Becoming a family caregiver can mean a gradual assumption of responsibilities, punctuated by episodes of acute illness, falls, lapses in judgment or other warning signs. Or it can be, as in my case, a catastrophic event that changes everything from Day One. My first Day One began at 8:18 a.m. on Jan. 15, 1990, when my late husband Howard and I were in an automobile accident that left him severely brain-injured and quadriplegic. I walked away with no physical injuries; the psychic shock came later.
A few days after the accident, the neurosurgeon told me that no one had noticed a blocked catheter in my husband’s arm; immediate surgery was required. I felt as though I was watching a TV set with the sound turned off. I could see the neurosurgeon’s gestures but I could not hear a word — a typical response in such a situation, I later learned.
After months in a coma, Howard slowly regained consciousness but he was totally dependent, emotionally volatile, and with a limited short-term memory. My second Day One was the day we left the rehab hospital, when the staff told me, “You’re on your own now.” And so I was.
After several years of struggling to make this cobbled-together arrangement work at home, I began to realize that my plight was not unique — that the health care system was depending on millions of people like me to do the work of nurses, technicians, and aides without training or support. That awareness was my third Day One.
As I began to blend my professional career as a health policy analyst and writer with my personal experiences, I learned that in research and policy arenas I was an “informal” caregiver, that is, someone who isn’t paid and doesn’t really count. What a demeaning term, I thought, as if caregiving is a picnic. I joined the United Hospital Fund in New York City in 1996 to begin to change the system. I am still at it.
One of the people who made a big difference in those early years at the Fund was Gerald Wolpe, rabbi emeritus of Har Zion Temple, Penn Valley, Pa. Although I knew he was an esteemed spiritual and intellectual leader, our connection was that he, too, was taking care of a beloved spouse who had suffered a catastrophic event. On April 10, 1986, at 11:05 p.m. (these dates and times become hard-wired into our memories), his wife Elaine had two ruptured brain aneurysms. She had severe speech problems and other complications.
We shared the experience of trying to restore health and vitality to a changed but still precious partner, while feeling utter despair. He described his experience in a book I edited called “Always On Call: When Illness Turns Families into Caregivers.” At first his congregation rallied around him. Then, he said, “I began to hear disturbing advice. Over and over my congregants would tell me, “Rabbi, be strong, God will be good. … Rabbi, you give us strength. … All the while I was screaming inside for someone to help me. So it was not only a crisis of practical response, it was a crisis of faith at a time when everyone expected me to be the symbol of unwavering faith.” Being a caregiver, he wrote, “is a lonely existential challenge.” Sadly, Rabbi Wolpe passed away in 2009. Elaine survives.
Many family members, even those most deeply involved in caregiving, don’t “self-identify” as caregivers. Taking on the role of caregiver seems to but shouldn’t diminish the primary relationship of spouse, daughter, son or grandchild. But there are good reasons to identify oneself as a family caregiver, including having the right to medical information, being consulted in hospital discharge planning and finding support in the community.
At the Fund, we have created a Next Step in Care website with a series of free family caregiver guides (in English, Spanish, Chinese, and Russian), including one titled “The First Step in Becoming a Family Caregiver.” It offers practical advice about taking this significant step, including such tips as:
• Learn all about your family member’s condition; don’t be shy about asking physicians — all of them — lots of questions.
• Set limits on what you can do, think how you’ll manage your job and caregiving, and try to continue some of your previous activities. This is not selfish; it is a way to keep caregiving from overwhelming you.
• Review or create legal documents — at the very least, an advance directive and health care proxy.
• Pace yourself for the long term.
My final Day One in this saga occurred when Howard died suddenly on Jan. 1, 2007. I had to find a new identity as a widow and former caregiver. I am still working on that.
Carol Levine directs the Families and Health Care Project at the United Hospital Fund in New York City. She is the editor of “Always On Call: When Illness Turns Families into Caregivers” (2nd edition, Vanderbilt University Press, 2004) and “Living in the Land of Limbo: Fiction and Poetry about Family Caregiving” (Vanderbilt University Press, 2014). This article was written for the Center for Jewish End of Life Care (centerforjewishendoflife.org), a collaboration between MJHS (mjhs.org) and UJA-Federation of New York ((ujafedny.org.). The Center is dedicated to facilitating conversations about the physical, emotional and spiritual needs of Jewish people affected by life-limiting conditions. This column, the Next Step in Care guide and other resources are available through the Center website.