Mrs. B. puts on her finest dress and makes her way to the chapel in her nursing home, and waits for Yom Kippur services to begin. The only thing is, it’s not Yom Kippur; she’s done this every morning for months. The staff have learned to anticipate her. They give Mrs. B a half-hour to sit alone in the pews, because this calms her, making it easier to convince her that “The holiday is done now. Neilah just finished, and it’s time to come back to the dining hall to break the fast.”
“Mom can’t hear us talking right now. It’s like she’s dead,” Mrs S’s middle-aged daughter laments to me as she sits next to her mother, hunched over and sleeping in a wheelchair. On another day, at my mentor’s suggestion, I speak to the mother in Yiddish, saying, “We’re all here—Mother, Father, all the brothers and sisters and grandmothers and grandfathers—it’s time to light the Shabbes lights.” Mrs. S shows signs of response. Her face reddens and she begins to breathe vigorously. Concerned that she might be choking, I call an aid. “Oh, don’t worry, Mrs. S. always does that when she gets excited.”
A woman reminisces about the feelings of ambiguous loss she experienced during the final years of her father’s life: “Whenever I sat in the pews on Shabbat and heard the Prayer for Healing, I felt alienated. What was I supposed to be praying for? I had no idea what ‘complete healing’ was supposed to look like for him. And then when they said Kaddish, I wanted to join in. I felt like I was already in mourning for him. And I felt guilty for feeling that way.”
These three anecdotes from my own experience of working with Jewish people with advanced dementia and their families testify to the enormous needs both groups have for directed spiritual care and resources. The first two stories point to the fact that people with even advanced-stage dementia continue to have vibrant spiritual lives, even though those sentiments may be hard to reach through conventional means. The third story demonstrates how stark and complex a caregiver’s spiritual needs may become, and how easy it may be for such people to become alienated in synagogues and other Jewish institutions if there is no intervention.
The Role of Religion and Spirituality in Bettering the Quality of Life for People with Dementia
The word ‘religion’ comes from the Latin root, ligare, which means ‘to bind,’ ‘to connect,’ as in ‘ligament.’ In its broadest sense, a religious sensibility is one which allows a person to connect the otherwise disparate parts of their lives, to make meaning and sense. This sense of connection can happen both in traditional settings and in secular ones. It is a sad irony that dementia often separates people from the people, places and habits which make them feel most alive. On the other hand, religion (as well as its secular equivalents), may help people with dementia to maintain, and even improve, their quality of life.
Yet even as dementia brings suffering, it also may come certain surprising blessings. Dementia knocks out one’s inhibitions, including the one that tells us to ignore what we cannot explain rationally. Dementia may allow a person to bypass the mind’s rational “gatekeepers” and experience life with great immediacy.
This proposal to create Seivah is motivated by four assumptions, based on my professional experience and the latest research:
- People with dementia benefit enormously when they continue to lead continue to active religious/spiritual lives;
- Dementia changes the ways in which a person finds and expresses spiritual connection; the religious/spiritual needs and modes of a person with dementia are not merely diminished versions of conventional needs and modes, but rather are unique. In other words, there is a ‘spirituality of dementia.’ In some ways, a person with dementia can have a more fulfilling spiritual life because they have shed some of their inhibitions;
- Our religious and secular spiritual tradition(s) can help those who love or care for someone with dementia build their resilience and clarity in that relationship;
- The “active listening” techniques developed by professional chaplains in Clinical Pastoral Care programs, can and should be taught, in simplified form, to laypeople. giving them the tools to bring spiritual care from the hospital and nursing home into the wider community.