Tue October 23, 2012
Kids As Caregivers Face Special Challenges
NEAL CONAN, HOST:
This is TALK OF THE NATION. I'm Neal Conan in Washington. Taking care of an ailing parent or grandparent can be an emotional and physical drain on anyone. Of course, millions of us take on those family responsibilities, but it's never easy, and there's a subset of family caregivers that often gets overlooked.
Well over a million kids between the ages of 8 and 18, children, forced to accept adult roles in sometimes difficult circumstances. If you took care of a sick or disabled family member as a teen, call us and tell us your story. How did it change your life? 800-989-8255. Email firstname.lastname@example.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.
Later in the program, an argument to change the default model of higher education, the long, boring lecture. But first young caregivers. Connie Siskowski is founder and president of the American Association of Caregiving Youth and joins us now from a studio in Fort Lauderdale. Nice to have you on TALK OF THE NATION today.
CONNIE SISKOWSKI: Thank you.
CONAN: And this is your story. Take us back to what happened to you in eighth grade.
SISKOWSKI: So, actually, it began when I was in sixth grade, and we lived with my grandparents. My parents were divorced, and my grandfather at the ripe old age of 84 retired, and as with many people who retire, his health was declining. And he needed assistance.
He was no longer able to be independent. So I stepped up to the plate to be with him, to do all that I could to help him, support him, and as his health declined, we - a few days before, I guess, we had a physician do a house call, and he needed medication around the clock.
So I started sleeping in the living room so I could be closer to his bedroom. And at 2 o'clock in the morning, I went to give him his pill, and I was the one who found him no longer breathing. So he was the person in my life that I was closest to. He was my hero. He taught me so many things.
And it was at a time when I think the effects of caregiving, much less effects of death on a child, were really not known.
CONAN: And clearly there were costs, but there were also benefits, I assume.
SISKOWSKI: Well, yeah, I think it directed my career. It may have given me, you know, more compassion, more empathy. I'm not sure that I had, you know, the skills that I could transfer into my adult life at that time.
CONAN: And tell us a little bit about the cost, too.
SISKOWSKI: The cost I didn't really realize, and I - nobody did. So, I mean, it's nobody's fault. But being alone in that family did have a personal cost in that I did feel isolated. Professionally, I wound up doing well, but personally I made some choices that today I would have preferred not to have made. And, you know, who knows if it was from that or not.
But it was years later, when I was in counseling, that my therapist pointed out to me that, you know, maybe since there were other adults in the home that what I was doing was beyond what should be expected of me to do. Would I trade that? No.
CONAN: But again, more awareness might have helped you through it, too. And that is, again, a turn your professional career has taken.
SISKOWSKI: Correct. He had heart disease, and so I became a cardiac nurse, and I did many things across the health care industry, and in - in 1998 I had the opportunity to go to the first international conference on family caregiving in London, and it was there that I learned about what they call young carers, children, who are caring for family members and the effects on them.
And so it was like a seed was planted with my grandfather, and then I learned many more things throughout my life, and then I heard about the effects on these children, and that same summer I went on a mission trip with kids from my church, and one of the boys' dad had just died, and another girl's dad had pancreatic cancer, and other kids were concerned about their grandparents' health and their parents' health.
So as a health care professional, I knew that health care was changing. People were leaving the hospital quicker and sicker, and technology was providing the opportunity for more complicated care to be delivered at home, but when those decisions were made to discharge people more quickly, it was about the financial survival of the hospital system. It really didn't have the chance to look at the ramifications on the family.
CONAN: Especially that group that you're interested in, the younger people.
SISKOWSKI: Correct, and as people are living longer, that care goes on for longer, and it's not only parents and grandparents, but it can also be ill or disabled siblings that children help support in the family.
CONAN: And one manifestation of this is when you were doing it for your grandfather, I presume you thought you were unique, that this was very unusual, you were the only person doing it.
SISKOWSKI: I don't think I - I think I was in such a survival mode and in such a mode I don't think I really thought about that. It didn't come to me, but today, things are different with children, and they do think about that, and no one wants to be different.
SISKOWSKI: So I guess I was always kind of different because way back then, parents didn't get divorced. So I was kind of outside of the norm to begin with.
CONAN: We want to hear from others in our audience who've had similar experiences, who as children or as teenagers took care of a family member who was ill or disabled, 800-989-8255. Email us, email@example.com. Ashley's(ph) on the line with us from Oklahoma City.
ASHLEY: Hi, thank you so much for having me on your show. I enjoy your show so much.
CONAN: Thank you.
ASHLEY: Well, like I was telling the lady that answered the phone, I've been mixing insulin for my dad since I was like 6 years old. Before they had lancets, which you could take once a day. You had to mix a certain amount of units per insulin. So you had Humulin N and Humulin R, and I would mix those together because my mom before she found out she had diabetes was too scared to give my dad the shot when his blood sugar would go really low.
So I took care of my dad. I gave him shots. I made sure he took his glucose tablets. When my mom got sick, she had congestive heart failure, and besides, my parents had me very late in life. My dad was about 45 when I was born. So I took care of them the best I could.
But in retrospect, I missed out on a lot of things as a child because I was so worried about if they were OK, if they had their medicine, if they had taken everything they needed to. Even college-wise, I only moved 30 minutes away so that way I can go home every weekend no matter what. When I first got my car, I remember driving back from Edmond to Oklahoma City, which is about a 30-minute drive, and making sure my mom had insulin at like 2 in the morning and using some of my scholarship money to make sure they had pills and setting up emails for the new scripts that they had to get mailed to their house instead of being able to pick it up at Walgreen's. Like even now, I still feel a little guilty not staying with my mom after my dad passed because I feel like I'm supposed to be here, that's my job.
CONAN: And so, it really did completely change your life.
ASHLEY: It did. It made me feel like such a grownup and an adult when I was little, but looking back now, I took care of two grown people, and I made sure - I was a little assistant. I gave shots. I gave pills. I - and even now, I have a little girl that's 1, and we, after my dad died when I was 19, I moved in with my mom, and I'm so - I've had so many opportunities to move out, but I'm so reluctant, too, because who's going to be there for her, who's going to take of here? I've taken care of her all of my life. I don't know any other way, and I don't think she does, either.
CONAN: Connie Siskowski, I think Ashley has the experience of a lot of people.
SISKOWSKI: She does, and we've seen it in the many children in our caregiving youth project in Palm Beach County, Florida. And Ashley, I commend you and really value what you have contributed not only to your family but also to society.
ASHLEY: Thank you so much, and I appreciate you for taking care of your mom and making sure that she had everything. It takes a lot, but when you're a kid, when you love somebody that much, you do whatever you can for them. It doesn't even - you don't even think about it. You don't have those kind of biases as you did if you were a grownup.
CONAN: Ashley, thanks very much for the call, and we wish your mom the best.
ASHLEY: Thank you.
SISKOWSKI: And so sometimes children step in because there is no one else to do it. Others are assigned and don't feel that they have an option to not do it. And so just as with adults who don't feel that they have an option, there's more frustration if it's assigned, or you must do it, versus willingly helping.
CONAN: And that can also add to the - Ashley was talking about the guilt she felt sometimes, and, boy, that could all add up, too.
SISKOWSKI: The guilt, the anxiety, the frustration, the depression, and when the person that you're taking care of dies, there's a sense of a loss of purpose, and that hasn't been well-recognized within child grief.
CONAN: Grief, was that a term that you understood fully when your grandfather died?
SISKOWSKI: No, you know, it was years and years ago. It wasn't an issue that was addressed at all. In fact, you know, I remember going to the funeral home to help pick out his casket and participating in his service and his burial, and then he was gone.
CONAN: Connie Siskowski is with us. We're talking about what happens when kids become caregivers. In a moment, more about the long-term effects teens from putting their own lives on hold. Psychologist Laurence Steinberg will join us. If you took care of a sick or disabled family member as a teen, call and tell us your story, 800-989-8255. Email us, firstname.lastname@example.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION, from NPR News.
(SOUNDBITE OF MUSIC)
CONAN: This is TALK OF THE NATION, from NPR News. I'm Neal Conan. Kim Shifren was just 14 when she became a caregiver. Her mom suffered a massive heart attack. For a month, Kim cleaned the house, made dinner, helped her mom dress, bathe and eat. Her mom had two more heart attacks, and Kim took on a similar role after each one.
Years later, she told CNN that she worried about getting married and having kids. It wouldn't be right, she said, because she didn't want to put her own family through that experience. We've posted a link to that CNN story, "Young Caregivers Put Life on Hold," at our website. That's at npr.org.
If you took care of a sick or disabled family member as a teen, call and tell us your story. How did it change your life? 800-989-8255 is our phone number. Email: email@example.com. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.
Our guest is Connie Siskowski, now founder and president of the American Association of Caregiving Youth. And joining us now is Laurence Steinberg. The teen years are a challenging time under the best of circumstances. Researchers are just beginning to study what happens when those teens also become caregivers. Professor Steinberg studies the adolescent brain, behavioral and psychological development. He's a professor of psychology at Temple University, author of "You and Your Adolescent: A Parents' Guide for Age 10-20." He's with us now by phone from his office in Philadelphia. Nice to have you back on the program.
LAURENCE STEINBERG: Good to be back. How are you?
CONAN: And when we talk about teens who are assigned to care for sick or disabled relatives or take on that task, it takes a certain amount of maturity to deal with those things. Are there ways in which added responsibility is actually good for development?
STEINBERG: Sure. I mean, we know that adolescence is a very important time for the development of responsibility and for being able to make wise, independent decisions. And I think we also know that the more we let teenagers practice doing those things, the better they get at them. So under certain circumstances, having these extra responsibilities can be very positive for kids.
CONAN: And sometimes having an organizing principle to your life can focus a teenager.
STEINBERG: Yeah. One of the things that we study is positive psychological development during adolescence - not only how to prevent problems, but how to promote positive functioning. And we are - we see that when teenagers feel that their life has meaning and purpose, they are much healthier, mentally and physically, than when they don't feel that way.
So if this experience is providing that, then it's very good for the adolescent's mental health.
CONAN: Then there's the other side, and here's an email we have from Crystal(ph) in Virginia: I had to drop out of college after three semesters to take care of my grandparents, one with cancer and one with severe diabetes. The experience made me despise my mother and uncle, who should have stepped up and taken care of them. Subsequently, I never finished college and have suffered professionally. Today, I don't speak to my mother or uncle. I loved my grandparents, but I also deserved help. And so, clearly, different circumstances can have very different outcomes.
STEINBERG: Right. So I think that we need to put this responsibility in the context of the many other things that young people are trying to do and need to accomplish during this phase of life. And like anything else, you know, if it interferes with things like going to school or having time for recreation or for your friends or just for yourself, if it compromises those activities too much, then there could be a downside to it.
CONAN: Connie Siskowski, I wanted to bring you back into the conversation, here. Clearly, there are many stops along the spectrum from positive and negative effects, and most people find themselves not in just one spot, but probably several.
SISKOWSKI: Well, exactly. And so our caregiving youth project supports the student caregiver in school, out of school and at home so that they know that they're not alone, they meet with a group of other caregiving youth at school, and that relationship continues from sixth grade through their high school graduation.
Or we do a home visit by a social worker to strengthen the family and link the family to other resources that they may not otherwise know about. And then we try and return a bit of childhood. We have a camp and other sponsored activities so that the kids have some respite, as well as time to enjoy life.
CONAN: Let's see if we can get another caller in, and this is Jonathan, Jonathan with us from Porter in Texas.
JONATHAN: Hello. How are you doing?
CONAN: I'm well, thanks.
JONATHAN: Good. I used to take care of my grandfather towards the latter end of high school and on into college. He was pretty much bedridden. He could get into his wheelchair and move around, but it was hard for him. I took care of his feeding, his bathing, everything. He couldn't do too much on his own.
And I wouldn't say that I wouldn't do it again, but I wish I had known to (unintelligible), because I had to be there after high school, I mean, after school was out, and after college was out, I had to go straight home. So my dating life just did not exist. Time, for me, just wasn't there.
And so I can't blame him, but my social skills aren't what they should be. And so I wish I'd have not neglected myself as much. I would still do it again, but I just wish I knew what to look out for.
CONAN: Wish you knew what to look out for. I think all of us would - well, Jonathan, we applaud your decision to take care of your granddad, and as you say, certainly not his fault.
JONATHAN: No, not at all.
CONAN: All right, thanks very much for the phone call.
JONATHAN: Have a good day.
SISKOWSKI: And so the more that we can support children who are in this role and so that they have the opportunity to serve, to take care of someone, to develop their empathy and compassion and skills, then the better off they, their family and our society will be.
CONAN: Laurence Steinberg, Connie Siskowski was also talking about that kind of isolation that can - kids, teenagers especially, want to fit in. They want to be like everybody else.
STEINBERG: And not only do they want to be like everybody else, they want to be with everybody else. You know, but I think that to put this in context, I think we know from studies of adult caregivers that it's very hard. It can be very stressful and very isolating, and people burn out. And just as Connie was saying about this program, caregivers of any age need support from other people, and they need breaks, and they need to be able to experience the other things in life besides just giving care for one person.
So I think anything we can do to provide young people who are placed in this position, and as, you know, your caller said, you know, sometimes things happen in life, and you just have to step up and, you know, and do your part. But anything we can do to help support young people while they're in this role is going to make this into a more positive and less potentially harmful experience.
SISKOWSKI: Right. So the job of a child is to learn, and when you're stressed about your caregiving responsibilities at home, it interferes with your learning.
CONAN: Let's see if we can go next to Christina. Christina is with us from Columbia, South Carolina.
CONAN: You're on the air. Go ahead, please.
CHRISTINA: I just wanted to say I'm very glad that there now seems to be a little focus on this, because this happened to me back, oh, gosh, when I was 15. My mother had a stroke, and I was an only child. So - and I will say hospitals were focused on getting them home. They never asked: were you the only caregiver? So I understand that.
CONAN: So it was just you and your mom?
CHRISTINA: Yup. She was perfectly fine. Then she had surgery, and she just threw a blood clot and had a stroke. And so after that, it was taking care of her and then working in the afternoon and going to school and trying to work, something eventually (unintelligible). That was my biggest regret, school gave.
CONAN: School gave, so you had to give that up.
CHRISTINA: Yeah, I dropped out of high school. And..
CONAN: And, obviously, that affects your life in so many ways afterwards.
CHRISTINA: Oh, yeah. But you didn't talk about it much back then, because I was working with adults. So I was, I guess, like she was saying, you grow up, you mature for your age. So it does play into the rest of your life. But you do develop empathy, and I will agree with the lady who said that a lot of people resent being thrust into it. That's something I've always resented.
CONAN: How's your mom doing?
CHRISTINA: Oh, well, she passed 15 (technical difficulties).
CHRISTINA: So - well, I thought, you know, then I'd get my life back on track, but now I have a disabled daughter. So my whole life has been caring for other people. But I'm just glad children, hopefully, will get some attention because they do need it.
CONAN: Christina, thanks very much for the call. Thanks for sharing your story.
SISKOWSKI: Thank you, Christina.
SISKOWSKI: And so we want to bring together systems of health care, education and the community, because only by working together and supporting these caregiving families, can we create change in the services that caregiving youth need.
CONAN: I wonder, Laurence Steinberg, Christina was talking about, well, we didn't talk about it much. Is there some sort of stigma attached to this, do you think?
STEINBERG: I'm not so sure it would be a stigma, but I think that clearly the, you know, the young person who has this responsibility is going to be missing out, you know, on things, things that, you know, adults might see as trivial or unimportant, but that are quite important to teenagers. And perhaps there might be some social stigma associated with the missing out of those things rather than the caregiving itself.
But, you know, I was wondering, as I was listening to that last caller with that very sad story, whether it's not possible in programs like this to help mobilize the support of other teenagers that this teenager goes to school with to help provide some spells of caregiving by somebody else or to maybe even just keep the teenager who is the caregiver company while he or she is doing it. And I wonder whether anybody has thought about that.
CONAN: Connie Siskowski, is that something that your program does?
SISKOWSKI: Absolutely. We provide respite, and even we provide respite in the home so that the child can be with other kids and normalize their life. And what we see as a stigma maybe a little bit associated with caregiving because caregiving youths are more likely to bully or to be bullied. But also there's stigma and guilt associated with certain illnesses - mental health, Alzheimer's disease, substance misuse in particular.
CONAN: Let's see if we can get another caller in. This is Jennifer(ph), Jennifer with us from August, Georgia.
JENNIFER: Hi. This is a good show because when I was (technical difficulty), I got diagnosed with multiple sclerosis. My brother was 13 then, and he was also suffering through his own Asperger's issue. And he - I had to rely on him to keep my spirits up, take care of me, make sure nothing went wrong with me, just being around the house or out in public or just taking a shower. He just had to watch over me.
Now that he's - you know, we live in two different states. He still watches over me and checks on me. And he just - it just made him more mature. And he -only he and my family knew what was going on with (technical difficulty) what he wanted, to help him out or understand. So he (technical difficulty), he was helping me.
CONAN: Did you ever speak with him about some of the costs that he had to bear, the things that he had to sacrifice to do that?
JENNIFER: Yes. At first he was upset, you know, because (unintelligible), you know, and he had to rely on me for transportation, which is kind of hard when you're kind of paralyzed, but doesn't regret a single thing, and he still wants to help me out.
CONAN: It's great that that still works out. And he still calls and visits?
JENNIFER: Yes, he still calls and visits. And he knows I can rely on him especially since I'm pregnant right now and I'm going to need some help after the delivery. And I know I can rely on him, and he's waiting to be the babysitter.
CONAN: Jennifer, good luck with the pregnancy, and congratulations.
JENNIFER: Thank you.
CONAN: We're talking about child caregivers. Our guests are Connie Siskowski, who's the founder and president of the American Association of Caregiving Youth. Also with us, Laurence Steinberg, professor of psychology at Temple University, author of "You and Your Adolescent." You're listening to TALK OF THE NATION from NPR News.
And here's an email we have from Christina(ph) in Jacksonville: When I was 18, my grandmother had a stroke during my Christmas break when I was home from college. She was sent home from a - with a hospital bed and only a few weeks to live. My parents worked full time, and the responsibility of caring for her fell to me. As a child, she cared for me before I was of school age, and when the baby - tables were turned, I could tell she was ashamed that I was the one now taking care of her. She couldn't talk, but remembering the look in her eyes when I had to bathe and feed her just breaks my heart. She made it to Christmas and died the next day. I'm old - I'm 30 years old now. I look back on this as the most difficult thing I ever had to do in my life, but I'm grateful I had the opportunity, and my grandmother got to spend her last day with people she loved.
Let's go next to Anne(ph), and Anne's with us from Muskegon, Michigan.
ANNE: Hi. I work in the hospice field. I'm a medical social worker, and I work with terminally ill patients. And I think the one thing that was spoken about earlier that's very important is that there is a tendency with the children and adolescents that I work with who tended to be the primary caregiver because the, you know, the spouse or another caregiver has to go out to work, is that when that patient dies, there is an extreme amount of grief and loss not surrounding necessarily always having to be the primary caregiver, but the fact that they have, depending on their age, lost a lot of their childhood.
And I think that that needs to be probably also the focus, re-acclimating them back to a non-caregiving state and assisting them with that grief and loss that not only surrounds, you know, their issues with the fact that somebody passed away, but that they've lost a little bit to a significant amount of their life.
CONAN: Connie Siskowski, the transition back from being the caregiver. I hadn't thought about that.
SISKOWSKI: Well, and children often develop an identity as a caregiver and become kind of medicalized. And so I think the caller is right on target that part of re-entry, if you will, is helping with the social skills as well as the re-entry into childhood, just as we see among women who return to the workplace.
CONAN: And, Laurence Steinberg, I wanted to ask you. Clearly, difficulties dealing with that loss of that organizing principle, loss of - the grief and the loss, but also there may be some guilt over the fact that the child may feel some relief as well.
STEINBERG: Yeah. As I was listening to the last caller, I was thinking what a complicated mix of emotions and interpersonal dynamics and decision-making that has - that goes on here because we hear about how this transforms the relationships between the family members now that one of them is dependent on the other for care. And as you say, you know, there may be ambivalence on the part of the caregiver that - and we don't know whether the caregiver always has people to talk about those feelings with.
And then the transition from being the caregiver to no longer being the caregiver and how that affects the adolescent sense of purpose and identity. It's - I think it's much more complicated than most people realize.
CONAN: And in - go ahead. Connie, go ahead.
SISKOWSKI: No, I was going to say exactly. And also it's dependent upon the types of caregiving tasks that you have to do. So when there's more, say, wound care and particularly in dealing with somebody with the opposite gender, it may be a lot more traumatic than people understand.
ANNE: Can I say something real quick?
CONAN: If you can. Go ahead, please.
ANNE: Oh, I'm sorry to interrupt. I think also that there are - at least I've experienced that there is an issue between the willing caregiver and the caregiver who is thrust into it. I think that at least what we see in adolescents is that when they've chosen this and they've kind of decided that this is the role that they're willing to take, the re-entry is a little bit easier but the grief and loss is a little bit less compared to the people who've kind of been thrust upon it. And you were talking about the alternate sex, like a male taking care of a female, those types of things, I think that is extremely stressful for particularly the younger adolescents who are just coming to puberty. I find that it's extremely difficult.
CONAN: Anne, thanks very much for the phone call. Appreciate it. And I'd like to thank our guests, Connie Siskowski, who joined us from Fort Lauderdale, founder and president of the American Association of Caregiving Youth. Thank you so much for your time today.
SISKOWSKI: Thank you.
CONAN: And Professor Steinberg, thanks as always.
STEINBERG: Thank you.
CONAN: Laurence Steinberg, professor of psychology at Temple University. Stay with us. It's the TALK OF THE NATION from NPR News. Transcript provided by NPR, Copyright National Public Radio.