Can't we talk about something more pleasant?

A colleague gave me a copy of Roz Chast's memoir about caring for her parents in the years when frailty and dementia obliged them to move from their beloved apartment to an assisted living facility. After reading it, I straight away ordered copies for several family members, colleagues and some patients' families who were going through a particularly tough time. Here is why. Up even until 2–3 years ago, the patient bulletin boards at the hospital where I work were covered in often urgent notices, some hand written and photocopied, advertising various support groups, for people bothered by everything from lung cancer to thyroid nodules. (The Internet now largely is the outlet for this instinct to share stories with others who understand sentiments that might otherwise go undiscussed.) In recounting a sometimes fraught relationship with her parents, and of her own feelings, Chast is unsparing. Even so, the book's presentation (she is a longstanding contributor to the New Yorker, and most of the book is told in cartoon panels) makes for an easy and humorous read, despite an often compellingly sad subject matter. Chast grew up the only child of older parents, and unsurprisingly has had high expectations of herself. On 9 September 2001, for reasons she still cannot explain, she felt an intense need to visit her parents in Brooklyn, where she had grown up, in the apartment in which they still lived. She found them, in their late eighties, in a new level of grime: ‘a coating that happens when people haven't cleaned in a really long time. It covered everything’. Her first instinct was to clean, but instead of being awarded the accolade of ‘the perfect daughter’, she found herself chastised. ‘Daddy and I are fine’. She concluded that ‘I wasn't great as a caretaker and they weren't great at being taken care of’. They were not about to change, so it fell to her to reflect on her place with them growing up, and her place with them now. Despite not being keen on planning, the Chasts had scrimped and saved. They would need the money. In 2005, when they were both 93 and getting frailer, she finally persuaded them to go to an elder lawyer, who ‘specialized in the two things my parents found most difficult to talk about: death and money’. The lawyer was able to persuade them that in the face of one, they should pay attention to the other, consolidate their savings and arrange for power of attorney for their daughter. As the year went on, her mother had a fall, for which she first took to bed, and became quite unwell with severe abdominal pain, anorexia and fever (which turned out to be diverticulitis). She was admitted to hospital. Chast describes the familiar chaos of the Emergency Department, and a very long wait, mostly in a hallway stretcher. Only then did she realise how cognitively impaired her father had become, and the savage consequence of ‘having to get terrible news over and over again’. Her mother, discharged home, never fully recovered. Her father's condition slipped progressively, so that by 2006 a move to assisted living had become inevitable. Even though they saw through the euphemisms of a ‘luxury residence for people in their golden years’, they consented to the move. Chast recounts many of the resulting indignities. She describes assisted living's business model of ‘the up sell’, in which an already steep rent can double within a year, as additional services are added when inevitable decline progresses. The social scene can be high school all over, except that now the cliques and pettiness come on a background of decay. Hobson's choice: a new doubling of the rent or the separation of her mother and her father. She describes her father in a near delirious state. Having for a while stared at a Kleenex on the floor ‘almost in wonder’, he exclaims: ‘Kleenex abounding’. Like her mother later, her father was soon to die with dementia, in a way that confounded somewhat the expectation of hospice workers, for whom death on a cancer model appears to have been more normative. Consider this, of all her many striking insights: ‘What I used to think happened ‘at the end’: one day old Mrs. Mcgillicuddy felt unwell and she took to her bed she stayed there, oh, about three or four weeks, growing weaker day by day. One night she developed something called a ‘death rattle’ and after that she died the end. What I was starting to understand was that the middle panel was a lot more painful, humiliating, long, nasty and complicated and hideously expensive. My parents have been in pretty good health for their age—they did not have heart disease, diabetes or cancer- but the reality was that at 95, their minds and bodies were falling apart’. This is a good starting point for an inquiry into how frail people die, compared with those who are fit. We will need it, especially if having people die fitter is to become a public policy goal. Chast relates the passing of her father, and the progression of her mother through many of the same stages. Chast well describes her conflicting emotions, of gratitude and jealousy, towards the woman who was caring for her mother. When I discussed this with a younger colleague, he identified this as being particularly apt, at least in regards to he and his sister: ‘she nailed it’, he said of Chast's descriptions. It is in that sense of having ‘nailed it’—of providing a detailed, funny, heart breaking and true description of what it is like to care for and lose elderly parents - that this book will find its greatest impact. As points for discussion and for reflection, and as a means of reassurance, this work will offer to many the validation and support of their imperfect roles as imperfect caregivers. It is a great resource.

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