by Rabbi Douglas Kohn
My grandfather was looking at me through empty eyes. His scruffy mustache was unmoving; he was just staring. My dad was making simple, small talk, but grandpa was just staring. I couldn’t recall then – and I can’t recall now, 20 years later – when was the last time I’d had a meaningful conversation with him.
Alzheimer’s disease and dementia does that to us: They can’t remember, while we remember the pains and losses.
Our endeavors to address health and wellness issues in synagogues and Jewish institutional settings actually result from illness and being unwell. “Health and Wellness” is the euphemism which we employ in Jewish life when we strive to understand and support one another in times of sickness and illness. I have argued for years that we are misguided; it is the opposite.
As such, among the illnesses we face, Alzheimer’s disease and related dementias are perhaps the most insidious. Cancer, which I addressed in my book Life, Faith and Cancer, bears the promise of remission. Heart disease can be treated medically and surgically. Diabetes may be addressed through diet. Alzheimer’s disease simply erodes the person and spirals his or her family in a downward descent, loss after loss. Hope is momentary. We seek transitory windows of possibility among the successive, descending plateaus, but we know that they are but teasing consolations.
My then-father-in-law, Jack, was diagnosed with Alzheimer’s disease at the same time as my grandfather. Early in his Alzheimer’s, Jack was still talkative and gentlemanly, and he and my mother-in-law, Meye, came for a visit. Although Jack was still rather high-functioning, traveling was disorienting. Thus, when I was about to play golf with a congregant, Meye suggested that I take Jack along, as he once had been a prolific golfer. I was concerned, but agreeable, so when Jack agreed and rode in my golf cart, offering clear, cogent advice on the golf grip, and lining-up and hitting the ball, I was thoroughly surprised. On the golf course, Jack’s captive mind and soul were temporarily liberated, and he was unexpectedly buoyant, spirited and self-assured. Meye could hardly believe it when I reported back that afternoon! However, it was heartrending. It was a fleeting glimpse backward at a soul that was momentarily reawakened, and which would soon retreat back to its impenetrable darkness.
Moses Maimonides (Rambam), the 12th century Spanish philosopher and physician, included in his commentary on the Mishnah a psycho-spiritual document titled the Shemonah Perakim. Maimonides argued that a soul distinguishes what is alive from that which is not alive, that the soul (nefesh) was the body in operation, and that the nefesh, the core of a person, required rational skills and knowledge. He wrote, citing a verse from the Proverbs, “‘Also, the soul without knowledge is not good.’ [Prov. 19:2] The verse teaches that it would not be proper for a nefesh to remain without knowledge and thus not to fulfill its form.” To Rambam, a person was the operations of his soul, and those operations were based primarily in reason and intellect. Thus, when a soul loses the ability to reason or the capacity to harness its intellect, it could cease to be an operating soul.
The Rambam offers a spiritual understanding of the losses from Alzheimer’s disease, especially of memory and cognitive ability. To Rambam, the soul is grounded in both knowledge and reasoning, and without either, the person sinks into something lesser. As my grandfather and father-in-law suffered depravations of Alzheimer’s disease, they relinquished their grips on reason and knowledge, and their souls tragically devolved to something lesser than human souls.
In concerns of health and wellness, dementia is terribly challenging. The number of diagnoses is ballooning, especially in the Jewish community. Presently, medicine offers no pharmacological wonder drug, nor is there one on the horizon. Healing is out of the question; wellness is relative. Our task, then, is to provide other, vital needs. For the ill person, we can offer respect and dignity, occupational activity and creative outlets. Though their minds are diminishing, their emotional beings and their spirits yet abide, and need attention and caring. For caregivers, we need to offer redefinitions: not merely respite, understanding, and compassion, but permission to live outside their former relationships, and new family and friendship structures to buttress their own vulnerable vibrancy.
Ultimately, health and wellness begs questions of illness and being unwell. As we ponder these questions, this blog invites dialogue on these sensitive issues. Especially vital and necessary is a discussion on engaging and supporting those affected by Alzheimer’s disease and dementia, a burgeoning, new frontier in the province of health and wellness.
Rabbi Douglas Kohn is rabbi of Southern California’s oldest synagogue, Congregation Emanu El in Redlands. A cancer survivor himself, he is the editor of Life, Faith and Cancer (URJ Press, 2008) and Broken Fragments: Jewish Experiences of Alzheimer’s Disease (URJ Press, 2012), as well as a speaker and contributor to journals and textbooks on themes of Judaism, illness, and wellness.