(Originally posted May 25, 2023) Guided by Love: Navigating a Mother with Memory Loss, a new book by award-winning jazz pianist and author Sarah Cion that includes poems with artful drawings by her mother, Elizabeth Heller, is a tour de force. Its power and appeal draw deeply from a wellspring of human sensitivity and compassion, as aptly denoted in the title. The love object in this case is Sarah’s 83-year-old mother, diagnosed with Alzheimer’s disease.
In her narrative, Sarah navigates unanticipated problems fraught with conflict, frustration, resentment, joy, and personal validation; emotions unveiled that are at the heart of the stories. The book raises difficult existential questions about the culturally unspoken moral imperative that adult children care for aging parents as roles reverse precipitated by illness or disability.
The lifelong bond of love, commitment, and reverence between Sarah and her mother draws the reader into authentic engagement with mother and daughter. We are invited into a healthy voyeuristic role; one that examines the frustrations, revelations, disappointments, and joys that are the DNA of authentic parent-child relationships. The logical empathetic dilemma after reading Guided by Love is the question: “What would I do if it were my mother or father?”
After Sarah’s mother receives the clinical diagnosis, a troubling reality sets in. Beloved mother, Elizabeth, by her very nature, is a free-spirited, attractive, personable, and vibrant individual. Hers is a life well lived, enjoyed on her own terms, and imbued with a joie de vivre that appears to be vanishing into a maze of impaired cognitive capacity with each passing day. Like a deadly virus, Alzheimer’s suddenly threatens and erodes her quality of life. Memories, familiar faces, and experiences that once comprised the fabric of Elizabeth’s life and their shared traditions seem to wither to a thin thread of common ground. The disease destroys the loving connections along with so many precious memories that normally stabilize intimate familial and human relations.
The book’s storyline is presented in concise descriptive soliloquies, artfully woven through its 107 pages, and accompanied by poems and sketches created from day-to-day experience lived out by the author’s naturally vivacious and inquisitive mother. Sarah eloquently frames a number of significant family events, weddings, divorce, a new sibling, love affairs, deaths, alienation, child rearing, single parenthood and the battle for independence and social mobility. This is a tale of nostalgic memories now as effusive as ghosts, both sweet and those that fester and haunt.
Sarah and her mother share a mutual love of music, art, nature, and seem to enjoy people of all stripes. Each of them, at different life stages, has pursued an irrepressible quest to embrace beauty and peace in their vision of love and being loving. Despite the “vanishing” nature of something that once was, each strives to find her own new creativity in place of sinking into a mire of despair, contempt, or self-absorption.
Each chapter expands the story. Sarah, as primary caregiver, and her core team of other hires and supporters learn daily to maintain healthy equilibrium, while each embracing the inevitability of their own vulnerability to impatience and flights of solemness. Both caretaker and mother experience gleeful and painful episodes that span the patient and caretakers unpredictable yet dwindling days. Alzheimer’s has been called the long goodbye. Those most intimate with Elizabeth in physical proximity and emotional receptiveness rely on trial and error to establish common connections using stories, photo albums. They accept her need for frequent repetition, attempting to avoid over correction and just listening. This is an episodic narrative of a life well lived yet not without vicissitudes, personal failures, joy, celebration, brokenness, and healing; experiences that underpin our shared human frailty, reinforcing how similar we all are as we encounter our own and others aging process and mortality. Sarah’s optimistic tone throughout lends to the thematic core guiding us toward love as key to any semblance of restoring full equilibrium when human ties that bind fade with Alzheimer’s relentless progression.
The book offers a sort of “how to” with practical solutions referencing well-researched self-help tips. In that respect, Guided by Love serves as a primer for memory-loss care for both novice support providers and those more experienced but near burn-out. Coping strategies enumerated in the substantive appendix target day-to-day problems and offer suitable solutions. Sparce use of clinical jargon or behavioral analysis allows for practical steps and strategies that work toward ameliorating the conflict and anxiety that accompanies bad days for all parties, in this instance a mother and her caretakers. Avoiding technical babble and preachiness, the author offers a Resources section at the end for handy reference to expert therapeutic organizations and services.
Throughout, Guide to Love remains a highly personal journey shared in by a loving mother and daughter. Sarah Cion has courageously chosen to communicate raw, spontaneous emotion, risking the vulnerability to present this engaging saga artfully in real time. The goal in part is to shine a light on the brazen, often brutal, psychological stress fostered by prolonged caring for one predisposed to cognitive dissonance, progressive memory loss, and altered inter-relational dynamics. Emotional fatigue, frustration, miscommunication, impatience, tolerance, hope, burn-out, and self-care with consistency, all dynamics touched upon, are perspectives that characterize both victims and care givers need in varying degrees. The book’s pages are designed to engage readers who are caregivers in an internal dialogue of self-discovery.
I appreciate this book on many levels. I journeyed through a similar maze of experiences with my own mother, an esteemed singer of sacred music for more than 60 years, who also had Alzheimer’s disease in her final years. Also, I am a jazz vocalist and I met Sara Cion as a music collaborator twelve years ago.
Sarah has established a career as an esteemed jazz pianist of impressive accomplishment. A graduate of New England Music Conservatory, she won the 17th Annual Great American Jazz Piano Competition held in Jacksonville, She brings the same passion and meticulous concern to artistic expression to Guided by Love as she does to performing, teaching, and improvising on complex musical arrangements. Her capacities to delve deep within in search of her truth are hallmarks of her as both author and musician. As a singer, I found her piano accompaniment and mentoring supportive, intuitive, and insightful, all qualities expressed in the contours of Guided by Love.
Perhaps the Forward contributed by her father, a psychiatrist, sums it up best: “This book is for anyone who is caring for a loved one with dementia. It provides practical advice and guidance, but it also offers hope and inspiration. It is a reminder that, even in the darkest moments, there is still light to be found.”
Dennis L. Day
