RENEE MONTAGNE, host:
This is MORNING EDITION from NPR News. I'm Renee Montagne.
In Personal Health this week, more on caregivers. Last week, we heard that people 75 and over put in the most hours of caregiving, and we met a woman who is a caregiver at the age of 101. Today, we'll examine another age group that does an unexpected amount of caregiving--kids who care for parents and other family members.
NPR's Joseph Shapiro has more.
JOSEPH SHAPIRO reporting:
Things were already bad enough for Valerie Imdorf. She had been forced out of her small house in Cuyahoga Falls, Ohio by a flood, and she had recently gotten out of a bad second marriage. But what worried her most was her oldest child, Ashley Reese. The girl was flunking out of middle school. She wanted nothing to do with her family.
Then on a cold day last winter, Valerie Imdorf had to start worrying about her own health.
Ms. VALERIE IMDORF: I woke up one morning and couldn't see out of my one eye. Went to a doctor, and went to another doctor and another doctor and so on, and I was just like, well, give me the medicine to fix it. I had no idea. I would hear them occasionally kind of mutter MS...
SHAPIRO: MS, for Multiple Sclerosis. The immune system turns on the body, and the result can be extreme fatigue, pain, and sometimes paralysis and blindness. In a doctor's waiting room, Imdorf said a prayer.
Ms. IMDORF: Lord, if this is what I am supposed to have, then I am trusting that you have a reason for this, that someone is going to be blessed. You're going to use me somehow.
Never in my wildest dreams did I ever think that that blessing was going to be with my own daughter.
SHAPIRO: On a recent evening in the Imdorf living room, Ashley, who is now 15, takes a syringe from a plastic package.
Ms. ASHLEIGH REHS(Valerie Imdorf's Daughter): I need to stick it out of the thing...
Ms. IMDORF: The nurse at the doctor's office who has MS taught us how to do the Copaxone.
SHAPIRO: Every night, Ashley gives her mother a shot of Copaxone. It's medicine that Imdorf hopes will reduce the effects of her MS.
Ms. REESE: And then you just pop off the tab...
SHAPIRO: Ashley and her mother are standing up next to the couch. They face each other. The two look alike, both with wire-rimmed glasses and long brown hair. Imdorf rolls up her sweater and pinches a bit of skin on her stomach to mark the place where her daughter is about to slide the long, thin needle.
Ms. REESE: And then you have to stick it straight, and just go with the straight on process of puncturing the skin, and slowly push in the medicine...
SHAPIRO: Her mother watches closely as Ashley guides the needle.
Ms. REESE: ...like that. And then you just pull it out straight.
SHAPIRO: A survey last year found that at least 1.4 million children provide care for a sick or disabled parent or family member. Kids from eight to 18, nearly two-thirds say they help someone eat, get in and out of bed, get dressed, take a bath, or go to the bathroom. A third of them help with medications.
Ms. CAROL LEVINE (United Hospital Fund): That's what nurses do.
SHAPIRO: Carol Levine is with the United Hospital Fund in New York. Her group and the National Alliance for Caregiving did the survey.
Ms. LEVINE: That's a big job to give to any kid. They do things like injections. They do things like monitoring symptoms. They do things like changing bandages. They do everything that an older caregiver would do if they were in the same situation.
SHAPIRO: So why do kids end up doing the work of nurses and nurse aides?
Ms. LEVINE: It's because there's nobody else to do it. If it has to be done, and the child is the only one in the house, that's what the child gets to do. Most people do not have paid homecare help.
SHAPIRO: Child caregivers are often scared that a sick parent will get hurt or even die. Sickness and caregiving can rip open the rawest emotions between children and parents, and that can lead to problems. The survey found that kids who give care are more likely to get into trouble at school. The youngest, between 8 and 11, are more likely to feel no one loves them.
Still, in many cases, caregiving makes families stronger--like the family of Valerie Imdorf and her daughter, Ashley.
Ms. REESE: I want to be a neurosurgeon, just because of what's gone through with her. I want to be able to find the cure for MS. That's my life goal, really.
SHAPIRO: That's a big change from before her mother got diagnosed with multiple sclerosis.
Ms. REESE: But if you met a year and a half ago, I would have probably told you I wouldn't really want to be anything. I just might as well be nothing. I didn't care about life. I didn't care about whether anything would happen to me. Whatever happened, happened.
SHAPIRO: Ashley told her mother she was going to run away. Imdorf says her second marriage was troubled, and the problems took a toll on her daughter.
Ms. IMDORF: She was a very depressed young lady, had absolutely no self-worth. Often talked about how she wanted to just quit school. She has made a complete and total turnaround. Teachers, they're going, wherever Ashley was at from last year, we don't want that one back.
(Soundbite of laughter)
SHAPIRO: Last year, Ashley was getting D's and F's. This year, A's and B's. She knows she needs them to get to medical school.
Ms. REESE: Once I found out that she had the MS, that actually turned me around, because I saw the effects of what it could do. Her reflexes aren't as good as they were, her memory's not as good as it was. And, when I see that, it's like, okay, I need to be here.
SHAPIRO: Still, when children become caregivers, they take on a role that's a bit like being a parent to one's own parent. Recently, Ashley was upset after a friend died in an accident. But Ashley didn't tell her mother about how she was feeling.
Ms. REESE: I sometimes feel like I can't tell her, because it's like, I know if she's having a hard time, that if she has more stress added to her, it's just going to make her worse.
SHAPIRO: But her mother still wants that role.
Ms. IMDORF: I always tell her that it doesn't matter. She should still tell me what's going on. Because I get more stressed wondering, because I can tell something's going on. Even though she thinks I can't, I can.
SHAPIRO: It's spaghetti night at Valerie Imdorf's house. In the kitchen, Imdorf stands over the stove. At one point, she loses her balance and catches herself against the kitchen counter. She's left her cane in the living room.
Imdorf's fiancé, Mike Vanover(ph), helps out. Ashley and her younger brother and sister help, too. Elaina is 12, and John, he's 8.
Mr. JOHN IMDORF (Valerie Imdorf's Son): One, I would like to be a lawyer for my mom, and two, I would like to be a paleontologist.
SHAPIRO: John and Elaina get the silverware. They set the table. Household chores fall heavily on kids who provide care.
Ms. IMDORF: Dinner's ready, folks.
Mr. IMDORF: Hey, wanna see me do something?
Ms. IMDORF: After dinner.
SHAPIRO: But it's the medical chores that will get more complicated. MS can get worse over time. Recently, Imdorf had a painful MS attack. She needed infusions of steroids. A nurse came over to put in the IV line, but the infusions lasted for hours. Insurance covered only part of the cost. The nurse offered to show Ashley how to do it, so the 15-year-old girl ran the solutions and steroids through the IV tubes for eight days.
Ms. REESE: It was, it was hard at first. I was nervous, just because it was like, you know, it was something that was really serious that I don't want to mess up. There were so many important things to do.
SHAPIRO: She kept the IV site sterile, watched for bleeding, used the medicine to avoid blood clots. But Ashley knows there's always another test.
Like the recent 9-1-1 call when her mother had a seizure that wouldn't stop.
Ms. REESE: I did not leave her side. I was right there, I was in the ambulance, I was there...
Ms. IMDORF: You were in the bed with me. Literally.
(Soundbite of laughter)
Ms. REESE: So, yeah, my outlook on life has really changed because of this. And I really don't feel like going back to where I was.
SHAPIRO: Ashley and her mother say they expect more MS attacks, that there will be more pain, more trouble seeing, standing up, walking--more shots, infusions, and emergencies. And more times when Valerie Imdorf will need her children to help her get back to health.
Joseph Shapiro, NPR News.
MONTAGNE: You can read about a new group that helps young caregivers at npr.org.
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