Photo: Sylvia Aguilar, a UDW caregiver from San Diego, and her mother Alfonsina. You can learn more about Sylvia here.
When I reflect on the question of what caregivers most need, two life-lessons come to me: The first, an expression my grandmother used, the second, something I remember from my undergraduate years as a math student. When I was a child and desperately wanted some thing, my grandmother would say, “Don’t let your wants hurt you.” Instead, she would tell me, be grateful for having what I needed.
The second is a mathematical concept of necessary and sufficient conditions. The concept has to do with the truth of statements—in real life, it is the truth of two conditions.
How do these relate to caregiver needs? In the first example, it seems, caregivers are harmed by not being supported by the kinds of policies that we want. Many are harmed by not having what they need, too, including adequate financial, social and personal resources to care for themselves and their loved ones. Today’s caregivers, who are mostly midlife working women, sacrifice a great deal as they struggle to fulfill caregiving roles, roles that pull them in many directions, and that pull them thin. In the course of caring for so many other people—and in playing so many roles—they often have little room to care for themselves.
Because American society continues to pay lip service to valuing women and women’s work, these caregivers are often stressed by the tension of making do with scant resources. In fact, the economic costs of caregiving, as much as $300,000 for women who leave the workforce, leaves women making do for the rest of our lives.
As for necessary and sufficient? I am struck by how often social policy seems to focus on what is deemed sufficient—short-term, unpaid leave for certain groups of workers—yet these sufficiencies are inadequate. And public policy does so little of what is truly necessary, especially when it comes to paying a living wage to direct care workers, offering some sort of tax or Social Security credit to people who leave paid work to care for others who cannot, for some period, care for themselves.
In the face of so many needs and challenges, it is easy to feel discouraged. I know that lately, while I’ve watched the news about Ebola dominate the news cycle, I’ve wondered what it would take to draw such attention to family caregivers. Absent public policy that supports working families — including low-wage workers, parents, elders, and caregivers — we face a worse disaster. Family caregiving is not rare or unusual, its symptoms less dramatic, but its consequences are, for some, no less dire: People suffer. People are isolated, which, for some, is a lethal experience. People are hungry. People are “unbefriended,” alone in the world, with great needs for great care.
While we wait for that crisis to unfold, those of us who advocate for caregivers can do a few things to help ourselves and our constituents. Most important, perhaps, we can continue to be and offer a voice for caregivers. We can talk about what caregiving families need — and the contrast with what they now have. We can shine a light on the joys of being a loving presence to another person — and we can also shine a light on the shadows of isolation, frustration, and despair.
We can act in our communities, too, and in our own families. We can offer a kind presence to the elders we encounter — offer a ride to church or the doctor, volunteer with a local service agency, listen to people, and hear their stories. As a writer, I am also honored by the stories people share with me. Even more, I am surprised at how grateful people feel simply for being heard and understood.
None of us gets out of here alive, and few of us leave in the midst of being well. It is in our own interest to do a better job: to address needs and wants, and to ensure that every necessary and sufficient condition is met, so that good, loving care can be offered by kind people who have love to give.
About the author: Janice Lynch Schuster is an award-winning nonfiction writer, covering topics such as multiple chronic conditions, aging, end-of-life care, and hospice and palliative care.
Ms. Lynch Schuster is a coauthor of Handbook for Mortals: Guidance for People Facing Serious Illness, which received the 2012 book award from the American Medical Writers Association; and is a past recipient of awards from the Society for Technical Communicators, the Plain Language Initiative of the National Institutes of Health, and the Society for Government Communicators. She is a regular contributor to The Washington Post and an occasional contributor to The New York Times.