BOOK REVIEW
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The Stranger in the Plumed Hat/ a memoir
By Irena F. Karafilly. Toronto: Viking, Penguin Books Canada Ltd., 2000 (240 pages).
One of the first things I learned when I joined an Alzheimer support group after my mother was first diagnosed, is that every person's experience with dementia – and the family's experience – is different. True. But, oh, the commonalities that Irena Karafilly brings to light in this unflinching, poignant memoir of her own mother's descent into dementia!
The stranger in the plumed hat is her mother, Claudia, a once vibrant, beautiful woman who, in her seventies, falls victim to Alzheimer's disease, slipping from eccentricity into dementia. |
Too often that slippery slope is misunderstood as sheer pigheadedness. I recognized my own frustration when Karafilly’s mother refuses at the last minute to join in a Christmas celebration. "And so I quarreled with her, after first trying persuasion and eventually losing patience. I quarreled with her because, when all is said and done, it is easier to lose your temper than to consider that your mother might be losing her mind."
Only later does Karafilly realize that "when the elderly seem uncharacteristically contrary, it is often because they are apprehensive about their ability to cope."
The fire that Claudia eventually causes in her Montreal home, not only burns down the home, but begins her downward physical and mental decline – and the family's dilemma: Who will care for Claudia?
Claudia goes through two public institutions in Montreal, trapped longest in the inappropriate setting of a hospital. This is when her journalist daughter, who visits daily and becomes her advocate, begins to keep the notes that shape this memoir.
What begins as Irena’s own struggle to understand and chart her mother's mental decline ends as a vivid, haunting portrait of this extraordinarily complex Russian Orthodox woman who sought love and approval all of her unhappily married life.
It is also bittersweet love story of the difficult relationship between this mother and daughter. Karafilly admits she struggles to replace her unhappy adolescent's black-and-white portrait of her often-frustrating mother with a more compassionate one. She succeeds, but only to make the same painful discovery that Milan Kundera describes in The Unbearable Lightness of Being. "There is nothing heavier than compassion. Not even one's own pain weighs so heavily as the pain one feels with someone, for someone, a pain intensified by the imagination and prolonged by a hundred echoes."
What repeatedly hit home for me were Karafilly's clear observations of the emotional reactions of her mother, other residents, and herself as daughter and caregiver as she witnesses her mother's inevitable decline, and the grim, general inadequacies of geriatric care.
It is tender, raw and touching, and heart-wrenchingly familiar: Her realization that losing one's brain also too often entails losing all rights to one's own body. First hearing her mother pleading with visitors to undo her restraints, “Please lady, please sir!” Her distress on finding her mother disheveled hair cut too short, wearing someone else's baggy clothing. Her wish that she had a videotape of her mother as she remembered her, to show to disapproving staff or censorious residents – not from embarrassment, so much as the need to exonerate her afflicted mother, “as one might wish to do while watching a loved one act foolishly under a hypnotist’s spell.” The mixed pleasure and burden of hearing “My beautiful daughter! Only you can save me!”
Anyone who has visited a care home will recognize residents who, like Claudia, look up hopefully every time the elevator doors slide open. “My mother sits in the chair she has wheeled over, her lips ready for a smile, a kiss, should the unfamiliar face turn out to belong to someone she loves.”
There are heart-warming moments, too. Her mother’s delight on being told that Irena is her daughter. “Really? I must be your mother!” Her endless pleasure in pursed-lip kisses and ice cream. Her delight on being welcomed back by care aids after surgery, and declaring “I love everybody. Everbody!” And a wonderful scene, when strangers in the elevator join her mother in a rousing rendition of Dai dayenu, the Passover song she sings daily.
Early in the book, Irena regrets “Too late, I wanted to give her everything she had ever wanted, especially anything I myself had denied her.” The sad irony is that, because of Alzheimer’s disease, finally, Irena is able to give her mother what she had withheld since adolescence: love and acceptance.
Who should read this? As Michael Ignatieff says on the book jacket, “Any family who has been to this dark place will derive comfort and instruction from her work.” Certainly immigrant families may find a special rapport.
Karafilly is unflinching in writing of her own dysfunctional immigrant family's early life in Poland and Israel before emigrating to Canada. She remembers it all – her frequent exasperation, the embarrassment and anger over her parents ways. I loved this book, but I hesitated to suggest it to a friend already distraught about having to place her mother into long-term care very soon.
Some of the images of physical restraints in St. Mary’s Hospital are disturbing, and hopefully no longer common in long term care facilities. (I found myself wondering why the author, seemingly unsure of how to advocate for her mother, never found her way to the Alzheimer Society and support groups, as neither are mentioned in her acknowledgements.)
Review provided by Kerry McPhedran – writer, caregiver for her mother before she passed away, and a volunteer with the Alzheimer Society of B.C.
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