We turned her every couple of hours in the end, though somehow the procedure seemed more incessant than that. At times, it felt like a peculiarly brutal routine to inflict upon someone under your watch. But there was no room for compromise in the instruction we’d been told to follow: pressure sores can be deadly. And to have any chance of preventing them, we had to subject my grandmother to regular, distressing turns, which couldn’t be done fluently due to the effort involved; turns that demolished whatever quantum of peace only morphine could supply her in repose.
Before long, the task inevitably acquired a regimental punctuality. Yet it remained too intimate ever to be entirely functional. Nor did it become any easier with practice. By design, the whole process is rarely seamless. One hasty move can be torturous. Equally, though, overcautiousness carries its own perils: repositioning someone in slow motion prolongs the risk of aggravating existing abrasions. However tightly we policed our complacencies, there was always room for agony; and however inescapable such pain is, we weren’t about to absolve ourselves of the additional suffering we alone seemed to be inflicting. If it appeared as though we were destined to fail, this was hardly an acceptable compensation. The constant glare of anticipatory grief leaves the labor of care bleached of self-forgiveness.
The house in which my mother had been born and where she now once again lived—on account of poverty, not out of choice—became the place where she would see her own mother die. This symmetry was a privilege amid formidable sadness: “Most people want to die at home,” observes dementia campaigner and novelist Nicci Gerrard, yet “most die in hospital.” And while the majority of terminally ill people “want to be with family,” too “often they are alone with strangers.” How fortunate we were to be bucking that trend.
It is caregiving’s emotional and physical contours that are illuminated throughout Rachel Clarke’s Dear Life: A Doctor’s Story of Love and Loss. Although the book centers on the remarkable work of professional hospice staff—who ensure that people who don’t spend their final hours at home are at least surrounded by dignity, calm, even consolation—Clarke’s vision of care’s complex entwinements of torment and fulfillment is unconfined to specialist practitioners. As such, she reads distinct end-of-life experiences in medical settings for what they reveal about our common sentiments toward illness and dying; sentiments that imbue countless, apparently unexceptional, yet affectively multifaceted acts of caregiving that take place outside clinical environments too.
Link to the rest at Public Books