We Have Forgotten Death Makes Us Human
Dying offends our notions of propriety. The dying wax and wane in their dying: bad on Monday, a little better on Tuesday. Their courage waxes and wanes too: one day accepting and peaceful, the next consumed with terror and denial. The dying don’t always follow the script laid out for a “death with dignity”. Caring for a dying person at home, perhaps for many months, can be exhausting and tedious. For both the dying and their families, moments of tenderness or spiritual enlightenment may be greatly overshadowed by the periods of despair, loneliness and terror. The dying may unsportingly fail to behave with dignity and courage; they may become, as Somerset Maugham observed, “selfish, mean, petty and suspicious”.
The dying person is understandably the focus of attention; the carer – the amicus mortis – is often forgotten, neglected. Marion Coutts’s memoir, The Iceberg, is told from the perspective of the carer. Her husband, the art critic Tom Lubbock, died from a brain tumour, aged just fifty-three. The Iceberg tells the story of the two years from his diagnosis to his death. Coutts was her husband’s main carer, a role which she juggled with being a mother to a young boy. The work involved is at times overwhelming: “I have never cried like this. The fatigue of it is seismic”. She observes the bitter irony of her husband losing his language as her little boy is developing his. She is brave enough to describe an episode when she lost her temper both with Tom and her son: “I want to hit someone, either of them, both of them”.
Dying at home has become the perceived contemporary ideal for end of life, but for many dying people and their families this is not realistic or achievable. Marion Coutts describes the succession of well-intentioned carers and home helps who were sent to their house as her husband’s condition deteriorated, and who only seemed to make matters worse. She realised during Tom’s final stay in hospital that he could not be cared for at home, and was advised to find a nursing home, which she knew was not the kind of environment where she or Tom wanted to be. She learned how to navigate the complex, almost secret, healthcare bureaucracy, and her sense of relief when Tom was finally admitted to a hospice is almost palpable.
In Tolstoy’s The Death of Ivan Ilyich, the dying man becomes isolated from his immediate family, who maintain the pretence, almost to the end, that he will recover, that he is not dying. This loneliness compounds his suffering. Only Gerasim, Ilych’s peasant servant, is willing to attend to his master’s bodily functions and suffering. He is not offended by the notion of cleaning his master; he understands creatureliness:
“We shall all die. So what’s a little trouble?” he said, meaning by this to express that he did not complain of the trouble just because he was taking this trouble for a dying man, and he hoped that for him too someone would be willing to take the same trouble when his time came.
“I don’t want to be a burden” is a sentiment often expressed by people with worries about dying, but seldom, I have observed, by the dying themselves. Being a burden is what our creatureliness is all about, it’s what makes us human; it is the antithesis of contemporary atomization and aggressive individualism. We should want to be a burden to those who love us, and they should want to bear that burden.