeit in drastically reduced amounts, is possible because I can freelance from anywhere; because my professional life is both precarious and adaptable. And because I learned that lesson from my parents, who spent their young, post-war lives shifting across the globe – not as rejection of their own families, but because those families had been fragmented by death and instability. They met as crew on a cruise ship.

One consequence of this was that my parents’ friends were from everywhere; my godmother a Norwegian who married an Italian, my father’s Polish chums in Acton, waiters and chefs and shopworkers from Morocco, France, Portugal. Now, my father has extra-large, bandage-friendly socks knitted for him my Polish friend’s grandmother, a woman he will never meet; his bedside is festooned with get well cards made by the Irish nieces I acquired through falling in love with their uncle.

In Ireland, too, in the countryside where I’ve made a home, my Irish family has lit a candle for my dad. Back in England, I am supported by my own friends, who send loving messages and offers of help and who make whirlwind trips to see me. Among all of these is my closest friend and her wife, who have taken their turn at dad’s bedside, brought him gluten-free cake and essays by Clive James and made him laugh.

I can never repay them, but then I don’t have to. What Fraser fails to understand is that the pulling apart and reshaping of the family unit through movement and mobility has enlarged, rather than diminished, the canvas on which we can love one another. “Are you all family?” asked a nurse, one evening, as my friends sat with us. I was about to explain the ins and outs, and then simply said, because it is true in the most important ways: “Yes.”

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Alex Clark is a critic, journalist, broadcaster and literary judge. She is the guest artistic director of the 2019 Cambridge Literary Festival.

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