by Bonnie Beth Chernin

Do Not Abandon Me: Judaism and Alzheimer’s Disease

During the years my father struggled with dementia—from the early signs that began when he walked around touching sculptures in a sculpture garden, despite the clearly marked signs advising visitors not to touch; to the later years when he remembered I have a daughter but not her name; to the end stage with his gait reduced to short, slow steps, his gaze at times turned neither inward nor outward— I wish I had available to me the new book from URJ Press, Broken Fragments: Jewish Experiences of Alzheimer’s Disease through Diagnosis, Adaptation, and Moving On.

Broken Fragments, edited by Douglas J. Kohn, rabbi of Congregation Emanu El in Redlands, California, is filled with insights from rabbis, cantors, doctors, social workers, and family members of people with Alzheimer’s disease. These multiple viewpoints extend across the different stages of Alzheimer’s and dementia and reflect the array of issues caregivers and family members face. Reading this collection of essays is the literary equivalent of someone intimately whispering into your ear, “You are not alone.”

Hope and pain intertwine in these pages that do not sugarcoat the struggle of family members to treat a loved one with dignity in the face of their own frustration and loss of the person they knew. This struggle is especially poignant in the essays “Shining Through: Being a Daughter When Mom Is Changing,” “Care at Home or Care in a Home?” and “He’s Still My Father.” To read an adapted chapter from the book, see the excerpt by Rabbi Cary Kozberg in the current issue of Reform Judaism Magazine.

The book’s title comes from a Talmudic passage, “Respect the aged, because the fragments of the original tablets were preserved in the Ark with the new ones.” (Babylonian Talmud, B’rachot 8b). It refers to the broken fragments from the first set of the Ten Commandments that Moses kept after he shattered the tablets together with the Golden Calf.

Broken Fragments raises important questions about a person’s loss of memory and cognitive functioning especially when our Jewish tradition calls on us to be “a people of the Book,” where the Bible itself includes 169 references to remember. References that touch on everything from remembering the covenant between Israel and God to remembering the Sabbath Day and that we were strangers in a strange land.

Contributor Sheldon Marder, a rabbi who serves the Jewish Home of San Francisco, aptly poses the question, “What is a Jew—what is a human being—when loss of memory deprives a person of these values and wellsprings of connection?”

The challenges of memory loss and other cognitive decline are a running thread throughout many of these essays, with a variety of responses presented. Readers will find the responses that resonate most powerfully for them, but the one that spoke most deeply to me came from contributor Paul J. Kipnes, rabbi of Congregation Or Ami in Calabasas, California.

Here’s what Rabbi Kipnes offers us, “Where the person cannot remember for herself, we will remember with her and for her. We can reach out to show her that we remember her, who she was and who she is…We can be that beacon of light that provides a sense of safety and security, a sense of connectedness. We can replace lost memory with unending love.”

The path is not easy and contributor Michele Brand Medwin, rabbi of Temple Sholom in Monticello, New York, notes the current reality that “Alzheimer’s is not one of those diseases that comes with cures or helpful treatments.” She fully acknowledges the confusion and frustration of being with someone who can seem coherent and then switch to asking the same question repeatedly.

Rabbi Medwin tells of the difficulty she had with her own father in accepting that “he can be both mentally alert in my presence and then completely gone, within a matter of minutes.” She asked herself, “Where does my father go when he suddenly ‘zones out?’” Her answer came when she realized she could no longer think of his condition from a “medical or logical perspective” and turned to a spiritual approach. She came to believe at those moments “his soul visits with God, at least for a while.”

Rabbi Medwin gives a beautiful account of how this belief moved her to re-write the traditional morning prayer that thanks God for returning our soul to us after a night’s sleep. Her revised text, included in Broken Fragments, becomes a prayer about restoring a soul in the moment for someone who has Alzheimer’s disease or dementia.

Each of these 18 essays in this much-needed book adds to the compassionate understanding of caring for someone with Alzheimer’s disease or dementia. Psalm 71:9 says “Do not send me off at the season of old age; as my powers diminish, do not abandon me.” Broken Fragments offers us practical and spiritual guidance to honor that appeal, which is likely to be our own one day.