Understanding a Caregiver's Journey: A Review of Where Two Worlds Touch
Reverend Dr. Jade C. Angelica introduces us to her approach to caregiving for people with Alzheimer’s by reminding us that it is about “the power and potential of true encounter.” That “true encounter”, inspired in many ways by Buber, Heschel, and a host of others, is a motif that is unpacked in her readable and informative narrative about her personal journey with her mother. Where Two Worlds Touch: A Spiritual Journey Through Alzheimer’s Disease joins a growing list books and articles that have begun to address the growing challenges to families and society that are emerging with the aging of the baby boomers.
The number of cases of Alzheimer’s is expected to rise from the current five million, to an anticipated fifteen million by mid century. As Angelica points out, and as every statistic also confirms, we face a major challenge in that there very well may not be enough trained caregivers to handle this surge in cases. Who will take care of us, and who will pay for that care, is a societal challenge that, for the most part, remains ignored. This has the potential of being one of the major social justice issues in the next few decades.
Angelica hints at this challenge within the context of her highly personable account. What the reader will find here is someone who understands the complexities of caregiving and the special and highly personal reality of someone living with Alzheimer’s. The emphasis on “living” is a key one in the book. This is not a book that leaves you depressed and fearful. Rather, one can sense a respect for life throughout the pages. This approach may be due, in part, to Angelica’s training as a minister and a spiritual director. There is a deep reverence for life, no matter at what stage.
In the section on “The Value and Beauty of Every Person,” one of Angelica’s distinct messages is presented through metaphorical wonderings about the meaning and purpose of the lives of the cognitively impaired, and an invitation to readers to consider the counter-cultural possibility that persons with Alzheimer’s have not lost their soul or their “self.” Inspired by the work of Baylor University Gerontologist, James Ellor, Angelica challenges those who describe persons with Alzheimer’s as “empty shells,” to come close and to stay long enough to recognize that people with cognitive loss, who can’t read or speak, may still have a thing or two to teach us. Realizing that this sets up a contradiction for most, the author offers that “contradictions are often the greatest teachers of all…Consider this possibility: Rather than being useless, people with Alzheimer’s and dementia could be our most important teachers in the school of love and life.” (p.75,76) This possibility is explored throughout the book, but specifically in the later section, “Nourishing Compassion.”
Love and life form the foundation of an appreciation of what Angelica sees as a relational approach to caregiving. She sees in these encounters a sacred opportunity for meaningful encounters and lessons that can be learned. No one is “useless”, no matter at what stage of life they are. A key in this journey of caregiving then is the on-going relationship that one must maintain with the person needing care. Angelica moved her life from Boston to Iowa to care for her mother, faced her own demons and fears of a past family of origin issue, and found a sense of calling in her mission. That relationship allowed a new sense of love to grow, even as cognition declined. As she writes: “Since love and relationship, more than cognition, define who we are and enliven our beings, I offer this alternative, inclusive, everlasting definition of selfhood: I long to give and receive love—therefore, I am.” (p.102)
Angelica does understand that Alzheimer’s is, for now, a terrible and terminal diagnosis. There is a struggle to find a sense of meaning in this reality. She looks at this in her section on “Healing When There Is No Cure.” I am reminded often when these discussions take place of the prayer in the daily Jewish prayer that states that Jews pray for “healing”, but not a cure. It is as if the authors of this prayer understood that a “healing” can take place without an actual cure. Angelica examines this in her discussion on the spiritual dimensions of caring for someone with Alzheimer’s. Is hope possible in a situation where there is no “hope?” She channels a sense that every person has value, no matter at what stage of life, and that rather than seeing “hope” as an external possibility, hope is from within. Conscious and compassion-based caregiving can be the source of that hope. It is manifest by presence, by touch (she mentions the values of compassionate massage) by being present with the person where the person is, and all of this embraced by the power of love. We can “be hope” for someone by these actions and our presence, and in doing so, we can make a difference in this person’s life.
Angelica raises the issue of time as it reflects upon the caregiving journey. She makes the point that Alzheimer’s allows for the gift of deepened relationships and a more profound appreciation of time. The challenge, of course, is that not everyone who is in the position of caring for a loved one with Alzheimer’s, has the ability, insight, and sensitivity to see in this journey; a journey that can encompass years—a sacred possibility. This takes us back again to the need for a major educational program that would address the challenges of caring for someone with Alzheimer’s and dementia. If the statistics are true about the expected rise in cases and the fact that Alzheimer’s related causes are one of the most frequent causes of death in this country, then there is a great need for a major program of awareness. Part of that program needs to include, as the book suggests, a comprehensive approach to self care. The stresses and strains of caregiving, the impact on a caregiver’s health, both mental and physical, is a growing concern to all communities. It can even be argued that we need to create a new vocabulary that better describes the life stage that surrounds the person and the family that is dealing with this issue.
Where Two Worlds Touch is a moving and personal description of one person’s journey of caregiving. It is uplifting and sensitive and, in subtle ways, raises deeply challenging questions for a society that is aging.