The other side of care: Some thoughts on caregiving and grief

Shortly after agreeing to contribute to this volume of IJFAB, I found myself growing uneasy with doubt about the fit between what I wanted to say and the overall theme of the issue. The reasons for this hesitation came to me slowly, but eventually revealed themselves quite clearly: my reluctance was grounded in the fact that I knew that, in a volume dedicated to aging and long-term care, I would be writing neither about the various forms or variations of care, nor about the many abuses of the vulnerable caregiver within institutionalized and politicized socioeconomic violence inherent in the largely internationalized Global Northward drift of skilled care labor. As morally—indeed, as viscerally—vital as these issues are, and as much as they play a rightfully central role in any discourse on care, I knew that instead, I wanted to talk about something else: I wanted to dwell a little bit on the brute fact that for a number of long-term caregivers who also happen to be intimately close, either by relation or by choice, to the cared-for, the suffering inherent in the process of care can, at times, have less to do with structural socioeconomic injustices, and more with the fear that care would end not with recovery or even stabilization, but with its opposite. And if and when this dreaded outcome did come to pass, the question about the moral perils of care would then have to be rephrased, reconfigured: What happens after that sharply visceral moment of care’s denouement, when the pills, syringes, and bedclothing are put away for the last time? What remains to be said, done, or theorized when the overburdened, intimately related caregiver replaces her daily exhaustion with the empty, quiet spaces of grief? Do we, as bioethicists and as feminists who are worried about the dynamics of care relations, have something of value to say to one for whom a central care relationship is in the most significant ways in the past? Or, do we simply claim that this post-care work of mourning the dead is, in important ways, best left to the specific expertise of psychologists, counselors, theologians? Indeed, is there anything that a nonclinician can, or should, add?

I take the answer to that question to be affirmative, albeit only indirectly. The problem is a moral one: how to help another find the language to counter her emotional and psychological sense of liminality, without forcing a master narrative (of recovery, of rational acceptance, of patience, and so on) in words not of her own making? The demanding rigors of theory can be too remote; the commonality of everyday speech too blunt. The question, then, becomes a matter of how to give voice to that which is not so easily translatable, how to take the grief, rage, fear, but also the overwhelming silences, the quiet despair of blunt, raw loss, and to make of its muteness not only something expressible, but perhaps even shareable. What kind of language could suffice?

Donald Hall, having cared for his dying wife, Jane Kenyon, until her passing, has noted that “I don’t know how anyone can do this work that doesn’t write poetry.” Here, I want to suggest something similar. But first, some scene-setting.

Much has been said about the moral importance of clinicians turning to poetry and to other narratives as ways of more compassionately, more deeply engaging with their own inner worlds, as well as with those of their patients, empathetically bridging the patient–clinician divide (Charon and Montello 2002; Charon 2005; Stolt 2005; Walker 2012). Even more has been written about the moral and clinical importance of hearing the voices of the recipients of care through patient pathographies, allowing the patient to be centrally situated within this morally significant, identity-constituting event, rather than viewing her as a locus of disembodied, ahistorical symptoms (Hawkins 1999).

Yet much of the space of the post-care moment with which I am concerned here has not been as thoroughly explored by bioethicists as a uniquely disorienting, often epistemically oblique re-location...