RACHEL MARTIN, HOST:
As Americans live longer, millions of adult children - husbands and wives - are taking on the new role of family caregiver. This calls for a bit of nursing expertise that very few have. So now some states are requiring that hospitals do some basic skills training for these caretakers before a patient is released. Taunya English from member station WHYY has more.
TAUNYA ENGLISH, BYLINE: Dementia has been slowly stealing Ruth Perez's memory and thinking ability for 20 years. Her daughter, Angela BoBo, remembers when it was clear that her mother was never going to be the same.
ANGELA BOBO: She would put food together that didn't belong together; for example, hamburger and fish in a pot. Mom never cooked like that.
ENGLISH: Mother and daughter live together just outside of Philadelphia where Perez is literally the center of the family tucked under a fleece blanket on a BarcaLounger in the middle of the living room. The 87-year-old doesn't seem to notice as her daughter and grown grandchildren come and go. They keep up a steady one-sided conversation with her anyway.
BOBO: If I kiss her, she might lean towards me and sometimes she'll nod. Right, Mom?
ENGLISH: She can't answer. She can't lift her arms or move her legs. Earlier this year, the pressure of lying in one place created a small blister on Grandmom's hip. Then it became a bed sore.
BOBO: I couldn't get it to go away. When I say we were at our wits end with it, we were beyond there, OK? Like, what do we do? What do we do to fix this?
ENGLISH: Bobo is one of 44 million Americans who are unpaid and care for a family member at home. For 10 years, she's helped her mother eat, dress and go to the bathroom, but the bedsore was more than she could handle. In North Carolina, Ken Everhart, who's a retired tech guy, says he was also overwhelmed when he became a caregiver for his wife, Genie.
KEN EVERHART: What we really needed was for someone to sit me down in a class and tell me here's how you change the sheets while she's still in the bed. Here's how to give a sponge bath. Here's how to monitor her blood pressure.
ENGLISH: He was a caregiver for just a few months 10 years ago. Everhart says he was never quite sure when to call 911, and Genie bounced back to the hospital three times.
EVERHART: I had given her a straw to drink out of and, you know, in the sippy cup and I went to make a phone call. I wasn't gone five minutes and I came back in and she was choking and throwing up on the bed. Well, I should have sat her up and I should not have allowed her to have anything to drink when I wasn't in there to watch, but I didn't know that.
ENGLISH: His wife recovered, but Everhart was angry and feels like he was left all on his own. Physician Susan McAllister leads transitional care at Cooper University Health Care in New Jersey. She says these days it's common to come in for something as serious as a heart attack, get treatment and leave just a few days later.
SUSAN MCALLISTER: When patients leave the hospital, they generally leave quick and sick.
ENGLISH: McAllister says hospitals need to do more than plop a stack of discharge papers in a patient's lap and wheel her out the door. So New Jersey and other states have passed laws that require hospitals to record the name of a designated family caregiver when a patient is admitted and to include that person in the plans for care after discharge.
MCALLISTER: The law is your bare minimum. It says it is the right thing to do to find a caregiver and connect with them and guide them on instructions.
ENGLISH: McAllister says Cooper Hospital does more but doesn't get paid for those extra steps. The government does ding medical centers with a financial penalty if too many patients have to be re-admitted. That rule pushes hospitals to make sure family members learn what they need to know. So what happened with Angela Bobo's mother? The doctor wrote a prescription for skilled nursing care at home. That way, Medicare paid for the extra help and BoBo got lessons in cleaning and dressing her mother's bed sore. Now she knows what signs to look for.
BOBO: Sometimes there's red blood, which is a good thing, right, Dave? And then...
DAVID WILSON: You got it. Yeah, that's always a good thing, yes.
ENGLISH: That's Dave Wilson. He's a registered nurse with a local home health agency, and he says teaching is part of his work.
WILSON: I will tell you, in home care, the biggest thing is fear.
ENGLISH: He encourages reluctant family caregivers to do what they can. But Angelo BoBo says, best of all, for a few weeks nurse Dave kept coming back and that gave her confidence to care for her mother. For NPR News, I'm Taunya English in Philadelphia.
MARTIN: This story is part of a reporting partnership with NPR, WHYY's health show "The Pulse" and Kaiser Health News.
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