A memoir dealing with Alzheimer's Diease, as well as mother-daughter relations and the immigrant experience.
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There was, in my parents’ album, a photograph which, as a child, I both admired and feared. It showed a beautiful young woman dressed in a dark suit and soft angora sweater; a black-and-white femme fatale wearing a diamond brooch and a felt hat with a white, audacious feather. It was my mother, but a mother I was barely acquainted with; a glamorous stranger who held me in her complex spell for years. Not that I was unaccustomed to seeing my mother elegantly turned out, but this photo – it had been taken in Lodz, around 1950 – suggested infinite mystery and hauteur. It had captured an aloof, Greta Garbo-like persona with crayoned lips and narrow, voracious eyes that bespoke both hunger and danger.
I don’t know which I found more unsettling, the hunger or the danger, but have since come to marvel that the postwar Polish photographer had managed to capture two essential facets of my mother’s being. The photograph itself I have not seen for some three decades; had all but forgotten it, until one autumn day two years ago when my mother, the wife of a millionaire, came over after a shopping trip to the Salvation Army. She seemed pleased with herself, as she always did when she found a bargain. She had found several that day: a plastic basket in which she could keep her purse safe from potential snatchers; a grey knitted suit – an old lady’s outfit – for my teenage daughter; a pleated pink wool skirt for me, and – the piece de resistance – a black velvet hat which, she delightedly reported, the cashier had let her have for fifty cents! The hat was ancient and a little moth-eaten, but its white feather may have reminded my mother of the elegant black hat she had worn back in Poland. It reminded me of it, and the contrast between the two hats – the two personages – seemed all too emblematic of my mother’s mental decline.
It was l997, and, aged 76, my mother was apparently a victim of Alzheimer’s disease. I say apparently because Alzheimer’s can be definitively diagnosed only after death, when an autopsy determines the presence of characteristic lumps known as neuritic plaques, accompanied by layers of tangled neural fibers. Until then, a tentative, 90%-accurate, diagnosis is reached by neurologists through a process of elimination and confirmation of familiar behavioral patterns.
Though memory loss does not in itself signify the presence of Alzheimer’s, it is the first symptom to manifest itself. My mother did not know the name for her affliction, but she frequently lamented the fact that her memory was not what it used to be. She often forgot the names of people she knew, and of objects, and had at some point begun having difficulty recognizing people. One day, she failed to recognize a neighbor who had moved away barely a month earlier; someone she had known for over a decade. She was also growing increasingly confused. In the supermarket, she sometimes addressed the cashier in Russian; she called my daughter by my own name; she kept misplacing objects. The common assumption that Alzheimer’s victims are spared knowledge of their own affliction may apply as neural damage becomes pervasive, but not necessarily in the early stages of the disease, when victims are often distressed by the cruel awareness of their own recurring failures. My mother alternately expressed dismay at her own blunders and made light of them: you did not reach the age of seventy, she would bravely state, without some impairment. Ever the optimist, she was certain some doctor would surely be able to offer help.
I made an appointment to see a neurologist at the Montreal Neurological Institute. The Institute is affiliated with the Royal Victoria Hospital, an institution to which my mother had been making generous financial contributions for years. When I took her there for tests, therefore, she insisted on first seeing the hospital director, who would surely see to it that she got the prompt and personal attention she deserved. She had his letter of thanks in her bag, promising the best care available.
The director was fortunately away, but my mother was given a CAT scan to rule out the possibility of a malignant growth, and was interviewed at length by a Dr. Michel Aube. Though her responses and conduct left little doubt about her condition, she was also sent for an electroencephalogram, a procedure which measures and records brain waves. Obediently, almost eagerly, my mother followed me to the hospital’s basement, to lie down in a small cubicle, her head seemingly sprouting a web of red and blue wires. Beyond a glass partition, a young technician sat at a paper-spewing console probing the secrets of my mother’s erratic brain.
“Would you close your eyes and open them only when I say, okay?” The technician spoke through an intercom.
I took my mother’s mottled hand and told her what she had to do.
“But I’m not sleepy!” she protested.
I explained she did not have to sleep – just close her eyes for a while. It occurred to me that I was echoing my own young mother at bedtime, gently steering her reluctant children toward their shared bedroom. I remembered a floral satin kimono, a smooth-skinned face wearing a familiar expression of amused forbearance. Sometimes, when one of us contrived to outwit her, the expression would change into one of determined sternness, but we could always see through it. She seemed at times torn between an awareness of her maternal role and a simultaneous longing to cast off its sober cloak and join the subversive camp of the very young. Now and then, she would find herself unable to contain her inner laughter, and it would come bubbling toward us: a high, girlish sound accompanying my brother and me to the realm of sleep.
“Keep your head still and your eyes closed,” the technician instructed. “Now open them. Open.” She repeated this procedure several times going on to flash a bright light over my mother’s head. She was to lie very still and keep her eyes shut tight. “Do you understand?” she asked.
“Yes.” My mother shut her eyes and I took her hand, feeling the fear coursing through her veins.
“It’s all right, it’s almost over,” I whispered in her ear. I noted that her pink jersey was stained over her pendulous breasts; her abdomen was a small hill with a rip at its bottom. I reminded myself there were greater tragedies. We would soon see one of them in the waiting room, on our way out of the clinic – a young man who had been in a bike accident and now could not even recall his own name. My mother, however, seemed oblivious to the young victim. The tests had been utterly painless but she seemed oddly shaken, speaking to me all the while in whispers, glancing over her shoulder. She said nothing about the purpose of our visit; she asked no questions about any of the procedures. It occurred to me that what my mother feared was the verdict concealed in all those hectic zigzags on the E.E.G. printout. She looked very small, very pale, clinging to my hand. This was when the same thought seemed to strike us both.
“A stranger would think you were the mother and I the child,” she said.
NATIONAL POST BOOK REVIEW: MEMOIR OF A MOTHER, LOST AND FOUND by Moira Farr
If you cry easily, don't read this book on the bus. Irena F. Karafilly's memoir of caring for a mother with Alzheimer's disease is vivid, tender and heartfelt. Mercifully, it relies on neither Hallmark schmaltz nor Mommy Dearest melodrama for its effects, but rather the author's remarkable ability to evoke all the complicated, at times wildly contradictory, emotions that arise as a daughter watches her mother descend into a relentless dementia that threatens to rob her of all dignity, self-awareness and memory.
Karafilly is an award-winning journalist and fiction writer based in Montreal. Her narrative is a powerfully honest account of struggling to come to terms with her mother's terrible illness. She does not, nor should she, spare the reader any harsh glimpses of life for Alzheimer's sufferers and their beleaguered families, who often feel marooned on some hellish Island of the Damned. We learn that her mother is difficult to kiss, because she frequently "smells like a chamber pot," having taken to drinking her own urine (on presumably well-meaning advice from a relative). We see the cruelties of life in overburdened geriatric institutions, where immensely vulnerable patients are often inadequately cared for, not necessarily deliberately, but due to staff shortages and mindless bureaucratic practices.
But blatant abuse still comes as a shock. Karafilly reports one instance of finding her mother trussed in her bed. "She had been strapped before, but on this occasion was wincing with pain, complaining of something cutting into her bottom. I lifted her hospital gown for a look, horrified to discover a restraint worthy of the Middle Ages; a long wire running between her buttocks, cutting into her tender flesh, keeping her not only from extricating herself but from virtually any movement." We share the author's grim pleasure when, during an outing to the smoking area, her mother for no apparent reason pulls down her diaper and defecates on the office threshold of a particularly autocratic head nurse.
Karafilly later compares the terrified, uncomprehending patients who accost her in the hallways, pleading for help in finding their way home, to the famished stray cats that once circled her when she was on a visit to Greece. It's one of the most tragic of this book's revelations about the illness - those suffering from it may have lost most of their marbles, but their capacity to experience pain and fear often remains intact until the bitter end.
Fortunately, this memoir does not simply dwell on the dreadful details of the present. Equally important, and no less daunting for the author, is the task of making peace with the past, and some sense of the complex, at times infuriating, relationship she had with her mother. How to reconcile the image of a vivacious young woman in a faded family photograph with the angry, malodorous geriatric patient her mother has become? Who was this Russian-born "shiksa femme fatale" who married a Polish Jew, had a daughter and a son, emigrated to Israel and later Canada?
Karafilly certainly does not idealize her often narcissistic, overbearing mother, and yet she emerges as a lovable person despite her flaws and failings as a parent, a woman who endured much loneliness and emotional neglect, yet met her tough life circumstances with an admirably tough spirit. We come to appreciate that the proud beauty in the plumed hat and the disoriented old crone clinging to her ratty slippers are in fact one and the same person, no stranger at all.
To write a book so integrally based on memory is particularly poignant when at the heart of the enterprise is the immutable tragedy of memory's loss. More than anything, this account of living with Alzheimer's highlights the good faith and compassion that must almost heroically be brought to bear when caring for the demented elderly. With perfect pitch, Karafilly quotes from The Unbearable Lightness of Being by Milan Kundera: "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."
Readers will not have to have had direct experience of Alzheimer's to hear some of those echoes, thanks to the lucid writing in this well-crafted and humane memoir.
THE GLOBE AND MAIL BOOK REVIEW: REMEMBERING THOSE WHO FORGET by Keith Garebian
It begins with a mother's photograph taken in Lodz, Poland around 1950, showing a beautiful though aloof young woman, "a black-and-white femme fatale wearing a diamond brooch and a felt hat with a white, audacious feather." The next image of the same woman in 1998, tells a startlingly different story. Married to a millionaire, she is now a septuagenarian, her honey-coloured hair turned gray, returning home after a shopping trip to the Salvation Army, where she has found bargains: a plastic basket for keeping her purse safe from potential snatchers; inappropriate and unprepossessing garments for her daughter Irena and granddaughter Ranya; and, the piece de resistance, a moth-eaten black velvet hat which the cashier let her have for 50 cents.
Perhaps the white feather in it reminds the woman of the elegant black hat she had worn in Poland. The contrast between the two hats seems emblematic of her mental decline, and it is dramatic enough to warrant this closely observed, emotionally coloured memoir which is more than simply the story of an Alzheimer's victim.
Using the traditional narrative techniques of memoir-writing, Irena Karafilly (nee Friedman) manages to fashion not only a vivid portrait of her Mamushu agonizing deterioration, but examines as well her own tangled relationship with her mother through non-linear episodes of strained family bonds, the immigrant experience and secrets of the past.
Agreeing with Milan Kundera (from whom she quotes) that compassion is too heavy in itself for such a purpose, Karafilly (a skilled Montreal journalist and writer) knows how to focus on the drama of interpersonal relationships beyond the clinical details of a medical record, although she does painstakingly insist on linking all her mother's behaviour to symptoms of the disease. Mamushu is evoked palpably: a bag lady who frequents shopping malls, desperate for the kindness and love of strangers so that she can then boast to her negligent husband Yasha, that everybody loves her. When prompted by a sister in Russia to drink her own urine for medicinal effect, she begins to smell like a chamber pot. The grotesque comedy is ever the more unsettling for what it betokens. There is all the awful lousiness of dementia: innumerable shrill calls for help on the daughter's answering machine; the self-caused kitchen fire that burns down the family home; malodorous hygiene; the restlessness at every sunset; a desperate appeal for a cucumber with which to cut herself free of a restraining body-belt in the geriatric ward of St. Mary's Hospital; the loss of memory; the pitiable begging to return "home," when it is unclear what "home" means to one in a mental wasteland.
The mother is not the only victim. Alzheimer's is a perfectly democratic illness that cuts across all classes, that is capable of plaguing anyone: the sexagenarian male patient who propositions the author to get into his bed; the Romanian woman who knows five languages and is the resident bookworm; the doctor's wife who still fancies herself the popular hostess of weekend parties; and, more compellingly, paranoid Madame Lafleur who, fearing a conspiracy by the hospital staff, screams out for a lawyer or politician so that she can file a report immediately.
Unable to be her own mariner in what Oliver Sacks (as quoted by Karafilly) calls "the seas of one's self," Mamushu is totally dependent on her writer-daughter for understanding, though this creates a heavy burden for Irena, who feels impotent in the sudden chaos of her personal and professional life. But while her book fails to provide a vivid geography of her own mind as a writer, it does show her quest for therapy and self-clarification. When she discovers intimate sexual secrets about her parents - her father's chronic infidelities, her mother's two extra-marital relationships - she wonders if Alzheimer's is a willful escape from intolerable truths.
The final image of the old mother comes, fittingly, on Mother's Day, when she no longer knows the word for "goodbye," though "she still smiles on being kissed and makes small kissing noises with her puckered mouth." Her trembling hand is raised to those she doesn't recognize as her family, and its semaphore only looks like a benediction.
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