This is one of a series of reflective articles submitted by the Province’s Wellness Committee. Others can be found on the HNP Web site. Sr. Vicki has been a member of the HNP Wellness Committee since it was formed in 2005.
Several months ago, a friend sent me the book Still Alice. A New York Times best seller, it is a compelling debut novel by Lisa Genova, a neuroscientist. Reviewers have given high marks to this work describing it as pure genius, insightful, tragic, inspirational and heartbreakingly real. Besides the author’s expertise in her own field, she is a gifted storyteller. Her words left me riveted from page one onward.
Genova was inspired to write the book after journeying through Alzheimer’s disease with her over-80-year-old grandmother. Thus, although a novel, all aspects of the story were, for me, true to life.
The book’s main character, Alice Howland, a Harvard University professor of cognitive psychology, is diagnosed with early onset Alzheimer’s disease at age 50. Her husband, also a professor at Harvard, and three adult children are well educated and successful in their life choices. As Alice’s husband and children accompany her through a two-year struggle, it becomes sadly apparent that the disease is relentless and leaves its mark on every station of life.
Varied Courses, Daily Unpredictability
I daresay that we all know at least one person, either in religious community or among relatives and friends who is suffering from dementia. Their condition could be due to several possible causes: a diagnosis of Alzheimer’s disease, the result of a stroke or series of mini strokes, or perhaps from severe vitamin B12 deficiency, among other possibilities. Whatever the precipitating cause, living through the progressive stages of dementia with loved ones is an overwhelming and heart-rending challenge.
As I read Lisa Genova’s thought-provoking and masterfully written work, I found myself identifying and empathizing with the daily unpredictability facing Alice, her family and her colleagues. Interestingly, the more I read, the more I seemed to experience a haunting preoccupation with one word in the book’s title: still. This word expressed to me the core message of living gracefully with dementia and its ever-saddening manifestations.
Despite the progressive deterioration that is the undeniable earmark of dementia, it is absolutely necessary for us, as men and women professing to be brothers and sisters to one another, to realize that our brother or sister who is living with dementia still possesses an inner light — what Sr. Mary Ann Weldon, RSM, calls the spark of the divine. Unfortunately, we believe often that anyone whose cognitive ability has deteriorated must also have a diminished spirit. While we may never truly know what one with dementia is feeling or experiencing, I am convinced that there is still what I choose to consider an inner beauty of soul.
Anne Henderschott, in her book The Reluctant Caregivers, speaks of the need for us to engage in “soul talk.” Despite our way of life, we are frequently uncomfortable with this type of dialogue. Henderschott points out that in her experience of caring for her mother-in-law, Katherine, it was evident that her essence or soul remained. This recognition enabled Katherine’s family to experience her as their beloved mother, mother-in-law, grandmother and, most importantly, as a child of God. In other words, she was still Katherine, even when she was not able to remember anything of herself.
Attitude of Acceptance
I also believe that we must approach our brothers and sisters who are living with dementia with the inner conviction that deep within, they are still the men and women they always were. If we do this, our actions and attitudes will reflect acceptance, compassion and loving support. By understanding that dementia is an illness rather than an embarrassing and purposeful set of behaviors, we are less likely to misinterpret our brother’s or sister’s actions, to criticize them or possibly even to alienate them. Although those living with this illness are not in possession of all their mental faculties, they may well be able to sense our acceptance … or rejection.
In his book titled Denial of the Soul, M. Scott Peck reminds us that for those with faith, there is knowledge that the soul of the individual remains, even with dementia. David Keck, in Forgetting Whose We Are calls Alzheimer’s the “theological disease” because although the disease may ravage the body, he maintains that it does not affect the soul. Scripture scholar, Fr. Donald Senior, CP, writes a commentary on Keck’s book in which he focuses in on a very poignant and noteworthy point — that although the person with dementia forgets who he/she is, God always remembers who we are. (Is. 49:14-16)
In concluding this reflection, let this be our prayer: Compassionate God, the longer I journey with my brother/sister whose visible behavior is progressively diminishing because of dementia, the more I seek the grace to find that inner spark and remember that he is still my brother … she is still my sister!
— Sr. Vicki, a resident of St. Elizabeth Motherhouse in Allegany, N.Y., provided six sources for this essay. She has contributed in the past to HNP Today.