By Claire Verney
Published by Friesen Press, 2015
Reviewed by Teena Hendelman
It takes a village, not only to raise a child but also to care for the infirm. The number of adults requiring care in their homes is rapidly increasing. While the responsibility for care often falls on the shoulders of women, the roles of family, friends and neighbours, not to mention professionals, are crucial, as shown in this book.
Claire Verney, whose husband Michael was diagnosed with Parkinson’s disease at the age of 46, wrote Notes of a Love Song as a memoir of their lives over the years he lived with the progressively debilitating disease. Verney became her husband’s primary caregiver and medical advocate for the 20 years of his complex illness, but particularly during the last four years. She cites family, neighbours and friends as her lifeline and credits Quebec’s medical and home care system for help to carry on.
Notes of a Love Song is written in diary form, touching down on certain days over the years when there were turning points, special events or intensely emotional experiences. I surmise that the descriptions of these recorded days are based on mental or written notes, sometimes taken over a few days, but attributed to one calendar date. Verney inserts into each recorded day flashbacks of previous biographical facts and experiences appropriate to what is transpiring that day.
I find this literary form a satisfying way of learning about the family and their roots, which helps explain their current behaviours and emotional reactions. This style is more personal and engaging than the more usual chronological exposition of events.
However, the title Notes of a Love Song makes it hard to imagine how such a difficult experience can be seen as a love song; it takes almost until the end to learn that the title is appropriate. Song and singing is important to the family, particularly to Michael. The poetic style of the descriptions, the creative lists of deeds or things (e.g. these hands) are like songs. And there is the unquestionable love that keeps this family grounded through their ordeal and keeps Claire going on as the overworked and stressed caregiver to Michael in their home.
We learn that Michael is a determined, charming, humorous and athletic person. His family and his many friends have helped to form him and continue to keep him part of the community despite his physical challenges. In her eulogy of Michael, Verney notes, “the Michael Torontow award was established [by the Chelsea Oldtimers’ soccer club] for spirit, perseverance and dedication to Chelsea soccer.”
But, to think that all you need is love would be oversimplification. Verney demonstrates repeatedly that you also need a huge share of devotion, persistence, hard work, a sense of humour and a rational, analytical mind. Her background, first in post-war England, then in Canada as a child moving from town to town for her father’s work as a teacher/principal, contributes to her independent, resourceful and feisty personality. Her formation as a devoted caregiver and decision-maker owes as well to her experience raising and home-schooling four children, admittedly in Chelsea, where such an activity is not as rare as it might be elsewhere.
A favourite part of the book, demonstrating Verney’s analytical approach to decision making, is her formalized debate with herself in the entry of January 24, 2012. She describes her recurring internal debate, “Be it resolved that Michael’s care is better at home than in a care facility. Arguing volubly ‘For’ is Claire the Ardent Caregiver. Arguing ‘Against,’ with far less conviction to make a cogent argument on her own behalf, is Claire the Tired Wife.”
Verney’s observations on the role of the medical profession offer some noteworthy insights, such as, “Medical folk do their best in difficult circumstances but often have to rely on sometimes spotty information.”
Can this memoir be of help to readers? Probably, and not only to those living with Parkinson’s disease, but with any chronic, debilitating illness. It should be noted, however, that Michael’s case of Parkinson’s is particularly long and complex, and that the final years of his life are unusually difficult given complications resulting from other medical events such as stroke. The choice Verney made to care for her ailing husband to the end may not be within the capability of others; it was an arduous, often lonely vigil. Yet, family, friends and neighbours stepped forward to offer specific help, sometimes asked for and often without asking.
I hope the author, who now lives in the Glebe, enjoys a less complicated and stressful life. She deserves it.
Teena Hendelman, retired educator and researcher, is a past chair of the Glebe Report board. Her husband, Walter, a neuroscientist, added to this review.