First Place:Rabbi Regina Sandler-Phillips
"Wandering in The Wilderness"
"The Eyes and Hands of Love"
"Supporting the Alzheimer's Community"
WANDERING IN THE WILDERNESS:
Responding to Dementia in Our Religious Communities
Rabbi Regina L. Sandler-Phillips, MSW, MPH
One Saturday morning, 87-year-old Morris (not his real name) was accompanied by his home health aide to a nearby synagogue, where he was expected to stay for the duration of the Sabbath service. Unbeknownst to his aide and unnoticed by the other worshipers, Morris soon left the synagogue, boarded a bus with his walker, and traveled several miles to a synagogue in another part of town.
When he arrived, Morris was disoriented and a bit agitated. There was a large Bat Mitzvah celebration in progress, with many people he did not recognize, and he was unable to find a place to sit in the back of the sanctuary. Fortunately, many members of this synagogue knew Morris. His son, daughter-in-law and grandchildren were active members of this congregation and, although Morris had not been seen for several months due to his various health conditions, he was still considered part of the community.
Several congregants were juggling other responsibilities, but they took turns reassuring Morris, accompanying him to the bathroom (where he subsequently declared that he didn’t need to be), staying and talking with him in the vestibule (gently encouraging him to lower his voice). One congregant called Morris’ son, who happened to be on his way to the synagogue and had no idea how his father had gotten there. When he arrived, Morris’ son was clearly frightened. Although his father’s mental state had been deteriorating, he had not wandered off like this before.
My friend Beulah was a vibrant, adventurous, independent woman for most of her 89 years. We met in 1984 as two generations of community activists, committed to the empowerment of women and families in the neighborhood of which she was a lifelong resident. Beulah was also very loyal to the people she loved, and our friendship continued over two decades as I left the neighborhood, moved overseas to Israel, and returned to New York. Beulah proudly attended my rabbinical ordination, although she was unable to hear most of the proceedings (due to the combination of a faulty sound system and her own diminished hearing).
Characteristically an upbeat person, Beulah was disoriented by periodic bouts of depression in her later years, and ultimately began showing signs of Alzheimer’s disease. Since she was aware of her own deteriorating mental state, this was acutely painful to her as well as to those who loved her. Even so, she continued to demonstrate affection along with moments of remarkable clarity. During one of her stays in a psychiatric inpatient unit for evaluation, as her daughter went off to make arrangements for her, she reflected philosophically: “There is a time at which the parent becomes the child.”
At other times, Beulah struggled with her descent into dementia. While she was still living her own home, I came up to sit with her and, when I could not reassure her, simply bore witness to her strange, desperate attempts to regain some measure of control through repetitious, improvised rituals that might involve the grasping of seashells, roadmaps, or wallpaper. Her efforts gave me a renewed, poignant insight into the words of Psalm 77:3—“In my day of trouble…my hand in the night reaches out and will not rest; my soul refuses to be comforted.”
Beulah and I were both good walkers, and we used to spend hours walking together—mostly up and down the streets of her neighborhood; once from Grand Central all the way down to Greenwich Village. Even at the age of 81, Beulah cheerfully walked a mile in the snow after a blizzard, visiting her cousin’s daughter who had just given birth at Mount Sinai Hospital. Years later, in the dementia unit of a nursing home, I wandered with Beulah as we walked up and down the hallway. She tried to call her long-deceased parents from the payphone; she wandered among her lethargic and less mobile fellow residents in the day room, trying to communicate and connect with them. I no longer tried taking her outside for some fresh air; it only exacerbated her frustration at not being permitted to wander further.
Biblical self-identity is intimately bound up with wandering. The founding Hebrew families wandered the ancient Near East, and the faith of the Israelites freed from slavery was tested and reinforced through 40 years of wandering in the wilderness. In anticipation of reaching the Promised Land, Deuteronomy 26:5 instructs us to offer the first fruits of our bounty with the declaration: “A wandering Aramean was my father, and he came down to Egypt…”.
While wandering may be symbolic of spiritual redemption in our Scriptures, it can be life-threatening for those suffering from dementia—60% of whom are expected to wander at some point during the course of their disease. The Alzheimer’s Association warns that, if a wandering dementia patient is not found within 24 hours, there is a 46% risk of death due to dehydration or hypothermia.
“A wandering Aramean was my father, and he came down to Egypt…”. In Hebrew, the word for Egypt is Mitzrayim. It is a word that invokes narrow straits, a place of bondage. The Mitzrayim of Alzheimer’s disease and related dementias locks the bondage of slavery together with the prospect of ceaseless wandering: the body may be free of pain and oppression (at least temporarily), but the mind is lost in a perpetual wilderness. The identified adult self dies, often long before the body. Unlike the rejoicing that generally ensues when one’s child becomes a parent, there is often extended despair and unresolved grief—along with exhaustive vigilance—when “the parent becomes the child.”
Closely related to Mitzrayim is meitzar, the narrow distress invoked in Psalm 118: “From the meitzar I called to God…”. Here, however, there is cause for hope: “…God answered me with spaciousness” (Psalm 118:5). For those of us who believe that God works through human beings, the challenge becomes: How can we do God’s work to enlarge the constricted space of patients and their caregivers who are suffering the effects of Alzheimer’s disease?
According to those who have pioneered responses to this challenge, what we don’t do can be as important as what we do. Nancy Ledoux, Pastoral Care Coordinator for Hospice Care of Stoneham, Massachusetts, working with the Health Care Ministry of the Archdiocese of Boston, advises against reading long passages of Scripture, offering complex spontaneous prayers, or giving long sermons or lengthy explanations about the meaning of suffering. Most needed are patience, acceptance, and the gift of simple presence.
It is important for religious communities to have a basic understanding of Alzheimer’s disease and its impact. This most common form of dementia strikes one out of every 10 individuals over age 65, and nearly half of all those over age 85. It is a progressive degenerative disease that can take years to run its course: those afflicted live an average of eight years following the onset of symptoms, but can survive as long as twenty years. While short-term memory and normal cognitive functioning are ultimately destroyed by the disease, those suffering Alzheimer’s generally retain the ability to relate through simple, familiar activities; reminiscence, music, and opportunities for emotional expression. All of these are well within the capacity of our religious communities to provide.
Morris was fortunate. His initial wandering led him back to a congregation that could embrace him as well as his family caregivers. Soon after his son arrived, Morris was sitting happily in the back of the sanctuary with yet another congregant who knew and accepted him, while others reassured his son or returned to their previous participation in the service. The spirited singing of familiar congregational melodies increased Morris’ sense of security and belonging. Following the Bat Mitzvah ceremony (which had proceeded smoothly and without interruption, thanks to the discreet, impromptu response network in the back of the sanctuary), the rabbi was briefed as to Morris’ condition, and was able to coordinate her own pastoral care outreach to Morris and his family with the caring community efforts of her congregants.
An African proverb teaches us that “It takes a village to raise a child.” In the same light, when “the parent becomes the child,” it takes a village to sustain our elders and those who care for them. Community support systems are critical for family caregivers as well as for Alzheimer’s patients themselves. As Morris’ experience demonstrates, the awareness and involvement of the religious community as a whole in providing support helps to insure that the burden of care—including care for the caregivers—does not fall solely on the shoulders of our already overextended clergy and congregational officers. Spiritual leadership in this area can and must be shared, for the benefit of all concerned.
Equally critical are alliances with other mutual aid and professional resources, such as the local chapters of the Alzheimer’s Association, which help to insure that even the best congregational support networks are not strained beyond what they can be realistically expected to provide. Just as Joseph encountered an anonymous guide when he wandered unfamiliar fields in search of his brothers in Genesis 37:15-17, religious communities at times need to look beyond their own intimate relationships in order to broaden and integrate their circles of care.
For those still living with dementia in their own homes, enrollment in the Alzheimer's Association Safe Return® identification program provides protection against the dangers of unsupervised wandering. Safe Return® operates around the clock, with the nationwide involvement of law enforcement personnel and local community support networks, to locate missing Alzheimer’s patients and to reunite them with their caregivers. The Alzheimer’s Association also sponsors and disseminates information about support groups, educational programs, and research.
Even when arrangements are made to keep Alzheimer’s patients in their own homes as long as possible, there comes a point at which institutional care may be the best option. Here again, our religious communities can be sources of support and information in making these difficult decisions. One synagogue member who had recently brought her mother up from Florida to the dementia unit of a local nursing home reached out to Morris’ son and daughter-in-law, sharing her own experiences as a family caregiver who had already evaluated many of the options now before Morris’ family.
Beulah weathered a number of institutional transitions before she was settled into a nursing home near her daughter’s place of work. Advances in medication and technology, along with her daughter’s regular presence and vigilance, allowed Beulah to live out her days with the least restrictive limitations on her movement. Like Joseph’s anonymous guide, the nursing home staff offered a watchful eye along with many a well-timed intervention and reassuring word. I found myself bearing witness to the critical services of these hardworking attendants as I visited Beulah, not as a rabbi but as a longtime friend, sharing time and unanswered questions with her among the other resident wanderers of her floor and facility.
The ancient Israelites wandered the wilderness as a community. There is much ground yet to be covered in the prevention and treatment of Alzheimer’s disease and related dementias, and we are far from the Promised Land. But as we bear witness to what is ultimately in God’s hands, we can reach out our own hands to comfort, support and protect those afflicted by this disease within our own communities.
During one of our long walks together, in the days when Beulah was still her lucid self, she confided: “I can’t do a lot of the things I used to do—but I know that I’m loved.” May the commitment to love guide all of us as we journey together, tracking the wilderness of response to those suffering from Alzheimer’s and related dementias in our midst.
Rabbi Dayle A. Friedman, “When Someone You Love Needs Long-Term Care.” Jewish Lights Publishing / Life Lights Pamphlet Series, 2000.
Nancy Ledoux, M.Div, and the Office of Health Care Ministry, Archdiocese of Boston, “Ministering to Persons with Alzheimer’s Disease and Related Disorders.” Available online at www.bostoncatholic.org/Offices-And-Services/Office-Detail.aspx?id=12644.
Dedicated to the blessed memory of my dear friend,
Beulah Minkoff (January 11, 1915-October 27, 2004)
Rabbi Regina Sandler-Phillips holds master’s degrees in social work and public health, and has served as a chaplain and educator in a range of acute and long-term care, hospice and community settings. She currently works primarily through Ways of Peace Consulting and Educational Services, and is completing the manuscript for her book SACRED UNDERTAKING: Jewish Acts of Kindness with the Living and the Dead.
© Copyright | 2006