Last week, my brother and I set ourselves to the humbling task of helping another brother in declining health move cross-country. Our ill brother is in his sixties, the oldest in our group of siblings, and we moved him from one nursing home to another.
He is suffering from a progressive, debilitating disease that attacks both body and mind. We lost our father only 13 years ago, and for one of us to be seriously ill so soon seems premature, especially the funny one, the one whose spirit and personality have always been happiest, the one most likely to make light of a situation.
A large cast of caregivers appears in the first days after arriving at a nursing home: the nurse who received us, a variety of aides in vibrant blue scrubs, a physical therapist and an occupational therapist. One afternoon, a calm and friendly woman whose title I’ve forgotten asked to take a personal history.
This brother and I were not always close, especially in the last decade. I did my best. Former occupation? Saddle maker. Music? Seventies — Rollings Stones and David Bowie. Habits? Loves talk radio, NPR, liked to draw and read, metal working. Religion? No.
We were not a religious family. In adulthood, some of us have made forays into Christianity or Buddhism or both. But, as far as I know, not this brother. I’ve been mulling over that last answer for a few days. I worry that answering “no religion” might prevent the staff from engaging with my brother on a spiritual level.
A 2014 Pew Research Center study found that fewer and fewer Americans identify as religious. Belief in God has dropped from 71 percent in 2007 to 63 percent in 2014.(3) But most of us practice some form of spirituality.
In 1999, The Association of American Medical Colleges (AAMC), in an effort to educate medical providers on how to more compassionately engage with patients at the end of life, addressed the issue of spirituality.
“Spirituality is recognized as a factor that contributes to health in many persons,” they wrote. (1)
The AAMC defined spirituality as an individual’s search for ultimate meaning through participation in:
- Religion and/or belief in God
- The arts
Engaging with the belief system or ritual practice that gives your life purpose contributes to emotional and physical health. Rather than cease these practices in declining health, caregivers should help patients continue pursuits that enhance their sense of well-being.
Dr. Christina Puchalski asserts, “We should have systems of care that allow people to die in peace, to die the way they want to, to be able to engage in those activities that bring peace to them: prayer, meditation, listening to music, art, writing a journal, sacred ritual, and relationships with others.”(1)
What brings you peace? A religious service? Sitting outside, watching the snow fall? Reading, drawing, or listening to music? Does being surrounded by family make you feel safe, or does working with your hands bring you satisfaction?
Suffering encompasses not just physical pain, but the social pain of isolation and dependence on others. And suffering has a spiritual aspect — Why me? Why did God do this to me? What is the point of this?
If you encounter terminal illness in the future, what spiritual tools might help you process pain and suffering? Share those tools with family members now, while you are well.
Is someone you love facing his or her last battle? Infuse suffering with meaning by asking what you can do to provide spiritual comfort. Viktor Frankl wrote, “Man is not destroyed by suffering; he is destroyed by suffering without meaning.”(2)
Embracing the spiritual can help one navigate the bewildering change and loss of final illness. Entering into a spiritual mindset, celebrating what made life worth living and the mark we left on the world, can give us the freedom to let go.
Our sister gave us a picture to place by our sick brother’s bed, a portrait of him in good health, to serve as a reminder to the staff that the person in the bed had a history that precedes his current helplessness.
He was a creative person who drew, who found humor in everything, who worked with his hands, either in photography, or metal working or saddle repair.
He loved to fall asleep to the radio, and, until illness took it from him, laughed every day and never stopped moving.
Reviewed November 3, 2016
by Michele Blacksberg RN
Edited by Jody Smith
1) Puchalski, Christina M., M.D., M.S. uab.edu. Retrieved November 1, 2016.
2) Frankl V: Man’s Search for Meaning. New York: Simon & Schuster, 1984, p. 135.)
3) U.S. Public Becoming Less Religious. PewForum.org. Retrieved November 2, 2016.