With Ailing Parents, Children Take Charge

In a surprisingly large number of families, children have become the primary caregivers for parents. In this week's Behind Closed Doors segment, host Cheryl Corley speaks with Connie Siskowski, Founder & President of Volunteers for the Homebound & Family Caregivers, as well as Patricia Lawson and her son Davoun.

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CHERYL CORLEY, host:

I'm Cheryl Corley, and this is TELL ME MORE from NPR News. Michel Martin is away.

Just ahead, an audio postcard from Haiti, where citizens and aid workers work to overcome natural devastation to make a brighter future. But first, it's time to step Behind Closed Doors. That's our weekly segment in which we discuss issues that are often kept private.

Today, we talk about children who must care for ailing adults. The latest available estimate, from 2005, states that as many as 5.5 million young people are caring for adults. Joining us now to discuss this matter is Connie Siskowski. She's the founder and president of Volunteers for the Homebound and Family Caregivers. That's a Florida-based organization. Also with us, Patricia Lawson and her son, Davoun. Welcome to the program.

Ms. CONNIE SISKOWSKI (Founder, Volunteers for the Homebound and Family Caregivers): Thank you.

Ms. PATRICIA LAWSON: Thank you.

Mr. DAVOUN LAWSON: Hello.

CORLEY: Patricia Lawson, tell me a little bit about your situation. As I understand, you have multiple sclerosis. When did you find that out?

Ms. LAWSON: July the 14th of 2004, I was diagnosed.

CORLEY: Are you in a wheelchair?

Ms. LAWSON: No, not at this particular time. I hope and pray to the lord I never have to go into a wheelchair.

CORLEY: So it's really difficult for you to get around and to walk around, and to just get from place to place?

Ms. LAWSON: Yes.

CORLEY: I was wondering, though, in this situation, where you have a young son, Davoun, and you have several medical issues that you have to deal with, how did you arrive at the decision that your child would have to be the one that was going to take care of you?

Ms. LAWSON: Well, unfortunately, the situation that occurred to me, it enabled me to be able to do the things for myself that I was capable of doing before. So at that particular time, it placed my children in the situation to be able to assist me, and as time grew on, they were able to establish ways of their own on how to assist me as much as possible.

CORLEY: All right. So why don't I ask Davoun. Davoun, why don't you tell us how you take care of your mother. What do you do?

Mr. LAWSON: To take care of my mother, like, sometimes when she wakes up in the morning, she cannot get out of bed. So she would ask me to get her some juice or something like that, and I would, or like when she's getting up, I would, like, help her get up. Like, I would wrap her arm around me, and I would help her walk, like, to get where she has to go.

CORLEY: Davoun, how old are you?

Mr. LAWSON: I am 12 years old, turning 13 on April 11th.

CORLEY: All right. So you're about to be a big teenager soon.

Mr. LAWSON: Yes.

(Soundbite of laughter)

Ms. SISKOWSKI: Happy birthday early.

Mr. LAWSON: Thank you.

CORLEY: Yes, happy early birthday to you. I happen to share that birthday date. So it's a very special day.

Ms. LAWSON: Oh, well, happy birthday to you, as well.

(Soundbite of laughter)

CORLEY: Connie Siskowski, what types of coping mechanisms does your organization teach to families in this kind of a situation?

Ms. SISKOWSKI: Well, one of the things that we do is that we teach children and each of the schools that we work with. And we have four core classes that include communication skills, that include helping a child know how to communicate with a health- care professional because sometimes if they're translating or helping their parent, or grandparent or whoever to the doctor - so that they can feel comfortable.

We do a class on managing stress. We do self-care and also, life skills to help with problem-solving. We all know that adult family caregivers incur many ramifications of caregiving and students do, too. And they don't have the experience bank that an adult does.

CORLEY: Are child caregivers usually children in single-parent households, or how would you characterize that group of children?

Ms. SISKOWSKI: Not necessarily. The national study did show that more children were from single-parent households, but in our particular population we're seeing, really, a combination. Also, we're seeing that the national statistics show more multigeneration households. And so, while there may be a single parent, there are often other adults present.

CORLEY: When you say the national study, are you talking about the one from 2005 or what, exactly?

Ms. SISKOWSKI: Yes, the 2005 is really the only national study that was conducted by the National Alliance for Care Giving and United Hospital Fund.

CORLEY: And what is - you talked about a variety of scenarios, but is there a common one that you see at your organization?

Ms. SISKOWSKI: Now, it really is across the board, and our organization is somewhat unique, being in Florida, where there tends to be an older population. We have many students whose grandparents are their custodial parents, and then the grandparent gets ill. We do have single-parent families.

And what's really fascinating is that many of our children, in fact, we did a record review not too long ago of 75 children, and 19 of them were caring for more than one person.

CORLEY: Patricia, why don't you talk a little bit about what is your biggest concern for Davoun, who is, you know, has some extra responsibilities.

Ms. LAWSON: My concern with my child is that he just get a full, rounded education. And that the board of education will look into the fact that he, as a child that has a mother with MS, is doing as much as he possibly can do to focus on his education, to be to school on time, and to participate and keep his mind focused as well as he can, knowing that, you know, perhaps one day he may get a phone call in school, emergency, my mom is at the hospital.

We don't know what one day from the next day may bring. But my concern with my child is that he has a child life, and he's continued to remain a lovely person as he is.

CORLEY: Well, how has the school reacted to Davoun being in charge of caring for you?

Ms. LAWSON: They expressed to me that they understand that his situation, because of my disability, is understandable to them, and it's acceptable to them that he comes late sometime because I'm unable to, you know, use my legs as much as possible. They have been fairly supportive, but when they started writing out he's late, and he's late and he's this and he's that, it's not the people, per se, in school.

But it's the state that they have to deal with, stating that, well, there's no excuse. They cannot understand the excuses that the teachers or the dean of school can see that this woman has a disability. She's doing the best she can to get her child on time for school. But it has to be marked that he's late, he's late, he's late. And he's going to be late consistently because his mother is disabled to be able to get out there and do as some other parents are able to do.

CORLEY: Connie, have you found that to be a problem with school systems as children try to juggle their family responsibilities with their school responsibilities? Have school systems been receptive to this?

Ms. SISKOWSKI: Yeah, actually, if you look at school as being the work of a child, the child incurs many consequences just as an employed adult family caregiver does. And a lot of times, the school system is ignorant until they have experienced a situation that involves a family health issue. You know, it's a matter of educating our educators, our public and our professionals about family health issues and what caregiving really takes.

CORLEY: Davoun, can you tell me a little bit about how you feel about the situation at your end? If you have any worries when you're caring for your mom, or if there's any good things about this experience.

Mr. LAWSON: I do have one worry about the situation because, as you know, I help my mother in many ways when she can't get around as good. So, I worry that, like, sometimes I might not be around, and she might have to do everything for herself. So I try to be there as much as possible to help her.

CORLEY: Are you able to do things at school as well? Or do you want to just make sure you're at home?

Mr. LAWSON: I balance my school education, too, because I do focus the best I can to get all my work done and all my homework. And when I get home, I just complete my homework. Then I just help my mother as much as I can.

CORLEY: What's the good side, you think, to having this experience with your mother?

Mr. LAWSON: I think the good side about it, it just makes me a stronger person.

CORLEY: Patricia, it sounds like you have a very fine son there. You must be proud of him.

Ms. LAWSON: Extremely proud, yes I am, very loving young man.

CORLEY: Connie Siskowski, there are organizations in the United Kingdom, and Australia, New Zealand. They've all recognized child caregivers for years, offering support groups and recreation activities and ways on the web for young people to express themselves, some of the things that you were talking about that are needed here. Do you expect that to happen soon in the United States on a more broad base?

Ms. SISKOWSKI: Absolutely. Our project began as a pilot back in 2006. So now we have a history where we've discovered what works. We've developed materials. And we began the American Association of Caregiving Youth to spawn additional projects and to be a resource for preteens, teens, families and professionals who are helping students to deal with these issues.

So, we have started a network of people in different parts of the country who are interested in helping youth caregivers. And so we look forward to the further development of these children getting the support that they need and deserve, so that they can have childhood.

CORLEY: Connie Siskowski is the founder and president of Volunteers for the Homebound and Family Caregivers, a Florida-based organization. She joined us from WXEL in Florida. Patricia Lawson and her son, Davoun, were kind enough to join us from their home in Little Ferry, New Jersey. Thank you all for speaking to us today.

Ms. LAWSON: Thank you for having us.

Ms. SISKOWSKI: Thank you so much.

CORLEY: Remember, at TELL ME MORE, the conversation never ends and if you or a relative ever had to step up as a caregiver at an early age, we'd like to hear from you. Did it bring you closer together as a family or drive you apart? To tell us more, please call our comment line at 202-842-3522. That number again is area code 202-842-3522.

Please remember to tell us your name and where you're from. Or you can go to our Web site, the TELL ME MORE page of npr.org, and blog it out.

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