Caring Connections Vol11 No3 - Book Review: Goff

Book Review

Where Two Worlds Touch: A Spiritual Journey Through Alzheimer’s Disease

By Jade C. Angelica

Reviewed by Bradford Goff

For the newcomer to Alzheimer’s Disease, encountering this relentlessly progressive and deadly disease is always at first like the colliding of worlds - known versus unknown, health versus disease, hope versus despair, life versus death, faith versus darkness.

Book cover: Where Two World TouchSo, when a book comes along that addresses this life-shattering disease, such as When Two Worlds Touch: A Spiritual Journey Through Alzheimer’s Disease, one certainly must admit there is something immensely appealing that such a notion can come out of this shadow-filled “valley” called Alzheimer’s.

In her sad but sweet, learned, and ultimately inspired guide for entering the “valley" - with an invitation to follow and potentially come out at the other end kinder, wiser, and more spiritually fulfilled - Rev. Jade C. Angelica takes us through her very personal ten-year experience as caregiver to her mother during her course with Alzheimer’s disease, to her death. Rev. Angelica, who has a Masters of Divinity degree from Harvard Divinity School and is founder and director of the Healing Moments Alzheimer’s Ministry, is clearly a wise and caring theologian but also a skilled researcher, teacher, writer and expert in this field of Alzheimer’s study and treatment.

For any of us who may be dealing with parishioners, patients, or loved ones – or might read this book because we too may someday suffer this affliction personally – this book is always soundly based with up-to-date information about the illness and is filled with well-annotated quotes and references to many clinical and spiritual experts in the field. And, although the disease still remains terminal for all, this book’s core premise that this can be a life-filled and rewarding process from the beginning to the very end – for both caregiver and Alzheimer person – obviously has profound health and spiritual implications for any reader. Even though never sugar-coated in its messages, this easily readable, intentionally lay-oriented book is designed to reduce anyone’s deepest fear of even opening the cover. But it never shies from the reality that this process is long, painful, frightening, infuriating, at times fraught with helplessness and even despair, and ultimately requires compassion, acceptance, and surrender, before reconciliation. But still for the caregiver, family member, and loved one, there is promise herein for the potential rewards and greater appreciation of life’s mysteries, in spirit.

Clearly, the facts of this still poorly understood disease are not easy to hear. There are currently estimated to be 5.2 million Americans of all ages with Alzheimer’s disease, and future projections remain staggering: an estimated 7.1 million by 2025, and then between 13.8 million to 16 million by 2050. Clinical studies have led us to several highly suspicious proteins that accumulate and produce abnormal plaques and clumps in brain cells of the majority of victims, but strangely not all. Genetic makeup is proving to be a profound contributor, which may ultimately guide researchers to identify pharmacological “silver bullets.” But even the most promising of drugs in stage 2 trials fail to reduce cognitive decline compared to placebo. However, one study does support reasonable improvements in cognition and global functioning in patients with mild disease, which inspires hope. But with such mixed data, drug companies are reluctant to continue research in the face of equivocal findings, even on potentially promising drugs, given massive costs of clinical trials. This begs for widespread advocacy to continue all efforts.

The author with her motherWe are still far away from anything akin to a cure. Yet, as Rev. Angelica aptly points out in one of her early chapters, there can be “healing when there is [still] no cure.” How can this be? To find this out, she had to not only make her way to a “healing” for her progressively deteriorating, terminal mother, but also a personal healing. Not an easy course, as she had lived in a family where her mother was continuously alcoholic, often ungiving, and critically rejecting for years into the author’s adult life, leading Rev. Angelica to sever ties for many years. She discloses her history of alcoholism and recovery, entry into the ministry, and pursuit of her personal, professional, and spiritual journey as her mother’s illness was diagnosed and required increasing attention and intervention. Hers was a big decision to risk re-opening old wounds and re-engage in her mother’s life, at first long-distance in Boston. But, after a surprisingly loving reception from her impaired mother, she made an even riskier choice to return to Iowa to oversee her mother’s care during the final three years of life. The choice was life-changing for her and ultimately paved the way toward discovering “healing” interventions.

She introduces us to some tools that helped her engage a person in progressive cognitive decline, with failing organized thinking, memory, and the verbal skills for logical expression. Despite cognitive losses, still present were the myriad of wild emotions and responses to ongoing everyday life experiences and the same wide array of internal reactions and drives, just without cognitive boundaries - sadness, joy, gratitude, libido, anger, fear, rage, hurt, and love. The challenge was how to be with these feelings in the moment and promote meaningful engagement, even a deepening love.

Rev. Angelica happened upon improvisational theater techniques as a means for connecting in positive ways. She teaches us that improvisation is about “accepting the offer that has been extended to you by your scene partner, considering it valid, and then doing or saying the next logical thing.” Furthermore, “no-saying” can more often than not be “blocking the offer,” leading inevitably to “a very bad scene.” By implication, the "dance of yes and no" in dealing with a person with Alzheimer’s, perhaps most clearly represented in our common clinical intervention of “reality orientation” for persons with dementia, may not be the most helpful approach, “as it is about changing people and correcting people.” And “being constantly corrected is annoying.” How profound, and simple, and begging for practical implementation in the theater of life!

This book is filled with dozens of simple yet profoundly wise examples, demonstrations, and creative improvisations that beautifully provide affirmations to persons profoundly impaired, but still profoundly human, and worthy of all that they might want and need each day of living. Rev. Angelica writes, “learning that saying yes in the context of Alzheimer’s is not necessarily about agreement or approval. It’s about adopting an attitude of acceptance and affirmation.”

This is a story of hope, inspiration, beauty, dedication, and finally spiritual love.

The author joins other experts in dispelling the notion that the person with Alzheimer’s is “gone,” an empty vessel, and therefore useless. Clearly, this may be true from an economic standpoint, so the Alzheimer’s person may easily be seen as a burden on family or society. But she points out, “If a person is considered ‘gone,' spending limited time and attention elsewhere becomes an easier choice. How I wish everyone could see what I see looking back at me from the sea of wheelchairs: beauty within vulnerability, in-the-moment happiness, gratitude for any kindness, earnest efforts to engage in life at every opportunity, and especially for Mom and me, celebration of one more day together.”

This book, in many ways, is a full celebration of life in all its aspects. It is about the unpredictability of life, anticipation of the good future, hope for health and recovery, healing of old wounds, getting desperate news, appreciating the present, deepest loss, absolute helplessness, complete surrender, sorrow, precious memories, forgetting, forgiving, reconciling, and moving on. There are no points left untouched in this self-less, giving, and uplifting tribute and memoir – which would seem from its simple title to at least offer some basic tips in making it through one of life’s most challenging and devastating disease processes, a grueling endurance test where life just leaks away, leaving nothing in the end. No such thing! This is a story of hope, inspiration, beauty, dedication, and finally spiritual love. One can only be left thanking Rev. Angelica for this gift to us all - loved ones, family members, caregivers, present and future persons with Alzheimer’s - all of us. She lifts us up with her dedication, inspiration, and spirit.

Bradford M. Goff, M.D., has served as chairman of the Department of Psychiatry and Behavioral Health Sciences of Lutheran Medical Center in Brooklyn, NY since 2001. Throughout this time period, Dr. Goff has also served part-time at a private practice of psychiatry. He is also a consulting psychiatrist with Calvary Hospital. Prior to joining Lutheran Medical Center, Dr. Goff was the director of Inpatient Psychiatric Services at North General Hospital. Dr. Goff received his medical degree from State University of New York, Downstate Medical Center and completed an internship at the Baylor University Medical Center in Dallas, TX, with residency training at the Timberlawn Psychiatric Hospital in Dallas, TX. Dr. Goff is a Distinguished Fellow of the American Psychiatric Association, and is a member of the New York District Branch of the American Psychiatric Association, the Medical Society of the State of New York and the American Society for Emergency Psychiatry. Dr. Goff is Board Certified in Psychiatry and Neurology.