The Cost of Care
by Hannah Hutchings-Georgiou
Peninsula Press, 160pp, ISBN 9781913512279, £10.99
On either side of my grandmother were two women holding her up. There was my mother, stood at the front, willing her forwards, gently tugging at her arms, trying to ease her into the next step. And there was C, the paid carer, stood from behind, in case my grandmother should lose the little balance left to her and fall backwards. Both women were using all their strength to compensate for my grandmother’s lack of it; to compel her to achieve the great feat of walking a few metres from the door to a chair. As the awkward trio — the reverse of that happy triad when a child takes its first steps away from its parents towards independence — shuffled painfully on, I looked away. When my grandmother drank her tea from a straw, I looked away. When my grandmother was helped onto the commode, I looked away. And when my grandmother could no longer walk or sit upright in bed or drink or eat at all, I looked away. I looked away because I couldn’t bear to look at what she — we — had become.
Lynne Tillman’s latest book, Mothercare, is an exhortation to do the reverse: to take a long, hard look at the (grossly inadequate) systems of care in place – or not – for those who are unable to care for themselves. It is a call to examine the deep complexities that caring in all its forms — medical, social, private, domiciliary, familial — involves. It is a plea to look directly at the suffering of all who are part of this cared-for-carer relationship: the ill or disabled individual, the family, the precariously placed private caregivers and companions, the doctors and nurses, the surrounding friends. And it is an honest exposition and exploration of how racialised, gendered and classed the labour of care-work is and continues to be. Styled as an ‘autobiographical essay’, Mothercare not only tells the story of Tillman’s mother and her need for 24-hour care, but unfolds the author’s own experiences during this time, bearing witness to the extreme difficulties that being a daughter-cum-carer entails. Unlike my response to my grandmother’s gradual decline and suffering, and to the inevitable pain and hardship this caused my mother and her two sisters, Tillman’s gaze on this mother of a situation is piercing, searching and unwavering but never without compassion, understanding and care for those who come under it.
Mothercare’s focus begins with Sophie, Tillman’s mother, the somewhat insensitive yet incredibly capable matriarch of the family — that is, until illness hits. Before plunging us into the stressful and distressing details of caring for her sick mother, Tillman gives us a short but telling history of Sophie’s earlier life, one that will shed light on their own difficult parent-child dynamic and the inevitable reversal that illness and care-work demands. We learn of a young woman who grew up in the city, who had ‘promise’, artistic passions and desires that would have been explored, even sated, if it wasn’t for the suburban housewife role she and most women in the 1950s were expected to adopt. This may sound like extraneous detail to that concerning Sophie’s illness and the eleven long years Tillman and her sisters spend looking after her, but it is integral to both, and sets up the essayistic discourse – on gender, race and class — beneath the (auto)biographical narrative.
Determined to return to NYC and fulfil some of that suppressed ‘promise’, Sophie moves to her own apartment and reacquaints herself with old friends, attends plays, watches movies at MOMA, walks everywhere and lives for several years as ‘an independent character’. But at 86 years of age, this brief stint at independence is cut short and so ensues the increasing dependency on Tillman, her sisters and a whole host of mostly female care-givers and companions. It is this newfound and somewhat unwanted dependency that forces Tillman to look, throughout the pages of Mothercare, from her mother to the various institutions and systems she must navigate in order to help her.
Diagnosis is the tip of the immensely invisible and often life-shattering iceberg that is illness and care-work. The act of looking here, too, becomes crucial. Looking at how medical professionals such as neurologists treat your ailing parent, how they treat you; looking up the symptoms, the terminology, the answers, the suggestions they give you; looking and listening and scrutinising and evaluating when they often fail to do so. Diagnosis in Mothercare becomes, therefore, a labour of love, a continual act of care that Tillman and her sisters pursue relentlessly despite the careless practitioners encountered along the way. Care begins at this initial stage: it is not just the subsequent imagined commodes and innumerable bottles of medication to which my grandmother and mother were subject, though it is this too. Rather, it is the noting and listening and interacting and discussing that the sick person may not be able to do for themselves. It is pushing for a diagnosis – and in Sophie’s case it was the hard-to-determine normal pressure hydrocephalus, a disease not dissimilar in some symptoms from Alzheimer’s but very different in its actual cause, irregular manifestation and treatment from it – and then, the continued push for this label to result in life-prolonging and pain-reducing medical and, if possible, state-provided care.
This is a business of looking in the act of caring and caring in the act of looking. However, it is a business that costs - and many are unwilling to pay it. Tillman relates one incident when the shunt (inserted to redirect fluid building up on the brain to elsewhere in the body) malfunctions resulting in her mother having a grand-mal seizure. Signs leading up to this were repeatedly missed by a paid assistant carer, no doubt looking the other way in the midst of the job that is care. In the ambulance with her mother, Tillman describes her unconscious mother ‘stitching an invisible garment’. Later, after successive failures and inactions by the hospital staff, Tillman exhaustedly slouches against the wall weeping in front of one her sisters, her mother continuing to sew aimlessly into the air. This is the cost of care – witnessing sights you never thought you would, scenes and situations others do not want to witness or deal with; having your life turned upside down, your schedule dashed, your work disrupted, your relationships damaged, your emotions tested to the point where you’re a crumpled heap crying into the uselessly plush hospital carpet.
Elsewhere, though, even Tillman cannot look, turning away when the abject intervenes and becomes too much. The bodily proximity of her mother to her own when seating her on the commode, wiping her clean and dumping the contents down the toilet never fails to sicken Tillman (she longs to look away); when cleaning her in the bath, the same disgust rises up. For the author, care-work both transgresses and reaffirms familial bonds; it continually oversteps the bodily and emotional barriers between kin, only to demand that such kinship is responsible for the provision of it, the constant care, the constant looking and giving a shit about, well, your mother’s actual shit. ‘It’s what people always say,’ Tillman intones when talking about these ‘small, benevolent invasions’ of both their bodies; ‘but she’s your mother. You only have one.’ This maybe so, but elsewhere in this grand mère of a memoir, as the subtitle On Ambivalence and Obligation suggests, Tillman expresses her frustration, her exhaustion, her resentment of having to care for this other body, which is not her body, but becomes it by extension of the work this blood tie requires of her. ‘All of us sisters were goaded by conscience,’ Tillman muses later in the book. ‘That’s not a terrible thing,’ she observes. No, we conclude with her, it truly isn’t. After all, that’s often what keeps us going in life when the shit gets real and explicit.
Honest admissions like this are just one of the encouraging aspects of Mothercare. Those of us — myself and my family included — who have inherited the labour of care are grateful to be seen in Tillman’s words; those who are compelled to work in the sector of social care even more so. Reflecting on the women hired to look after or be companions to her mother, Tillman looks squarely at the truth of this arrangement; that most of these women were from overseas, were of colour, were undocumented, precariously placed and separated from their own family. Comforting herself that she had not played into an ethical problem of hiring a woman of colour from the US gives way to a discomforting and unavoidable awareness that her whiteness, her privilege and the legacies of ‘colonialism and imperialism’, are implicit in a structure that perpetuates and rewards all four. ‘The terms and effects were not abstract, they were personal, embodied in the women we were able to hire for Mother,’ Tillman acknowledges. Looking at the inequalities and inequities inherent to the systems of care, we, like Tillman, see that this labour and the world it attends remains one we do not want to be part of, let alone see. But since the pandemic, sickness and the manifold forms of care-work it requires have become more visible in the tired bodies of both the cared-for and carer, in the governments that evade and betray them, and the families left to pick up the pieces in their wake.
Mothercare persuasively and eloquently encourages us to look inwards at the care we may or may not have to give, and at the true cost of this giving. But most importantly, it asks us to look outwards, at the institutions of care and the actual people, the actual bodies that make up these corps. Looking at my grandmother, looking at Tillman gazing at her dying mother, we must ask ourselves, as Mothercare implicitly does, how can we make the work of care more bearable, the load lighter, the act less dependent on certain individuals over others. How can we, as a society, care more as a whole, and not look away.