Some baby boomers might secretly have believed they would be eternally young, but they are growing older after all and are now facing the physical decline and losses that come with aging. Many have or will become caregivers for parents or spouses, and there are a notable number of books—especially from religion and spirituality publishers—that aim to guide and inspire them as they face some of life’s toughest experiences.
Of all of the ailments that can afflict older people, perhaps the most feared is Alzheimer’s disease. The problem looms large: according to the Alzheimer’s Association, approximately 5.8 million Americans are living with Alzheimer’s, and more than 16 million Americans provide unpaid care for people with Alzheimer’s or other forms of dementia. As medical advances keep people alive longer, the demands on caregivers become even more complicated, and books now address the practical, emotional, and spiritual challenges they face.
Caregivers are often husbands or wives, and in The Alzheimer’s Spouse: Finding the Grace to Keep the Promise (Acta, out now), Mary K. Doyle writes of struggling to care for her husband, Marshall Brodien. A magician best known for his character Whizzo on The Bozo Show, Brodien first showed signs of the disease 15 years ago, and since then Doyle has wrestled with both its practical and spiritual aspects. “Caring for a loved one with Alzheimer’s requires us to act selflessly,” she writes. “No matter how painful, we must put our own feelings aside.”
Doyle asks and answers one of the most painful questions for her and many other caregivers: how can a wife or husband remain committed to their vows when the person they married is no longer there? Few couples reflect on the implications of promising to stick together in sickness and in health, she writes; “We realized there would be unhealthy days somewhere in the future, even expected them. But we never prepared for the terrorist known as Alzheimer’s disease, which may even have been an uninvited guest at our wedding. It was at Marshall’s and mine.”
Doyle, a journalist and author, published a book in 2017 for all caregivers, Navigating Alzheimer’s: 12 Truths About Caring for Your Loved One (also from Acta). In The Alzheimer’s Spouse, she delves into issues specific to couples, including the effects of Alzheimer’s on sexuality, finances, and the caregiver’s health, as well as the guilt and loneliness that come with watching as the mind of one’s beloved spouse slips away while their body lives on. Her faith supported her in caregiving, Doyle writes, quoting a prayer traditionally attributed to St. Francis of Assisi: “Grant that I may not seek so much to be consoled as to console; to be understood as to understand; to be loved as to love.” Marshall Brodien died as The Alzheimer’s Spouse was going to press; Doyle hopes the book will comfort other caregivers who suffer the predations of the disease.
In the Lingering Light: Courage and Hope for the Alzheimer’s Caregiver by Cynthia Fantasia (NavPress, July) also illuminates the cruelty of the disease and the ways faith can sustain the exhausted caregiver. Addressing her late husband, who was lost to Alzheimer’s, she writes, “Alzheimer’s robbed us of our future. There were no more memories to make together”; however, she notes, “while Alzheimer’s disease shortened our time to grow old together, eternity now holds a new and personal significance.” Fantasia—a pastor at Grace Chapel in Lexington, Mass.—includes stories of others grieving such loss and instructs readers, “Don’t expect to have no tears, to have a constant smile on your face, to have it all together all the time. In a time of grief, be real with yourself, be human, and be still.”
Harvard psychiatry professor and medical anthropologist Arthur Kleinman began caring for his wife after she was diagnosed with early-onset Alzheimer’s disease, and in The Soul of Care: The Moral Education of a Husband and a Doctor (Viking, Sept.) he writes of discovering that caregiving transcended his medical training and presented not only practical but also moral and emotional demands and unexpected lessons. “I learned from Joan: from who she was as a human being, from her care for me, from the carer she helped me to become,” he writes. “[Caregiving] is often something we would rather not do; at times truly unpleasant; sometimes taking more than it gives; something that can break us. It is also among the most important things we can do. It starts out about others, but in the end it is about us... [transforming] the soul of care into care of the soul.”
At some point in their lives, many will need to care for aging parents. Devin Maddox, trade book publisher for B&H, says, “Caring for an aging parent, and their caregivers as well, is an issue we don’t discuss with one another nearly often enough.” B&H hopes to contribute to the conversation with Coffee with Mom: Caring for a Parent with Dementia by Mike Glenn (June).
Glenn, senior pastor of Brentwood Baptist Church in Brentwood, Tenn., writes, “My mom is funny and tough. Growing up with her made me the man I am; taking care of her was the most difficult and joyful experience of my life.... She continued to fashion me into the man she wanted me to be, even when she was too sick to make sense of it all.” Glenn is also the author of In Real Time and The Gospel of Yes.
Like families, congregations also will experience the impact of Alzheimer’s. In Ministry with the Forgotten: Dementia Through a Spiritual Lens (Abingdon, Sept.), Kenneth L. Carder—professor emeritus at Duke Divinity school—writes of the scale of the threat: “A typical mainline congregation with a membership of two hundred will include seventy who are sixty-five or older. Of that number, seven will have Alzheimer’s disease. Add the members of the family who are significantly impacted by those seven people and the effect on the congregation grows.”
Drawing on his own experience as caregiver for his wife, Carder cautions churches against the tendency to reduce people with dementia to projects for ministry, rather than including them as full members of the congregation. When dementia sufferers really belong, he writes, “The church is transformed, and [congregants’] lives are enriched.”
Jamie Tyrone learned through a genetic test that she has a 91% chance of contracting Alzheimer’s. A former nurse with a family history of the disease and experience as a caregiver, Tyrone knows what the future might bring. She has partnered with medical researcher Marwan Sabbagh to write Fighting for My Life: How to Thrive in the Shadow of Alzheimer’s (W, out now) and became an Alzheimer’s activist, raising awareness and funds for research.
“More than fifteen million family caregivers help someone with Alzheimer’s disease or other dementia,” Tyrone writes. “Perhaps you are one too—or about to become one.” She doesn’t minimize the demands: “Many times through this journey I have been challenged, enduring pain and anxiety that sometimes seemed unsurmountable. My faith was part of what got me through it.... That faith also helped me realize that instead of a genetic death sentence, I’d actually been given a gift. Today, I wake up every morning knowing I have a purpose in life.”
Sabbagh—director of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas and author of The Alzheimer’s Answer and The Alzheimer’s Prevention Cookbook—is engaged in new studies on Alzheimer’s and notes that through organizations such as the Alzheimer’s Association and advocates such as Tyrone, “We are now seeing the kind of interest, support, and funding that is critical to scientific progress.” Tyrone is a founding member of Maria Shriver’s nonprofit Women Against Alzheimer’s and has a place on its Big Wall of Empowerment, which honors Alzheimer’s activists.
Molly Wisniewski emphasizes the importance of self-care in the midst of caring for a loved one in Caregiving Both Ways: A Guide for Balancing It All While Caring for a Loved One with Dementia (Mango, Aug.). Dealing with the often-chaotic emotions of an Alzheimer’s sufferer can be difficult—they might be confused and frustrated and unable to communicate. “Older adults with various forms of dementia are not behaving in a certain way because of their diagnosis, but instead, they are communicating with us in a new way,” Wisniewski writes. She urges caregivers to pay mindful attention and learn to speak their language.
Rowman & Littlefield has several titles coming that, while not exclusively focused on Alzheimer’s, deal with challenges common to all caregivers. In The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver (June), Donna Thomson and Zachary White write that they hope “conversations between caring families, friends and health professionals may be enriched and informed by the truths revealed in this book,” which includes “stories and experiences that have existed in the shadows far too long.” The book, they note, explores “what happens to us when we stay, when we care, when we turn toward—not away—from our loved ones, and how deep care for another transforms us and our relationships.” PBS Newshour anchor Judy Woodruff, who has been honored for her work raising funds for research on Alzheimer’s disease, provided the foreword.
Thomson is a consultant and speaker on family caregiving, disability, and aging and is the author of The Four Walls of Freedom: Lessons I’ve Learned from a Life of Caregiving. White is a university professor who teaches courses on topics such as caregiver communication and health and illness narratives.
Also from Rowman & Littlefield, Parenting Our Parents: Transforming the Challenge into a Journey of Love by Jane Wolf Frances (Sept.) addresses children of Alzheimer’s patients who suddenly find the relationship with a parent reversed. Psychotherapist Frances writes that she created Parenting Our Parents, an online community, “because I wanted to support you and others like you to manifest your vision of POP love and loyalty.” She notes, “By being part of this new POP community, we are positively altering the face and character of our nation in how we treat our aging population.” Frances adds that she hopes the book will inspire “more joy in the lives of you and your loved ones and our nation.”
Caregivers dwell in the tension between meeting their own needs and the needs of their loved ones—a conflict explored in Working Daughter: A Guide to Caring for Your Aging Parents While Making a Living by Liz O’Donnell (Rowman & Littlefield, Aug.). “I attempted to balance caregiving with motherhood and career,” O’Donnell writes. “I wrote this book in the hopes that I could turn my family’s crisis into your family’s road map.” She also calls on business leaders and policymakers to recognize and accommodate the needs of those caring for loved ones.
Tending to a loved one who is dying is the topic of several books that illuminate both the costs and the joy that can come with accompanying someone to the end of their life. In the Mystery’s Shadow: Reflections on Caring for the Elderly and Dying by Susan Swetnam (Liturgical, June) explores the spiritual and emotional gifts she gained from caring for her husband, who died young of cancer. She writes, “Those who persist with faith in the vocation of caring for the elderly and the dying, who are open to learning and to inspiration, will encounter inevitably in themselves and in others the most marvelous innate human capacities... for selflessness, for tolerance and forgiveness, for courage, and for trust.”
After 30 years as an English professor at Idaho State University, Swetnam began a second career as a licensed massage therapist working with hospice patients, the elderly, and the bereaved—and their caregivers. She writes of how the touch of massage comforts and reassures the ill and dying: “When we do not shrink from the ravages of disease, we affirm that the decline of the physical body does not diminish essential, innate human dignity, that the soul is always a glowing thing.” She urges those who care for the sick and dying to see the sacred in their work. “As we show those we serve by our calm presence that we do not fear death, we demonstrate our abiding hope in eternal life, our trust in what we cannot see.”
For a nuts-and-bolts guide for Christians who want to make biblically based end-of-life decisions for family members, Crossway has published Between Life and Death: A Gospel-Centered Guide to End-of-Life Medical Care by Kathryn Butler (out now). Butler—a trauma surgeon, lecturer at Harvard Medical School, and surgery consultant at Massachusetts General Hospital—writes, “To honor God in the bleak setting of the ICU, we must clarify the expanse between life and death that our medical advances have blurred. The shift of dying from the home to the hospital challenges us to acknowledge the capabilities and limitations of the technology upon which we lean, and to embrace it in a fashion that keeps the gospel in focus.”
Balancing medical technology with the patient’s emotional and spiritual needs must be considered “through the lens of heaven,” Butler writes. “We must unravel the jargon and the statistics and appraise them against the clarifying light of the Word.”
Kirsten DeLeo offers guidance and inspiration from a Buddhist point of view in Present Through the End: A Caring Companion’s Guide for Accompanying the Dying (Shambhala, Aug.). “Death touches us all,” writes DeLeo—a therapist, teacher, and trainer with the Spiritual Care Program, which offers education on caregiving in 11 countries. “Accompanying the dying, whatever our role, challenges us to be authentically and compassionately present and, ultimately, to look into the mirror of death ourselves and face the uncomfortable truth of our own mortality.” She notes that this can be a transformative experience: “When we are with someone who is dying, we are challenged to be present even though we may feel powerless, to stay when we want to run, to love while loss is just around the corner, and to be fully alive to every moment as time is running out. Daring to be present might be the hardest thing we have ever done in our lives; and, we may come to discover, one of the most intimate, beautiful, and rewarding.”