If you have a parent who’s having health problems, and you don’t live close by, you may have had some variation on this phone conversation:
“How did it go at the doctor?”
“OK, I guess,” says your parent.
“Any answers? Did the doctor have idea what the problem is?”
“I’m not really sure. I think they’re going to run more tests.”
“What about the tests they’ve already run? Did you get results?”
“No, not yet.”
“Why not? Are they not ready?”
“I don’t know. I didn’t really understand what the woman said.”
“What woman? The doctor? The receptionist?”
“She might have been a PA.”
“What was her name?”
“Barilla? Barillo? It was a brand of pasta.”
“So what’s the next step?”
“I don’t know.”
So reassuring, right? I’ve had variations on this conversation now with two generations of my family—my grandparents and now my parents. From a day’s drive away, these conversations can bring me to tears. I’ve tried to swing into action with phone calls and letters of my own, but HIPAA means no one will tell me anything. My family members were left waiting for their next appointments to try to figure out what was going on, except they attended those next appointments alone, too.
My parents are at the leading edge of the baby boom, and I’m a member of the “sandwich generation”—we Gen Xers who perhaps had our kids a little later than our parents did and now find ourselves caring for small children while also caring for—or in my case, worrying daily about—our parents. The country is entering an eldercare crisis, writes Ai-jen Poo in her wonderful book The Age of Dignity. As the boomers age, the country is going to be faced with a very large population of elderly people who may need just a little help—cooking and cleaning, and perhaps driving or company to doctor’s appointments—or who may need a lot of help, like round the clock care. The reality is there aren’t really that many systems for helping elders who want to avoid the nursing home in favor of “aging in place,” which the Centers for Disease Control defines as, “the ability to live in one’s own home and community safely, independently, and comfortably, regardless of age, income, or ability level.”
Part of the problem is the way our health insurance system is structured: Doctors can write prescriptions for a certain number of home visits, but there aren’t really any mechanisms for seniors who need ongoing care. So your mother, who isn’t ready for a nursing home but definitely needs someone to check on her daily, just to make sure she’s bathed and has eaten and taken her meds, doesn’t get any help at all.
Poo lays out several solutions in her book, many of which are already in place in other countries. In Japan, for example, every person at age 65 can apply for benefits and receive an assessment, which means they can qualify for levels of stepped-up care. It’s a sensible solution that recognizes that age-related decline can be an ongoing, years-long challenge that 10 visits from a home health aide aren’t going to solve.
Some communities in the United States are also coming up with creative solutions to the aging-in-place problem. The Brookings Institution recently ran a story on “villages,” or a network of help for senior citizens, that are a little like intentional communities except that everyone stays in their own homes. They are nonprofit organizations run by members who pay dues and can qualify for support as they age. Stuart M. Butler and Carmen Diaz, writing for Brookings, report: “An annual fee typically provides members with transportation, routine social events, discounted medical and wellness services, provider referrals, and volunteers to help satisfy a broad range of member requests (from moving furniture to grocery shopping and help setting up computers).” They’re not widespread by any means and exist primarily in urban and suburban areas (there are 10 in Washington, D.C., if any of you have parents there). For more information, check out the Village to Village network.
It’s clear that we need a massive structural overhaul for how we care for our oldest citizens—one that allows them to age at home, with dignity, and one that pays eldercare workers a living wage. In the meantime, we have these piecemeal solutions. Village to Village has a network in my parents’ state, and one of the services offered is “medical notetaker.” I’ll make a note of it.