WYSO

AARP Finds Toll On Family Caregivers Is 'Huge'

Jul 18, 2011
Originally published on July 18, 2011 10:09 am

A new study by the AARP estimates that for the more than 40 million Americans caring for an elderly or disabled loved one, the value of their work is $450 billion a year.

That's a good deal for society. But for the family members doing the work, the study finds they need a lot more help.

Take Cymando Henley, 36, whose mother was diagnosed with multiple sclerosis when he was starting college. She now must use a wheelchair, and Henley has been taking care of her for nearly two decades.

Henley does have help. Montgomery County, Maryland, where they live, and the MS Society pay for a combined 35 hours of home health aides each week — though that's threatened by budget cuts.

But every day, Henley must help his mom in and out of bed and onto the toilet. He even rolls her over in the middle of the night if she becomes uncomfortable. Care like this from a professional can cost tens of thousands of dollars a year. But Henley does it for free, and it's on top of his full-time job. The AARP study finds that family members spend an average 20 hours a week providing care. Henley refuses to count, but his mom, Vicki, keeps tab.

"Cymando's care for me was about 40 hours a week," she says.

'The Burden On Families Is Huge'

Modern medicine now allows people to manage chronic conditions for decades. But the AARP study finds that increasingly complicated procedures are routinely expected of family caregivers.

Henley recalls a time when his mom was being discharged from the hospital. She had a catheter in, and the nurse said someone would call him and tell him how to take it out over the phone.

"And I said, 'Oh, no you will not.' 'Cause I'm like, really? This is my mother," he says.

Lynn Feinberg, who co-authored the AARP study, says modern family caregiving is incredibly stressful.

"The burden on families is huge," Feinberg says. "While families are stepping up to the plate and make this contribution to society, the cost to their own health and financial security is huge."

The study finds that those who cut back work lose hundreds of thousands of dollars in income over a lifetime. Feinberg says caregivers are also more prone to depression, physical ailments and social isolation.

"They will burn out, they will get sick, and there will be no other option but to place someone in a nursing home, which is what nobody wants," Feinberg says.

New Solutions

And if the burden for caregivers seems big now, according to Suzanne Mintz of the National Family Caregivers Association, it's only going to get worse as the baby-boom generation enters old age.

"Boomers have fewer kids than their parents did, and they're working, and they don't necessarily live around the corner anymore," Mintz says.

On top of this, there's a shortage of paid home health aides. Last week, the Obama administration joined labor groups calling for the creation of 2 million more jobs in home health care, plus a new visa for immigrants willing to enter the field.

Mintz has grappled with the problem in caring for her husband, who has multiple sclerosis. Earlier this year, she had trouble finding someone to change his catheter twice a week while she was at work. So she says she resorted to something a little crazy.

"With Steven's permission, I actually put a note on the neighborhood Listserv," she says.

Sure enough, a man who works from home said he'd be willing to try it. He's been doing it ever since — for free.

Mintz says we need to expand our definition of "family." Next year, she plans to launch a recruitment drive to match those in need with volunteers.

"It might be, 'I can drive her to PT for the next five Thursdays,' or 'I can bring meals for the next six months,' " Mintz says.

In other words, create a community of caregivers — an old idea for a new age.

Copyright 2018 NPR. To see more, visit http://www.npr.org/.

MARY LOUISE KELLY, host:

It's MORNING EDITION from NPR News. I'm Mary Louise Kelly.

STEVE INSKEEP, host:

And I'm Steve Inskeep. Good morning.

More than 40 million Americans care for an elderly or disabled loved one. Today, a new study by the AARP estimates the value of their work at $450 billion per year. That is a good deal for society. But it can be hard on the family members doing the work. The study finds they need a lot more help. Here's NPR's Jennifer Ludden.

JENNIFER LUDDEN: Cymando Henley's mother was diagnosed with multiple sclerosis as he was starting college. She's now wheelchair-bound, and Henley - 36 - has been taking care of her for nearly two decades.

Ms. VICKI HENLEY: A little bit more, son, a little bit more, right there is good.

LUDDEN: He rubs a prescription cream under her right knee. It helps with severe hot flashes and loosens her joints.

Mr. CYMANDO HENLEY: You know, I've had to give her injections before and that kind of stuff. This is much easier.

LUDDEN: Henley does have help. Montgomery County, Maryland - where they live -and the MS society, pay for 35 hours of home health aides each week, though that's threatened by budget cuts. But every day Henley must help his mom in and out of bed, onto the toilet. He even rolls her over in the middle of the night if she becomes uncomfortable.

Care like this from a professional can cost 10's of thousands a year. But Henley does it for free, of course, and on top of his full-time job. The AARP study finds family members spend an average 20 hours a week providing care. Henley refuses to count, but his mom, Vicki, keeps tab.

Ms. HENLEY: Cymando's care for me was about 40 hours a week.�

LUDDEN: That's like another full time job.�

Ms. HENLEY: Yes.

LUDDEN: Modern medicine now allows people to manage chronic conditions for decades. But the AARP study finds increasingly complicated procedures are routinely expected of family caregivers. Henley remembers the time his mom was being discharged from the hospital. She had a catheter in, and the nurse said, oh, we'll call and tell you how to take it out over the phone.

Mr. HENLEY: And I said, Oh no, you will not. 'Cause I'm like really? This is my mother.

Ms. LYNN FEINBERG (Co-author, AARP study): The burden on families is huge.

LUDDEN: Lynn Feinberg co-authored the AARP study. She says modern family caregiving is incredibly stressful.�

Ms. FEINBERG: While families are stepping up to the plate and provide this contribution to society, the costs to their own health and financial security is huge.

LUDDEN: The study finds those who cut back work lose hundreds of thousands of dollars in income over a lifetime. Feinberg says caregivers are also more prone to depression, to physical ailments and social isolation.�

Ms. FEINBERG: They will burn out. They will get sick. And there will be no other option but to place someone in a nursing home, which is what nobody wants.

LUDDEN: And if the burden for caregivers seems big now? Suzanne Mintz, of the National Family Caregivers Association, says it's only going to get worse as the baby boom generation enters old age.�

Ms. SUZANNE MINTZ (President, National Family Caregivers Association): Boomers have fewer kids than their parents did. And they're working. And they don't necessarily live around the corner anymore.

LUDDEN: On top of this, there's a shortage of paid home health aides. Last week, the Obama administration joined labor groups calling for the creation of two million more jobs in home health care, plus a new visa for immigrants willing to enter the field.

Suzanne Mintz has grappled with the problem in caring for her husband, who has MS. Earlier this year, she had trouble finding someone to change his catheter twice a week while she was at work. So, she says she resorted to something a little crazy.

Ms. MINTZ: With Steven's permission, I actually put a note on the neighborhood list serve.

LUDDEN: A little different than watering the flowers.

Ms. MINTZ: Yeah right, right.

LUDDEN: Sure enough, a man who works from home said he'd be willing to try it. He's been doing it ever since - for free.

Mintz says we need to expand our definition of family. Next year, she plans to launch a recruitment drive to match those in need with volunteers.

Ms. MINTZ: It might be, I can drive her to PT for the next five Thursdays. Or I can bring meals for the next six months.

LUDDEN: In other words, create a community of caregivers - an old idea, really, for a new age.�

Jennifer Ludden, NPR News, Washington.� Transcript provided by NPR, Copyright NPR.