By Margaret Morganroth Gullette
Thursday, March 28, 2013
In caregiving, not enough has changed since the 19th century. Feminism must put age issues--affordable long-term-care insurance, more geriatric training in med schools and a campaign of anti-ageism--higher on the agenda.
Credit: Jeff Tidwell on Flickr, under Creative Commons (CC BY 2.0).
(WOMENSENEWS)--Millions of American women--most in their middle years, still working--are now caring for sick or frail relatives or friends. Most of us, and some of the men we know, will probably do so at some point during our lives. Whatever we have been led to believe about "progress," this situation is in overwhelming ways the same grievous situation that women confronted in the 19th century.
Our loved ones--our "patients," also in the millions--have chronic conditions that require assistance; and we have to manage their care without training. This caring continues to be mostly provided, as it was in the 19th century, at home, by women--you and I, the "informal caregivers"--who mainly have to learn on the job, soon after the shock of discovering that a loved one has a permanent, perhaps life-threatening, condition or a frail state of health.
We are anxious, fearful and ignorant, like our loved ones. Long-lived women, in particular, have mostly been healthy all of their lives. They are more taken aback than we are by their decline, fearing loss of independence, coming closer to the end.
When my mother's strength, sight and cognition started to decline in her 90s, no ophthalmologist, geriatrician or psychiatrist had anything to offer. She and I were as much on our own as if we lived in 1859, and I had not studied even first-aid since the sixth grade. We were home alone with a box of expensive pills and drops, labeled "morning," "noon" and "night," irritating and mostly useless.
Even people who know little about the great 19th century health activist say, of any woman who throws herself whole-heartedly into a difficult and prolonged medical situation, "She was a Florence Nightingale." Enormous numbers of us are, now, Florence Nightingales.
This vast public-health emergency means feminism must put age issues higher on its list of demands. The United States needs affordable long-term-care insurance, more geriatric training in med schools and a campaign of anti-ageism.
In the meantime, we have Nightingale to guide us. Despite her historical limitations, because of her experiential advantages, she could serve as our patron saint today.
Nightingale was a brilliant, intuitive nurse who possessed a second gift of making her points trenchantly. But this is only part of what makes her book, "Notes on Nursing: What It Is and What It Is Not" (1859), usefully--shockingly--relevant today. Published 150 years ago, the book anticipates our era of chronic illness.
I picked up "Notes" as a historical curiosity, without expecting it to have much to say to us--we moderns, who no longer leave dirty chamber pots under the bed. But even her remarks on hygiene or pain relief can improve our thinking about "bedside care of the sick." Although we know more about hygiene than Nightingale's readers, she knew more about "invalids." She didn't believe in intuition; she knew caregivers could learn better ways of being, starting with rote behaviors, and how to feel more empathetically. Beginning with our own initially fevered minds, the right learning has a calming effect.
"The well do not understand the sick," Nightingale writes in her book. She is particularly wise about the silent meditations of a patient who is bed-ridden, worried and bored. "Remember he [her patient is always "he"] is face to face with his enemy all the time, internally wrestling with him, having long imaginary conversations with him. You are thinking of something else."
She wanted to inculcate respect for their state. "Believe me, almost any sick person, who behaves decently well, exercises more self-control every moment of his day than you will ever know until you are sick yourself."
One by one, her lessons train us to think through the particular subjectivity of the person we must learn to know as she too adapts to her new state.
Nightingale is scarcely the last word on learning how to become a good caregiver. She is only the first. Feminist ethical philosophers, psychologists and gerontologists have much more to teach us, once we realize that learning may lift millions of us from the bottom-most slough of despondency. Learning empathy turns serving our patient into an act of kindness for a friend.
What familiarity with the 19th century situation most of all teaches though, infuriatingly, is how little has changed since the bad old times.
In Nightingale's time the major chronic illness was tuberculosis or syphilis (rarely mentioned, but a major killer of men). No cures existed and death was preceded by years of caregiving. The chronic illnesses of our time are different--diabetes, hypertension, heart disease, stroke, AIDS, Parkinson's. Most are manageable. But they too, along with frailty and cognitive impairment, have no cure, and our caregiving can endure for years. Over four years, on average, for each of us.
When Nightingale served in the Crimean War, it was a period before women were permitted to study nursing professionally. (Nurses in Civil War hospitals were men, such as Walt Whitman.) Now, women make up the majority of nurses, but the rest of us are still unprepared for this difficult life-course necessity.
We erroneously--rather glibly--declare that today Americans are historically fortunate because we may have on-call technology, antibiotics, surgeons, doctors. But even if we have financial access to these features of "modern medicine," most address themselves to acute care.
In many ways, doctors too are as unready as in the 19th century to deal with chronic care. Medical schools still primarily train young people to deal with acute illness. In an era of longevity, they are not taught geriatrics or anti-ageism. They are unprepared psychologically to deal with the incurable ailments of later life.
"GOMERS" ("Get them out of my emergency room") is the term for sick and frail old people made famous by the novel "House of God," which despite its blatant, lethal ageism is still read by medical students across the nation. Meanwhile, state and local governments are trying to reduce long-term spending by shifting costs from nursing homes to the home and community settings that "consumers" say they want. This might work out well for some patients, but it doesn't necessarily mean more help for us.
President Barack Obama, in his second inaugural address, said America shouldn't have to "choose between caring for the generation that built this country and investing in the generation that will build its future." He rightly wants to protect the beneficiaries of Medicare, Medicaid and Social Security, but caregivers should also join the roster of our national concerns.
One by one, with dedication, we may change ourselves to become better nurses, but that is no solution to this political emergency, with all our safety nets under attack. When will our cries for help be furious enough to reach the ears of the high and mighty in Congress?
Margaret Morganroth Gullette is the author of "Agewise: Fighting the New Ageism in America," which won a 2012 Eric Hoffer Book Award. She is a resident scholar at the Women's Studies Research Center, Brandeis, near Boston. "Agewise" will soon be published in paperback.
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