Book Review: Broken Fragments: Jewish Experiences of Alzheimer's Disease through Diagnosis, Adaptation and Moving On

reviewed by Rabbi Goldie Milgram, this article was first published in the Philadelphia Jewish Voice

I wish this book would have existed when my mother yet lived. Edited by Douglas J. Kohn, Broken Fragments: Jewish Experiences of Alzheimer's Disease through Diagnosis, Adaptation and Moving On (URJ Press) would have greatly expanded our family's ways of interpreting, understanding and coping with my mother's years with Alzheimer's disease. Even though she died almost three years ago, it was healing to have each chapter facilitate retrospective tears, laughter and thoughtful reflection.

Eighteen contributing authors address the volume's core question: "How might family members help the person accept the diagnosis and learn to live with its ongoing challenges?" Each chapter offers helpful perspectives and relevant skills, grounded in Jewish values, text and traditions. The authors are united by their experiences with Alzheimer's disease in their own parents, extended families and work in the field of Jewish chaplaincy and medicine.

Clarity through Jewish Values

The initial symptoms of Alzheimer's tend to be apparent only in retrospect. This means that family and friends are often delayed in realizing that a parent may be covering up emerging cognitive deficits, often unconsciously. When we are careful to stay kind and supportive without being patronizing, acting annoyed or putting them down, the ground is laid for dignity and healthy coping strategies. The early onset of Jewish values can help families get through the process of care, loss and remembering with fewer regrets. This is the Jewish way, as Rabbi Paul Kipnes demonstrates in his chapter subtitled "Community as Support and Validation,"

"In the midrash, Rav Joseph teaches 'that the second set of tablets of the Ten Commandments and the broken tables [that Moses shattered upon discovering the Golden Calf] were both kept in the Holy Ark. From here we learn that a scholar who has involuntarily forgotten his learning should not be treated disdainfully.' Kal vachomer, how much more so it is vital that our loved ones, those who like the broken tablets still retain their holiness, continue to be held closely by us, by their caregivers, and by God."

Rabbi Kipnes also provides us an approach to coping with the inevitable loss of memory:

"Where the person cannot remember for herself, we will remember with her and for her...We can be that beacon of light that provides a sense of safety and security, and a sense of connectedness. We can replace lost memory with unending love."

I wonder about this, for while it is a helpful guiding aspiration, it is superhuman to be a consistent "beacon of light" while struggling to deal with losses and burnout.

The Language of Dementia

In "Early Responses: Talking to Dementia with Its Own, New Language," Rabbi Bonnie Ann Steinberg provides us with invaluable anticipatory information, by teaching us to appreciate that those with dementia aren't being bad, they are in a different relationship to reality. She emphasizes the importance of releasing attachments to social conventions as she describes her:

"… friend's dad, a lover of ice cream, ate bowl after bowl, trying to mix it with is napkin, his body forgetting that he had eaten enough ice cream, forgetting that the white napkin was not part of the white ice cream. We let him have his pleasure…The good time is still worth it even if he won't remember it."

It's true that, at each new normal, there can be good times. I recall having signed Mom out for a drive. Once we entered farm country, she suddenly began repeatedly pointing, as though counting something, while marveling aloud, "Amazing.  Amazing!" "What is it, Mom?" I asked. She replied: "Look. Look at what's been invented! They are so clever these days." What was I missing? Could it be that she's pointing at each of the…"Mom, do you mean the cows? Those are called cows." She didn't look clued in at all.  So I tried again, in Yiddish, the language of her childhood. "It's a beheima, Mom. A beheima." She began giggling and quickly rejoined with, "I was just tricking you, honey. Of course it's a beheima.I see them in my room all the time." We both laughed hysterically at this.

Entering Their World: Methods and Ethics

Trained chaplains with supervised experience know how to listen to people well beyond what is on the surface; this is the great gift they have to teach us – how to listen deeply to ourselves, and others. During the poignant stage when self-awareness still resides, Rabbi Sheldon Mardur in "Doorways of Hope: Adapting to Alzheimer's" brings us a related concept from the psychiatrist Milton H. Erickson termed "joining the patient." This means "entering his world, trying to feel what he feels, expressing yourself in his language." The Mardur gives is of a text study, a poem where those with Alzheimer's as well as some of the caregivers, find meaning and support in the metaphors that allow them to better "embrace a part of ourselves we tend to deny." This also affords a reduced sense of isolation, illustrated by a Judy who reports: "…that's me. That's exactly how I feel. It's like the phones are cut off. I'm always forgetting everything. Thank you. Thank you. It was so good to hear everyone talk about their feelings."

Citing the Biblical example of Isaac being deceived in passing on his legacy to the son he'd not intended it for, Dr. Ronald Andiman brings a neurologist's perspective to the vulnerability of those with Alzheimer's to error and deception. "People with dementia…use poor judgment when they lack capacity and the consequences often are painful..." This is where the volume tangentially alludes to, but doesn't outright state the critical need for advance estate planning and family briefings about end-of-life preferences and the mitzvah of organ and tissue donation. Keeping an eye on finances and tax issues, supporting the healthiest possible family dynamics is a major task, along with the odd little stresses that arise.

An example of an odd little stress that I vividly recall, was as a young child, watching my aunt wrestle my grandmother's three-diamond engagement ring off the finger of a resistant thirty-something aide to whom my 96 year-old grandfather declared he had become engaged. Was she right to do that, take the ring back? At all?  In front of grandfather? Among several helpful sources, the author provides this text for our consideration: "When R. Eliezer was asked, "How far is a man to go in honoring his father and mother?" he replied, "So far that, should his father take a purse of denars and toss it into the seas in his presence, he would not put him to shame." --Babylonian Talmud, Kiddushin 32a"

Memory

Rabbi Elyse Goldstein is frank about the "painful, truly painful" experience of when "your mother doesn't recognize her own grandchild." Each transition, each layer of self and civilization as the disease causes these to be shed, can be difficult to acknowledge and witness.

My hardest day was when Mom looked in the mirror and asked: "Who is that woman?" planting her forefinger onto the reflection of her own nose. She didn't recognize herself. "That's you Mom—Libby!....Mom….it's YOU…Mom? Mom! Oh, no!!" I quickly slipped down to my sanctuary, the basement, there gesturing wildly in grief while crying and ranting: "It's not fair! Dear God, I want my Mommy back…" Until, eventually emptied of pain and rage, I could again pray for strength and refill with spirit.

Among the many therapeutic comforts to be found in this deeply touching volume, I loved Rabbi Goldstein's way of permitting us to reframe our experiences. She writes: "Put personally, it doesn't matter who my mother was; it matters who I remember she was." She guides us toward memory that "is cast in a pleasant sepia tone of a romanticized past, that beauty helps me now retain the image of her as beautiful."

Rabbi Goldstein notes that when she leaves the nursing home after a visit to her own mother that she has "…taken an oath, that my mom will be remembered even if she doesn't remember. To remember and to be remembered are precious gifts, but they are different gifts...to be remembered is altogether possible."

Dimensions of Shifting Awareness

Those with Alzheimer's often checkout into long vacuous periods, only to shock us by occasionally emerging to make fleetingly articulate contact. Where do they go? Rabbi Michele Brand Medwin, in "Alzheimer's and the Soul: A New Perspective," suggests that at such times a dimension of the person's soul is already "with God."

Towards the end of life many enter into apparently satisfying encounters with deceased ancestors. Rabbi Mardur offers a unique take on this occurrence; he even deems it a form of applied memory:" …I could not help but wonder if there was something more specific happening deep inside Hannah. The more I listened to her, the more I thought there might be. As I told her daughter, I could feel Hannah's soul turning to the most reliable source of comfort she had ever known in her life: the grandmother who raised her as a child. Now, in her last days, Hannah's soul "remembered" exactly what she needed. She remembered the right words, the right language [Yiddish], and the right person. Hannah had become her own spiritual healer…"

Surprising Blessings

Part III--"Moving On," gives us permission to make a new round of choices before we lose our minds, marriages, jobs and more from caregiver burn out. Rabbi Richard Address offers a helpful quote from a spouse with end-stage Alzheimer's: "I now hope I can provide an environment that will be safe for my wife, while still recognizing the need for my life to continue." The staff ratios at Alzheimer's wings in eldercare residences, where multiple hands are available to turn, bathe and to 24/7 deal with call buttons; often turn those early-on fearsome and unwanted options into necessary blessings.

Rabbi Address also courageously raises the issue of "circumstantial adultery," a practice covered up by lonesome elders. Assisted living and nursing home staff tend to vary widely in attempts to avert or support extra-marital relationships among residents. Is it really any of their business? Rabbi Address provides precedents to ground this option in holiness within Judaism, and also references an article by Rabbi Bleich, an Orthodox expert in Jewish law.  With Dad's permission, I set my parents up with rooms in separate wings at the Jewish Home in hopes he would have a chance to enjoy the community and programs offered, be able to sleep through the night, and make some new friends for his new chapter of life.

Miraculously, while mom yet lived, and dad was 87 years-old, he and the woman across the hall at Assisted Living became best friends. They'd zoom up and down the floors in their power wheelchairs singing opera arias and Kate Smith songs. We were enchanted to witness them steadily falling in love. One day I let on to knowing about this, by suggesting Dad buy his "lady friend" something for her birthday (we had already sent her flowers). He happily let me run out to a store for something nice and thereafter became comfortable including her in our visits.

Sometimes I'd enter the Alzheimer's floor to find dad's lady friend there, singing Yiddish songs to my mother. What an amazing mitzvah. She explained that she would do this every day possible, "in gratitude for the time I've been able to have with your wonderful father, with Sam."

Future Substance

There are several topics begging for inclusion in a second edition of <i>Broken Fragments</i>. First is addressing the profound fear that comes when you take in that Alzheimer's is part of your genetic legacy, and you find yourself witnessing the very ravages that may be awaiting your own person. Thoughts can churn so painfully: "Will this be my path? How will my spouse and/or children manage to care for me? Will Medicare and Medicaid be there for my generation the way it has been for my parents? At what age should I start planning?" Every bit of forgetfulness seems to herald the anticipated slide…most turn out to be normal midlife slips. One big wave of forgetting that I endured turned out, after an expensive work-up, to be secondary to menopause and caretaker burnout, it was not Alzheimer's…at least not yet.

The journey of a family and loved one with Alzheimer's requires us to appreciate the nature of trauma--that we many not be able to drive home safely after a major status change in a beloved parent, that we may not be fit to make decisions or react to staff properly until a major bout of grief or terror settles down.  This volume would do with a chapter on how to appreciate the power of trauma and ways to handle the effects.

Seeing a parent in pain can be unbearable – I can still scarcely believe that I, a professional, screamed at an inexperienced young hospice nurse one day. I was dad's designated guardian angel, and zealous to a fault, when really, by that point so close to the end of his embodied journey, I needed help, too. The angels that arrived– my sons, also my first husband and my present husband took shifts for a "dad" they'd come to love, as did dear friends and amazing colleagues. It is a mitzvah to allow others to do mitzvot (pl), too, albeit not so easy for some of us to relinquish control.

Accompanying a dear one through personhood dissolving illness is a brutal experience. The compassionate, well-informed perspectives provided throughout Broken Fragments are, unfortunately, difficult to access in many healthcare systems. I encourage you to supply copies to every affected family, synagogue libraries, nursing homes, life long learning, hospice and healthcare training centers.

Love, longing and mitzvah – are poignantly and helpfully revealed in Broken Fragments: Jewish Experiences of Alzheimer's Disease through Diagnosis, Adaptation and Moving On, brilliantly edited by Rabbi Douglas J. Kohn. May we be blessed to fund, research and discover a cure, bimheyra v'yameynu--quickly and in our time.

Note: I first wrote this review for the Philadelphia Jewish Voice, where it appeared in Sept. 2012.