A memoir, by definition, is composed of memories. It is almost unbearably poignant, then, that Song for Rosaleen is a memoir that exists only because of memory loss. Written by Wellington oral historian and editor Pip Desmond, it documents her mother’s slide into vascular dementia and the effects of this on the entire family.
Perhaps this sounds grim – and of course in many ways it is. But Song for Rosaleen is gripping. It is at one level a personal account, at another a meditation on memory itself, and at yet another an erudite critique of how our society treats the frail, dependent and voiceless. For this latter reason alone it should be essential reading for everyone who works in health: management, non-clinical and clinical staff alike.
Desmond began to write Song for Rosaleen six years after her mother’s death, hoping that telling her story “would help my family and perhaps others come to terms with the heartbreak that is dementia”. Rosaleen had lived a private life, caring for her husband and six children, volunteering in the community, staying out of the limelight. She was a stylish and courteous woman, independent and self-contained. As the illness began to nibble at her memory, her sense of self began to crumble, and with it her confidence. Desmond writes of how the bafflement surrounding Rosaleen becomes a bafflement that involves the whole family. Every sibling brings a different Rosaleen to conversations about how things are going. Rosaleen takes different versions of herself to her doctors too, leading to misunderstandings and missed opportunities for early support and treatment. Muddle and confusion, then frank chaos, begin to engulf the family’s world.
Desmond and her siblings resolve to help Rosaleen live at home for as long as possible, reassuring her that she’s not the “burden” she fears becoming. “That’s what families do, Mum,” Desmond tells her, “they look after each other.” Eventually, however, the excruciating decision must be made to move Rosaleen into care. The guilt associated with this is profound, and compounded over time by interactions with a hard-hearted rest home culture that boils down to a philosophy of “real estate not health care”. It’s hard to forget Rosaleen’s plea, earlier in the illness, “Don’t put me in a home.”
“In a curious way,” writes Desmond, “the facility manifested the symptoms of the disease it denied: confusion, inertia, forgetting to get back to us, denial and anger when challenged.” She notes, despairingly, that there is:
no holistic approach to her care. No one ever seemed to ask why Rosaleen might be anxious or angry or withdrawn, why she wouldn’t eat or take her medication, and what might be done about it. There didn’t even seem to be a system to pass on information from one shift to the next.”
As so often, the personal is also political, and Desmond’s reflections point to structural problems that directly affected Rosaleen’s care. She writes, for example, that:
I’d often thought it would be easier to deal with dementia without the emotional baggage attached to being a daughter. Now I realised the baggage buoyed me up as much as it weighed me down. I had suitcases full of memories, love, gratitude and family ties to draw on. The carers at the retirement village were paid low wages to be overworked, unsupported and shouted at by strangers. Almost all were immigrant women, looking after their adopted society’s old people, one of the few jobs they could get. It said a lot about the value we accorded to both groups.”
Love song, lament, protest song: Song For Rosaleen is all these and more. Highly recommended reading.
Sue Wootton is co-editor of Corpus. Song for Rosaleen by Pip Desmond is published by Massey University Press, 2018.