Introduction Dear Readers, Welcome to the second edition of Where Two Worlds Touch. I’m honored to be invited into your experience of Alzheimer’s learning and caring, and grateful for the opportunity to share with you many of the discoveries I made about life and love during the years of caring for my mom, Jeanne. My hope is that some of what I learned will resonate with your minds and hearts and make a difference for you and people living with Alzheimer’s or other diseases of dementia. The original manuscript for this book was crafted during the first two years after Mom died from Alzheimer’s. Writing it was a catharsis for me while I processed the experience of being her faithful companion, as well as an opportunity to enlighten and inspire others who are curious about Alzheimer’s disease and care. Now, ten years later, I’m grateful for the renewed opportunity to enhance the book with additional experiences and discoveries from the world of Alzheimer’s. This edition includes updates based on research since the book was first published, with expanded discussion of medications, emotional memory, and caregiver experiences, as well as more information and stories about the particular impacts of Alzheimer’s on minoritized populations. I have had time to learn more about different spiritualities and theologies that have valuable insights for Alzheimer’s caregivers and hope that readers will find them personally meaningful as well. Readers will find Where Two Worlds Touch to be like a tapestry, woven together by poetry and stories drawn from my experiences and those of other Alzheimer’s caregivers, informed by literature in the Alzheimer’s field of research, and grounded by spiritual, theological, and scientific resources. The personal stories about Mom and me, and other caregivers and their loved ones, anchor the universal aspects of my message within individual lives. One of my intentions is to remind everyone of the inherent dignity and worth of all people—even people with cognitive decline—and to reinforce the reality that interconnectedness is a central aspect of being human. We are not separate from people with Alzheimer’s. Our lives are woven together in the tapestry of life, and we are on this journey together. Although this book is the culmination of many years of academic study in a unique doctoral program called “Faith, Health, and Spirituality,” the information is presented in a style designed to open hearts and engage the spiritual imagination of readers as well as to be intellectually stimulating. The writing style is intended to be accessible for a general audience of family and professional Alzheimer’s caregivers, with the goal of sharing forward the wisdom and comfort I received from my many teachers and companions. The topics and issues I present are discussed in the context of spirituality, since this is my main area of interest and education, and my primary source of comfort and guidance—especially during life’s hardest times. I often use the words God and spirit, which have deep meaning for me. Understanding that these words have different meanings for different people, I aspire to use them in an inclusive way. Theologian Marcus Borg says that words from various traditions used to name the sacred—such as God, Yahweh, Brahman, Atman, Allah, the Tao, and Great Spirit—are “understood as that nonmaterial reality or presence that is experienced in extraordinary moments . . . . The sacred (or numinous) refers to the other reality that is encountered in these experiences.” Borg’s understanding of these sacred words resonates with my own. Early in my ministry education, I was given the opportunity to enroll in an upper-level course called “Healing Is Meeting: The Vision of Martin Buber,” taught by Professor Brita Gill-Austern. Brita became one of my professional and life mentors over the next many decades, and she was an important guide as I developed my work in the Alzheimer’s world. Her course on Martin Buber informed my worldview and planted seeds for transformation that have blossomed in various manifestations ever since. Almost fifteen years after taking this course, with Buber’s insights regarding deep spiritual meetings between people still imprinted in my mind and heart, I encountered Alzheimer’s disease. It was then that enrolling in this course felt more like Destiny than mere opportunity. Like many people, I was frightened to engage with Alzheimer’s. However, my mother’s diagnosis in 2001 beckoned me to cross the doorsill of her mysterious world. I said “Yes” and was led into surprising connection with her. Seeds of transformation sprouted, and in many ways, Mom and I met each other for the first time. Inspired by Martin Buber, one message for readers in Where Two Worlds Touch is about the power and potential of true encounter. This book is about more than the relationship between Mom and me. It’s about meeting people with Alzheimer’s and falling into love and respect for them. It’s about meeting caregivers who have learned to bear the unbearable, who demonstrate that it’s okay—even desirable—to commit to caregiving even if it means our own lives must change. It’s about recognizing our limitations as individuals and the inability of science and medicine so far to delay or cure this disease. It’s about accepting our frustrations and suffering and then opening our hearts to hope and healing as we encounter a degenerative terminal disease. It’s about the tender responsibility of becoming the legal guardian for a person who is completely helpless, and then struggling with awesome decisions about life and death. It’s about grappling with the realities of Alzheimer’s disease and the impact of these realities on individuals, families, communities, and whole societies. It’s about caregivers telling our stories and meeting scientists who will listen and help us change the world of Alzheimer’s care. It’s about understanding ourselves and our humanity—our feelings, thoughts, reactions, and beliefs—through the lens of Alzheimer’s. And it’s about discovering life-giving possibilities in every corner of life. All of these represent the “true encounters” Buber names as healing. Much that happens in the world of Alzheimer’s is about loss. And so it may surprise readers that my story is not about losing my mother while she was living with Alzheimer’s; in many ways it’s about finding her. Accordingly, my reflections on our experiences don’t focus only on the inevitable losses and grief that accompany cognitive decline; they focus also on what remains, what can be found, and what’s possible. One caregiving setting I specifically address is the often-dreaded nursing home, more recently rebranded as care centers and/or memory care units. As the time nears when it’s necessary for caregivers to move their loved ones to assisted living or nursing home facilities, it’s important to appreciate the difficulties of this life change for everyone involved. It’s an environment that we caregivers may need to return to again and again in order to fully understand and accept that this is now our loved one’s home, and to be comfortable there. It’s important to be gentle with ourselves during this transition, but also to be committed and disciplined in our efforts to overcome any resistance. Self-awareness, a critical component in the lives of Alzheimer’s caregivers, will aid us in noticing resistance and moving toward accepting what is—including the need for help. The “Spiritual Practices” section addresses the need for caregiver self-care. Family caregivers are at heightened risk for health problems and depression due to stress, self-care is essential. Self-care includes not only practices like relaxation and exercise, but internal skills of emotional self-awareness and acceptance. Caregivers are strongly encouraged to give themselves permission to care for themselves as well as for their loved ones; self-care may just be our saving grace. As part of my research for the book, I interviewed Mary Anne, a family caregiver. After this book was first published, Mary Anne and I met for lunch. The day before, she had read the story I wrote about her relationship with her mother, Ione, to her husband. He asked if what I wrote were my words or Mary Anne’s. They were her words, of course. He expressed some surprise about Mary Anne’s self-awareness and her depth of feeling about her mother’s illness and decline. Mary Anne replied, “It was really helpful to talk to Jade about what I was feeling. No one had asked me these questions, so I hadn’t actually thought about it before.” Since pondering these questions increased Mary Anne’s self-awareness and was so helpful to her, I have included them in the section “Reflection Questions.” If other caregivers feel inclined to explore their own hearts and minds, they may choose to use these questions as a guide. For more than twenty years, I have been immersed in rich learning about Alzheimer’s disease and caregiving. Combining my academic inquiry, my experience as a spiritual director and my personal encounters with people with Alzheimer’s and their caregivers, I write as a spiritual companion for family caregivers and anyone who loves someone with Alzheimer’s. Where Two Worlds Touch is unique among Alzheimer’s resources in that it describes the experience of caregiving through the lens of a spiritual journey—revealing how this challenging experience has the potential to lead us through Alzheimer’s into healing and wholeness. By embracing people with Alzheimer’s with open hearts, compassionate presence, and holy vision, it’s possible that caregivers on this sacred journey will bear witness to the transforming power of Alzheimer’s, as I did. It’s also possible that caregivers will notice and receive unexpected gifts and experience awe and gratitude for the ways that Alzheimer’s can touch our hearts and transform our lives.