Towards the end of the 1990s, Harris and Bichler (Reference Harris and Bichler1997) published a groundbreaking book on men giving care. The first half of the book shared a qualitative analysis of 30 men's accounts of caring for their wives with different stages of dementia; the men's ages varied but what remained consistent in the narrative was the sense of commitment that men applied to their role. The book also discussed the various coping strategies that the male spouse carers employed and described them as: maintaining control; using a problem-solving approach; arranging respite care; establishing a structure regime; allowing time for themselves outside the home; and relying on strong religious beliefs. The men also identified themselves as ‘husbands’ rather than as ‘caregivers’ (p. 20), preferring to see their role as one of continuity rather than as a new identity.
Both during and upon completion of this review of The Caregiver: A Life with Alzheimer's, I was reminded of Harris and Bichler's (Reference Harris and Bichler1997) findings: time may move forward, social policy may change and new theoretical insights may be brought to bear on care-giving, but what remains consistent is the day-to-day life of families living at home with people with dementia – the struggles, enjoyment, frustration, love, dedication, sadness and unending human care. And, the expertise that prolonged exposure to such a life situation brings to the family carer. As Alterra states, ‘we caregivers know more than nurses and academics. We live it’. (p. 126).
In many ways the three simple words ‘we live it’ are the embodiment of the book; the text is care-giving as testimony. Aaron Alterra shares the story of his life – a life that starts with a reminiscence over his early marriage to ‘Stella’ and quickly moves to make sense of his wife's early memory loss/lapses within the context of their everyday life, and of their past life together. The book is so well written that you might find yourself reading it as a story rather than as an autobiographical account. The book also shares a simple message: that carers are people too and that their lives are also significantly compromised and overshadowed by dementia. It is a powerful voice that deserves to be heard – and a powerful book that deserves to be read.
As a footnote, the final page of the book reveals that the author has used a pseudonym. Aaron Alterra is actually E.S. Goldman, a published author and contributor to the Atlantic Monthly. The book was first published in 1999 by Steerforth Press, Hanover, New Hampshire.
