A few weeks ago, Time magazine included a short essay that caught the eye of several of us here at Community Catalyst. In “The Coping Conundrum,” author Nancy Gibbs gently, but insistently, spotlights the unique issues faced by Americans in the sandwich generation — those among us who are simultaneously raising kids even as they are pulled deeper into caring for our aging parents.
“As they age, our parents need constraints, but the context shifts,” writes Gibbs. “Just as with teenagers, we put limits on their freedoms: No, you can’t wear those heels, drive at night, explore that city alone. But this involves taking away freedoms they’ve had, not preparing them for new ones. […]If you are a wife, mother and daughter or son, father and husband and all those ties are pulled taut, you are no longer a net. You are a sieve, and the first thing to slip through is peace of mind.”
Gibbs points to statistics from just one illness — Alzheimer’s — to illustrate the impact care giving has on family members’ lifestyles, relationships, and even career opportunities. Citing the Shriver Report, she states that one in every three caregivers reports being “responsible [for providing care] around the clock — and four in ten say they had no choice about taking on the role.” Over a third of family caregivers struggle with depression, and 40 percent say care giving strains their marriage.
This is troubling, and it speaks volumes about the way our current health care system works — or doesn’t — for the frail elderly, many of whom have one or more chronic illnesses, and the people who love them. Ironically, incentives in many states actually work against keeping people in their homes and communities, pushing them into institutions like nursing homes. Not that nursing home care is an easy solution. As Gibbs notes, Medicare doesn’t cover long-term care services, and “you have to burn through your savings to qualify for Medicaid [which may cover long-term care].” In addition, many providers don’t routinely coordinate patient care with one another. That burden falls to patients and family caregivers, who may get conflicting diagnoses and treatment plans without the benefit of a point person to help them make sense of it all.
All of this makes for a system that’s disjointed, confusing, and frustratingly complex. None of it makes for easy care giving.
That’s not to say there are no bright lights shining. Tomorrow, November 17 marks the launch of the “Year of the Family Caregiver” — a year-long celebration that will recognize family caregivers for all that they give, and all that we ask of them. (It’s also the 10th anniversary of the National Family Caregiver Support Program, created by the Older Americans Act to support family caregivers.) And, the Affordable Care Act (ACA) includes a number of provisions intended to improve the way patients — and their family caregivers — experience care.
Despite politicians’ midterm posturing on the ACA, there’s no question that we need to take advantage of the opportunities it presents to address what’s not working well for patients and family caregivers. Red state, blue state, purple, green — no matter what the political landscape looks like, focusing on what’s not working for our ever-aging population and the people who care for them is one issue that should cross party lines. To quote Nancy Gibbs, “If anything should be a postpartisan issue, this is it. Liberal or conservative, we all get old; we all care about the people we love; and in the years ahead, the support needs to come without being summoned if our families are going to stay strong.”
After all, we’ll all be there, someday.
— Jessica Curtis, Integrated Care Advocacy Project and the Campaign for Better Care