Dr. Janice Hooker Fortman
[Music] uh [Applause] [Music] good morning good afternoon good evening wherever you are in the world it’s Dr. Janice Hooker Fortman with Relationship Matters TV. I want to say happy new year because I haven’t seen you since before the new year. I hope everyone had a pleasant new year. I just hope that whatever goals that you have set, I’m not going to say resolutions, but whatever goals you have set, you have started on those goals and you are already almost a month in.

I know you have at least started some of your goals. I am very happy to see you. This is a new season of Relationship Matters TV. I’d like to just really thank all who have been with me for the last couple of years. You know, last year I was on my soapbox and unfortunately, I have to get back on my soapbox now. You all know what my soapbox is, what I’m gonna talk about, okay? I was hoping that at least now I could take off my mask, but I can’t. As a matter of fact, I can’t even wear my cutie tootsie little mask that I bought, you know, with all the fancy designs and the rhinestones and the sayings on them because now I know that because of this new variant, I have to wear the what, K95, N95 or whatever it is, you know?

And why is that? You know why? Because so many of you out there in my audience still won’t get vaccinated. We will not be able to get rid of this pandemic unless we all have our shots, our vaccines, or we are masked up. And you know what? I explained to people about a virus. A virus is a living organism and what do living organisms want to do? They want to live, they want to survive. And how do they survive? They mutate. So now we have Omicron because it mutated.

And now what did they say? I mean, it’s airborne. At least the other, the Delta was like droplets. This is airborne now. Hopefully, there’s not another variant that’s going to come along. I keep hearing that there are, but please, please, please get vaccinated. You don’t want to get it. And now I hear what people say, “Well, people who have gotten vaccinated, they still get it.” Yeah, but they don’t die. Okay, so I’ll step down off of my soapbox.

Oh, and another thing, we had planned a cruise. It was canceled twice. It was canceled last year, now it’s canceled this year. People, I want to go on a cruise! Okay, so now I’m going to get down off of my soapbox and talk about a very important issue that a lot of us really, I don’t think ever really thought about, and it’s about children who are caregivers.

Now caregiving takes many forms. It can be from helping with younger siblings, brothers and sisters, you know, by maybe they have to perform household tasks that are normally done by the adult in the house. They may have to cook, provide personal care to a disabled parent, a disabled adult, an ill adult. And often child caregivers are giving care to an adult, and this places young people in a precarious position of being in a position where they have to be quote a parent.

So there, and I did some research, and there are vast numbers of children and teens who are caring for siblings, parents, or elderly relatives at home. So today’s guest is Dr. Feylyn Lewis, and she is going to talk to us about this situation about children who are caregivers. So I’d like to introduce you to Dr. Feylyn.

Feylyn Lewis
Hi, hi Dr. Jan! How are you?

Dr. Janice Hooker Fortman
I am just great! How are you?

Feylyn Lewis
I’m doing well, thank you for having me.

Dr. Janice Hooker Fortman
Oh, you know you are so welcome. When I read about you, I never ever thought about children being caregivers because most of the time when you think of a caregiver, you think of an adult who’s a caregiver for a parent usually or, you know, someone that’s ill, an adult ill in their house. So tell me, tell me about you.

Feylyn Lewis
Sure, and so again, thank you for having me. I am an international researcher in the field of caregiving, but I wasn’t always a researcher. I actually grew up as a youth caregiver for my disabled mom. When she was 11 years old, she was diagnosed with degenerative disc disease. So that means that the spongy part of your spine starts to deteriorate over time, and then that can cause chronic pain and stress on your bones.

She went to have what’s really a routine surgery for that condition, and unfortunately, the surgeon took out bones from her spine that he shouldn’t have. And right, so that left my mother permanently disabled. She was meant to be in the hospital for just a weekend, but she ended up needing to stay for weeks on end. She had to go to rehab and learn how to walk, and she was unable to return back to work as a registered nurse.

So that completely flipped our lives upside down. I have an older brother named Feral. He’s seven years older than me, and at the time he was entering into his sophomore year at college. He came home that weekend of her surgery thinking he’d be home for just a weekend, but because the surgery was performed incorrectly, he ended up staying home indefinitely. So that meant that my brother and myself, we began caregiving for my mother.

We didn’t have any outside help. We didn’t have social workers, nurses, home health aides, any of that that you might think of would be necessary for taking care of someone who, you know, is really learning how to walk and is actually disabled. We didn’t have any outside help, and we didn’t know any other children and young adults, in the case of my brother, like ourselves. So that’s actually how I really came to know myself as a caregiver.

I went on and got a master’s degree in counseling, and it wasn’t until I was doing a mini dissertation that I actually talked to my advisor about the subject of youth caregiving, and I realized that there are millions of other children and young adults in the country just like myself, just like my brother, but yet no one knew about us. We were unsupported, unrecognized, and clearly hidden from services. So that’s actually how I decided I would dedicate my career to furthering research, policy, and practice for young caregivers.

Dr. Janice Hooker Fortman
Oh my goodness! And so your dissertation was what? The research that you were doing, finding how many children and so on?

Feylyn Lewis
Right, so after I had my master’s degree in counseling, I actually moved over to England where there is the world-renowned expert in youth caregiving. He actually coined the term “young carers,” which is the term that’s used in Europe and Australia and around the world. I went over there about eight years ago, and I actually started my PhD where I was looking at the identity development of young adult caregivers in the US and the UK.

So I was really concerned about the ways your identity is shaped by being a caregiver from a very young age and throughout young adulthood. So that’s how I started to get into my research, is actually doing a PhD, being able to get out, meet other young adult caregivers like myself in the US and then in the UK, and then that also then furthered me on to do more research. I did a post-doc where I did work with European adolescents who are caregivers in the mental health, and then up to present day where I’m continuing to do research internationally.

Dr. Janice Hooker Fortman
Okay, okay. So you said that there are millions of children who are caregivers to adults, and when you say millions, are there more here in the United States than there are in Europe?

Feylyn Lewis
That’s a great question, and I wish we knew the answer. Part of the problem with us in the US is that it is a very hidden, under-researched topic. So we’re about 30 years behind the UK in terms of research, policy development, and social care and healthcare practice. So the numbers that we have currently, we’re looking at 5.4 million young caregivers in the US.

And so when I mean young caregivers, I mean children and adolescents. That’s not even counting young adults, so those older than 18. We only have actually one national study, and that was back in 2005, where that found about 1.3 to 1.4 million young caregivers, but that’s the only piece of research that we have in the US on a large national scale scope. So we’re very behind the rest of our counterparts in Europe in terms of figuring out how many of these young people actually exist.

And when I say 5.4 million, that’s actually a very low estimate.

Dr. Janice Hooker Fortman
You know, and my question was how do you find them? You know, how do you know when a child is a caregiver in the home? You know, either just taking care of siblings because, you know, a parent might be incarcerated or, you know, in the home but a drug addict, you know, or just disabled. How do you find these kids?

Feylyn Lewis
The children are right under your nose, and as you mentioned, they’re in all of those homes. So anytime you might have the presence of parental or siblings or grandparents or aunts or uncles who have a chronic acute health condition, you’re going to see some aspect of youth caregiving in the home. Unless there’s some outside formal support coming in, there’s likely going to be children who are going to be helping out in the home.

It may be on a continuum, so you know, they may be cooking or doing chores or maybe helping with medicines. It may not be to the degree that some families, like me and my brother, were doing, but if there’s disability, illness, substance addiction, mental illness even in the home, you can likely assume, and if there’s a child there, that child is likely performing some type of caregiving role in the home.

Dr. Janice Hooker Fortman
Oh, and so now you say the United States is behind. Now how do, how in Europe, where you were studying and doing your research, how do they identify the kids? Is there some, is there a formal way they do it or is it informal? Is it the teacher, the next-door neighbor? How are they identified?

Feylyn Lewis
So in England, they try to actually use all of the things you mentioned. So you may have a social worker who may come in the home, and whether that’s an adult social worker or a child social worker, and their task of identifying who actually in the home has a caregiving role. You may find this is particularly true in Scandinavian countries that if a parent or grandparent is admitted into the hospital, perhaps right before they’re discharged, they may be asked by the medical staff, “Well, who’s going home with you? Is there a child at home with you?”

And that’s a way of hospital staff identifying, “Oh, there’ll be a youth caregiver in that home once we send you back, once we discharge you back to your home.” You mentioned schools, and that’s also a very important part of identifying youth caregivers. So you can use some survey tools that have been developed by other researchers, including by my old advisor Saul Becker, and you can also use just simply asking questions.

If you’re a teacher or you’re a school administrator or school counselor, if you see a student who’s maybe falling asleep in class or absent or frequently late or perhaps maybe just not seeming right, ask some questions. Ask what’s going on at home. That’s a really easy way to find out if there’s even caregiving going on in that child’s home.

Dr. Janice Hooker Fortman
Okay, so now let’s look at the child and the effects that being a caregiver, the effect that it would have on the child. Let me ask you a question. Do you think it affected you emotionally or health-wise or anything like that?

Feylyn Lewis
Absolutely, Dr. Jan. Yeah, and I felt like many other youth caregivers do. Definitely very anxious. I always worried that my mother simply just wouldn’t survive. Like I remember growing up praying every single night that God would take away her pain and give it to me, and I would wake up every morning and realize that that didn’t happen.

And I just always worried so much about her health and our finances because we had a huge financial impact from her being able to work as a nurse and then no longer having that income. We had a very significant financial hit in our home. I’d also say as well, you’ll hear instances of depression. I mentioned anxiety. What’s also particularly interesting in some of the research that I’ve been doing lately is issues of self-harm.

So children and adolescents actually having thoughts about hurting themselves because of the severe mental distress that they’re under. So some very serious mental health impacts that are being experienced by youth caregivers. In terms of physical health impacts, you may have children with back strain because they’re lifting their parent or their grandparent, you know, from a chair to a bed, that type of thing. You may also have children experiencing headaches because they’re not sleeping.

All sorts of physical and mental impacts you’re likely to see with a child who’s doing some caregiving in the home.

Dr. Janice Hooker Fortman
And as far as relationships are concerned, as a child being a caregiver, does this change the way they might interact with other adults?

Feylyn Lewis
I think first of all, it actually does impact the way the children can relate to their parents or to the person that they care for in the family. So if it’s a sibling or a grandparent, I think the dynamics really are changed. You may find that the family tends to focus on the ill or disabled person in the family, so children or adolescents may feel overlooked in the home.

You know, if there’s something going on with them at school, maybe like bullying for instance, they may actually keep quiet about it because there’s so much other things going on in the home. So they may find themselves not speaking up and being a bit more quiet about things that are really concerning them because of all of the huge massive life events taking place in their home, particularly with the person that’s ill or disabled.

You may also find youth caregivers may experience some guilt. So if they, you know, they’re getting older and they’re thinking about whether or not they can go off to college or very steer leave the home, they might feel quite guilty about leaving the person that they care for, especially if they have younger siblings in their home who may uptake a caregiving role.

But that’s kind of the focus on those in the family. You asked me if there might be an impact to those other adults that they’re around. I certainly have found with my research that children, and particularly more adolescents as they’re getting older, it does actually impact the ways that they choose friends and the ways that they choose romantic partners.

Dr. Janice Hooker Fortman
Really? Really? Okay, so when you say impact the way they choose friends, I mean, what’s the impact? Impact how?

Feylyn Lewis
So in the case of choosing friendships and choosing those that are more platonic relationships in their life, you might find that youth caregivers tend to find other children and other adolescents who are caregivers themselves. Other children who experience trauma, poverty, someone at the bottom line is someone they can relate to, and that’s who they’re looking for.

Someone that they can trust, someone that they can actually disclose about what’s going on behind the scenes at home. So they also tend to have smaller friendship circles, and in the growing age of more and more technology, if they have that available to them, you may also see caregivers having online friendships as well.

One thing to point out and remember with that particular group is that youth caregivers are often bullied in school.

Dr. Janice Hooker Fortman
Really? Right? Well, why is that exactly?

Feylyn Lewis
That’s not enough, and because of all the other impacts I’ve mentioned, they’re often at risk for bullying. Youth caregivers can be seen as being different in the classroom, so that may make them a target. So if they have a parent that’s mentally ill or a parent with a physical, a very visible physical disability, so maybe being in a wheelchair or using some type of military aid, that might be a reason for kids to pick on them because they’re different.

And you know, kids of that age may not understand the diversity of families and what might happen in family life, and that might be a reason why kids are bullied. It could be, yeah, it’s terrible. In fact, on top of all that about mental health and physical health, we do see, and this is across the world, children who are young caregivers are often bullied.

Dr. Janice Hooker Fortman
You know, that’s something I never thought of, and I would guess that if a child is being bullied in school, that’s a way, I guess, the counselor or the teacher can find out whether or not that child is a caregiver, nonsense, right? All about asking questions, right?

Feylyn Lewis
And do you find in child caregivers that there is resentment towards the parent or the or it could even be siblings?

Feylyn Lewis
There can be, particularly if that child or adolescent or young adult has felt that they’ve had to sacrifice and give up part of their childhood. You know, I think that can happen in really any kind of family dynamic where they feel like something that maybe was the norm should have been part of their normal childhood experience. If they felt like they didn’t have that, then yes, I think it’s possible for them to experience resentment.

But I should say, Dr. Jan, in the midst of all of the, you know, very terrible news I’ve had to share about this group of children, and I do want to remind us that what you might hear when you ask a youth caregiver is they do have a lot of love, bonding, attachment to the person they care for. And yes, they often are stepping into that caregiving role because there’s no one else to do it, but they will also say it’s because, well, they love their mother, they love their grandparents.

It’s out of this sense of duty, and of course, they would do that for the person that they love and their family. So I think that’s also important to think about is that yes, they might feel guilty, they might have resentment, all these other negative emotions, but it also may be sitting just as equally with love and care.

Dr. Janice Hooker Fortman
Oh, okay. This is such an interesting subject matter because it’s something that I don’t think we ever thought of. We have a comment from Sandy Bernie in it. She says, “I knew of three young men who cared for their mom. Their dad worked, and these guys did everything for their mom. She was still having periods, could not be moved at times. They cooked, washed, and cleaned and still attended school.”

This, she says, this family was awesome, and the mom was in her early 30s. They took care of her until her death, which was over 25 years. Oh my goodness! Wow! Maxine says, “Definitely, that’s amazing. My goodness gracious!” Oh, I just never thought of this. I never thought of a caregiver being a child. I, you know, I didn’t know that it was so prevalent. That’s the thing.

When you say millions, and I would imagine that now during the pandemic with parents getting the virus and maybe coming home ill, coming home ill and the children at home, and that they do have to end up sacrificing, so to speak, and taking care of a parent or with parents gone because of an illness, taking care of siblings. Oh my goodness!

But Dr. Feylyn, I’m going to take a quick break, and we’ll be right back to really talk some more about, I’m just amazed about child caregivers. So we will be right back. [Music] [Music] [Music] [Music] do [Music] [Music] oh [Music] from right to left and every angle in between know what I mean? In this day and age, so many seem like they lost inside a world and held captive in a dream. A glimpse of mediocrity sacred for the team, and even though this path is long and this place is unforeseen, gotta keep your feet moving, filling spaces in between, seeing places in your dreams if you can place them by your means. By all means, go back to sleep. The path is steep. There’s no rest for the weary if you intend to reach peaks. It gets deep. Come on, it’s infinite. We still climbing. Yes, yes, you are, and thanks for the positive vibes, but I still got a mountain to climb. Just take it one step at a time. I’ll never give up, ’cause when it’s all said and done, it’s what I’ve done, and now I push myself to the end to push myself. [Music]

Dr. Janice Hooker Fortman
We are back with Dr. Feylyn Lewis talking about something that I don’t think we ever thought about, and that’s child caregivers. I have a question from Gwendolyn Dunbar. She says, “The family dynamics are very important. Are the child caregivers being supported and appreciated? Have they been trained in the way to help understand and love the family members?”

Because she thinks it’s important because so many families do not.

Feylyn Lewis
You like to think that they are, but unfortunately, in many families, children are just picking back those caregiving skills, one, because no one else is there to do it, and two, they just do what seems natural. I want to be careful too in our discussion to make sure that we are not problematizing particularly mothers and disabled mothers with that, and that you can still be a very good parent, a very loving parent, and a parent that’s not neglecting your children and also be disabled and also be ill.

I want to make sure because historically there has been some tension between particularly those in academia and those more activist movements between those and the young caregivers research field and those in the disabled parents field, particularly disabled mothers’ field. I’m thinking that there might be some tension, and I simply don’t think that has to really exist.

I really believe that even if parents who are disabled, they love their children, and the children love their parents or grandparents or siblings or aunts and uncles, whoever they’re caring for. I think that is really important to mention. So I’m glad that that particular audience member mentioned about the child feeling appreciated and loved because that’s what I have also seen in the families that I’ve been able to interview.

Dr. Janice Hooker Fortman
Of course, I would think so because, like you said, they’re not disabled because they want to be, and they’re not ill because they want to be, and I’m sure that they appreciate the fact that their children love them enough to really take care of them. So it would be amazing to me, and problematic to me, that the parent would not see that the reason the child is taking care of them is because the child loves them.

And I know I would think that the parent would, you know, I wouldn’t think that the parents don’t love their children, you know, in other words, because they are taking care of them.

Okay, I have two questions that came in. Let’s see, it says here, “Many young people are thrust into their roles of caregiving, but in a perfect world, how would you advise them to do it properly?”

Feylyn Lewis
That’s a fantastic question, and then one, if you’re in the academic sphere, it’s still actually being debated. There’s this question to say in a moral good society, in the perfect society, should youth caregiving even exist? That’s something, yeah, that’s actually a question that is really debated. You’ll see many researchers talking on that very issue.

I take the view, I haven’t completely made up my mind, I’m happy to admit that. But what I would say though is I think it’s probably unrealistic to think that you could have a parent or grandparent, someone you love in your home who is disabled or ill or sick and not have a child or the other members of that home doing some sort of caregiving, even if you have outside help coming into the home.

I think that’s probably unrealistic, and I also want to say that even when we have services coming to home, that can add another element of time, energy, duties, work as well, coordinating home aid workers into the home. So there’s a lot of different issues in terms of that. So I probably take the view that even if, and even in a perfect world, if there’s illness in a family, I imagine there’s going to be some type of caregiving going on.

I just want us to move to a place in society where children are able to still be happy, thrive, go on and do well in school, go on to college if that’s what they like to do. I just want to make sure that children are happy and their well-being is still intact even if they are continuing to help out the person that’s ill in their family.

Dr. Janice Hooker Fortman
I would think so. I would think so. And when you said about, let’s say, another person coming in, I can remember being an adult caregiver for my mom when she was with me. When you talk about scheduling and your emotions and even sometimes the guilt feelings when you have to leave, oh my God, to go somewhere.

And just, so, and I think about how it is for an adult, and to me, being a child, it would almost be twice as difficult, you know? And it’s, you know, to me, when I’m just thinking about being a caregiver, it does take a lot of love. It takes a lot of patience.

So I really, I don’t want to say I feel sorry for child caregivers, but I think that it brings out the heart. I mean, it really brings out the heart. I had another question that came in, and it’s the question is, “What is the worst-case scenario that you know of where a young caregiver harmed themselves because they cared, they were caring for someone else?”

Feylyn Lewis
So I actually consider every worst-case scenario when I hear of a child or an adolescent or young adult, anyone of any age who’s thinking about harming themselves or who actually have harmed themselves. That is what I, for me, as I used to work as a therapist, that is my worst-case scenario. I want us to get to a place where we can make that something that doesn’t happen.

You know, if we can lessen the load that youth caregivers or caregivers of any age really are experiencing to where they don’t get to that point where they have turned inward, all of that stress and anxiety and depression, all of that inward to where they’re hurting themselves, that’s what I want to see us to move to.

So yes, I think it is when you want to think about some of the more shocking aspects of caregiving, self-harm is certainly one of them. And even as well, the more darker side of those emotions, so you may, and I want to say in a very small, very few instances here of when you ask about those dark negative emotions, even thoughts of harm to the person that they care for.

And they may not follow through with that, right? So I don’t want to cause any alarm, but just thinking about how distressed they are, that is something that has come up when I have done interviews with adolescents and thinking about how just, again, severely under distressed they are.

Dr. Janice Hooker Fortman
Right, right. So do you suggest that there should be some kind of program, let’s say, that emanates from school districts or schools where that’s a part of something that the teachers and administrators should look out for?

Feylyn Lewis
Absolutely! There’s a fantastic model that we can replicate around this country. It’s with the American Association of Caregiving Youth. It’s based in Boca Raton, Florida. It’s actually our only real national organization in terms of a nonprofit that’s out there trying to support and raise awareness for children who have a caregiving role, and it’s led by Dr. Connie Siskowski.

And I know her well, and I know her work very well. She actually has a program where they have social workers and their trained staff getting into schools, helping teachers identify who might be a youth caregiver in the schools in the South Florida area. And they are also working to be able to make that program something that’s national.

That’s part of our advocacy work that we’re doing now, and I’ve seen that work replicated in the UK. They have hundreds, literally hundreds of dedicated charities for youth caregivers, and that gives them a chance to have respite, to meet other children who are like them who have a caregiving role, a chance just to be children and relax.

One of the things I’ve been really privileged living in England in the summers, I help volunteer at what’s called Young Carers Festivals, and they bring in children from all around the country where they have like amusement park style rides, and they get to camp, and they just get to have a weekend away from really more adult responsibilities at home.

And those are things that I’d love for us to see here in the US. But when I mentioned those kind of fun things, those are great, but those are kind of short-term. I have a bigger dream, Dr. Jan.

Dr. Janice Hooker Fortman
Tell me your bigger dream!

Feylyn Lewis
No, bigger dream! I want to see policy change. We need to get the Department of Education involved. We need to put out surveys across all schools in the US. We need to get some real numbers about how many children have a caregiving role in our country. We need to get the Administration of Children and Families involved with the White House. We need a youth caregivers task force.

There are so many potential stakeholders and agencies who there’s real relevance for youth caregiving that should be involved. Again, I’ve been privileged to see how the UK and starting a little bit more in Europe and Australia where they do have supportive policy. They actually name in federal laws about supporting youth caregivers. That’s what I want to see here in our country.

Dr. Janice Hooker Fortman
Okay, so what are you doing about it?

Feylyn Lewis
That’s right! So for me, continuing to use my voice. I thank you, Dr. Jan, for bringing me on today to continue to spread awareness. This is what I love doing, and I meet so many other people who say, “I hadn’t heard of youth caregiving before. Do I know one?” And I say, “You probably do if you know someone’s sick or disabled and there’s a child in their life.”

So continue to speak out, sit on numerous advisory boards, and continue to do research. You know, I had the opportunity when I was doing my PhD to meet with my Tennessee congresswoman in DC, and I gave her the same talk I’ve given you today about this is their needs, this is the impacts, and she said, “Well, we need more research for me to write a policy bill to support these children. I need to know more research.”

Research is what informs policy creation, so keep doing that research. So I have my hand and as a researcher advocate is what I call myself. I’ll keep doing the research, but I’ll also keep advocating. I’ll keep writing, I’ll keep vlogging, I’ll keep coming on and talking to wonderful advocates like yourself, Dr. Jan, to continue to use my voice because I love, I know what it’s like.

I know the loneliness, the anxiety the children experience because I experienced it myself, and I’m still in a caregiving role myself now that I’m older as well. So I now into the more millennial age of caregiving, and it’s certainly something that has long-lasting impacts, and it’s just one of those for me missions in life that I’m just happy to dedicate all my energy towards.

Dr. Janice Hooker Fortman
Wow! I think that’s wonderful. Sandy asked another question. She says, “I wonder what I guess caregivers become later on in their marriages or as a parent.” So in other words, how does it affect later on their marriages and parenting?

Feylyn Lewis
Great question! So in my PhD study, that came up actually. So I mentioned a little bit earlier tonight about what happens when youth caregivers try to make friends. That also has some impact when they seek romantic partnerships. So some of the research that I found was that particular group of young adults and adolescents, they may actually delay getting married and wanting to have children.

And what I was told through my interviews with them, they would say that they felt like growing up they actually already had a child, and that was in the form of their parent or the person they cared for. So now that they were older, when they were in the 18 to 25-year-old age group, they wanted to kind of postpone having children of their own for as long as possible.

You’d also find in terms of the partnerships that they choose tend to also mirror their friendship. So they tend to also find other youth caregivers or other people who are caregivers to be partners with. But also what was interesting is they would use this for dysfunctional, that’s not my label, that’s a word that they would use, but they would say that they tended to almost attract other people who had addiction or disability or any other kind of chronic kind of health condition.

They seemed like they just almost were a magnet, and they’d find each other, which I think is really interesting. I’d love to see some more research kind of about that, maybe the ways that we unconsciously choose romantic partners based on our caregiving experience. I think that’d be really an interesting thing to kind of learn from.

So yeah, there’s certainly, to answer the question, there certainly are lots of impacts I think in terms of the partnerships that you choose later into life.

Dr. Janice Hooker Fortman
You know what? And that was something here that I was thinking about, and I thought, I wonder would caregivers, especially long-term caregivers, if you know, children to adolescence to young adults, would they choose other caregivers or if they would get into a relationship where they had to be caregivers or even if they didn’t have to be caregivers, but they would take, excuse me, they would take on that role, you know what I mean?

That that would impact their relationship or impact their marriages and the feeling that they had to caregive, so to speak, right? That’s like taking care of someone that’s like they find themselves in those relationships.

Feylyn Lewis
Yeah, that came out in some of my research as in my PhD study.

Dr. Janice Hooker Fortman
Really interesting!

Feylyn Lewis
Yeah, that that’s very, very, I thought about that. That’s very interesting. You know, the psychological impact when they become adults and when they are no longer have to have that role as caregivers. And so I’m wondering also, let’s say at the end of their caregiving journey, what takes place in here and in here?

Feylyn Lewis
Right off the bat, I’d say grieving, actually grieving that loss of the person that they cared for. Yeah, so that role, and that’s been a part of their identity likely for many, many years and for some as long as they can remember. And then when they lose that, whether it’s because they’ve left the family home or because the person they cared for has died or in a more positive way, maybe they’ve recovered, you can experience actual symptoms of grief.

And that’s when I think therapy is a really important part. And actually, to be honest, I’d say youth caregivers from even early ages should be in therapy. I think that’s a really healthy way for them to process their emotions they’re experiencing and give them a safe, trusted person to talk to. But especially when that caregiving role ends for whatever reason, I certainly think that they should be involved in therapy, mainly because again, they experience grief that seems to be quite common once that role ends.

Dr. Janice Hooker Fortman
And I would imagine they would be lost, so to speak, you know what I mean? Because that was such a significant part of their lives, and it’s like, okay, now that was who I was, and so now who am I? Because now I’m no longer a caregiver, so where am I? Who am I? You know, I just wondered about that.

Okay, we had another question that came in here. It says, “What support does a young person receive when they have other siblings who won’t help out with the caregiving of a loved one?”

Feylyn Lewis
You hear that question quite a bit when it gets to older caregivers, so that’s interesting to think about when they’re younger. Well, if I was in my having my research right on, you might hear this term called family group conferences, meaning you get everybody in the family all together in a room, and you sit on the sofa, and everybody gets their feelings out, and everybody gets to say what they want and need.

But in reality, Dr. Jan, that often doesn’t happen. And families, and that may be what we can suggest, and maybe in some ways that may actually work and maybe may be helpful. But in practice, I think silences tend to happen. You tend to keep things to yourself, grievances you don’t really discuss, and those emotions of, you know, either being angry or resentful for a sibling or whoever’s not helping, those often don’t get discussed, and all of them don’t get aired out.

And I think that has a lot to do with not wanting to hurt feelings or, you know, confronts or that type of thing. So I would say, I suppose if there was someone in that speaker situation, you know, I would say first remember that you are valuable. The time and energy and the contributions you make in your family are incredibly important, and you do have a right to live your life, to seek things that interest you and to do that.

But I say you have that right, but it sits in the midst of other responsibilities, so we have rights and things that we may not always be able to act on them. So I want to recognize that too. So I’d also say if you feel like you’re able to have a conversation with that sibling who isn’t healthy, go for it, try it, pick your moment, suppose be smart. You know your sibling best how they might be receptive, maybe over a nice meal that might be a good way to do it.

That’s what I would suggest, but I also recognize every family is different, and the reality is sometimes siblings won’t help.

Dr. Janice Hooker Fortman
True, yeah, sometimes they won’t. That is a reality for caregivers of all ages. You know, I hear that we always say there is always the one. You know, it can be three siblings, it could be ten, but there’s always the one who takes care of.

Now, I would imagine that with children, of course, I don’t think that would happen in that sit around and have a family conference, but I think that if a, if you find that there is a child who is a caregiver and they are also taking care of their siblings and they feel that their siblings are not helping out, you know, or contributing in some kind of way, that a part of a program would be to recognize that and have maybe have, I guess, you know, a counselor or social worker or someone to come in and pull the siblings together and really talk about the dynamics of that.

I think that would be great as a part of a program. Now that I’m learning so much about it, that I would think that that would really, really be helpful as far as taking the stress maybe off of the one who is really, well, let’s say the older sibling, but I would imagine that sometimes it might be even the youngest one. Have you seen that?

Feylyn Lewis
I actually have, yeah. Some of the interviews I had in England, I interviewed some young adult caregivers who they were the younger child, and their older siblings declined to participate as a caregiver in their family for whatever reason. Maybe it just was a simple choice they didn’t want to do it, but yet that meant that that younger age caregiver is the one who had to step up in the family.

And I think you make an excellent point that it would be great if you had that outside person who could intervene, and within families like that when someone’s not, if to use the phrase, you know, pulling their fair share and they’re for loading the family, that would be ideal and great.

But as we know, you know, that may not always happen, and it is a bit tricky as well with children because we still get, we still kind of come into that question of should children be caregivers? So if there’s another sibling who doesn’t, so what I would imagine that would happen if we did have that program where you could have someone who could step in and intervene, they would probably ask, is there anyone else in the family sphere who’s an adult who could take on more?

So that lessens the burden of the child, the children, and that’s likely what I suspect might happen.

Dr. Janice Hooker Fortman
Okay, so now are you still doing research or are you of children or parents or?

Feylyn Lewis
So exactly, I want to know what your role is now.

Feylyn Lewis
Okay, great! So I’ve hung my therapist hat. I’ve got my credentials, but I’m now in the research vein of things. So yes, I still continue to sit on advisory boards and board of trustees for various charities, both in the UK and in the US. I continue to do journal article writing about the subject, and again, continuing to speak out and use my voice.

I also work part-time as a caregiving.com champion where I’m a spokesperson in my local city here in Nashville for other caregivers. So I’m continuing to use my research advocacy skills, and I’m always looking for other opportunities. If there’s anybody out there in the audience, feel free to get in touch, and we can think of a way to connect.

I love to go to schools. I love to go to non-profits and talk about youth caregiving and spread awareness, but I, as you said, Dr. Jan, I really consider this my lifelong mission.

Dr. Janice Hooker Fortman
Okay, okay. And if they want to contact you and really get more information about what you’re doing, it’s drfeylynlewis.com, right?

Feylyn Lewis
Okay, you need, listen to me, right? You need to get on that soapbox, and you need to travel all around the United States and into school districts. It would just be so wonderful to have a program like this in the schools.

And I’m an ex-school teacher. I’m still an educator, but when I look back at just being in the classrooms and just being, not an official counselor, but listening to children, it would just be great if that was a program that was in the school because especially now, especially now, because so many children are, we are seeing are having mental health issues.

And because of what’s happening in the world, because of the pandemic, but also because we’re piling that on to whatever else is going on in the home, especially if they are caregivers, especially.

So do you have any parting words for us, some parting words of wisdom?

Feylyn Lewis
Well, I would say we all have the role of identifying these caregivers. Ask questions. If you know someone’s been sick with COVID, ask about the children in the home. They’re likely performing some caregiving duties because their parent or their sibling or grandparent has had COVID, and especially if they’ve had long COVID.

So those are ways that even if you’re not a school teacher or social worker or a nurse, even just being your regular self, you can learn and you can support youth caregivers where you are. And I’d also invite you again, look at my website, look out some of the research we’ve been doing, and continue to educate yourself, particularly if you are an educator or you are another researcher or you are a social worker.

You or those people who we say are gatekeepers, like you can help support youth caregivers in the work that you do. So I thank you, Dr. Jan, for having me.

Dr. Janice Hooker Fortman
Thank you so much! You have educated us, and I’m just so grateful that you are in that particular sphere. I mean, it’s something that I just never thought of, and I’m sure quite a few people in my audience never thought of that.

And I think it’s just wonderful what you are doing. I really do. I really do. And, you know, I’m going to be an advocate for this because I still have contacts in the Chicago Public School System. We really need what you’re talking about and just be, if they will look into the program in Florida and bring that here because it is so needed.

Feylyn Lewis
Yes, absolutely!

Dr. Janice Hooker Fortman
So thank you so much for coming. I really appreciate it, and just keep on doing what you’re doing. You’re doing God’s work. Keep on doing God’s work. I do believe that.

Feylyn Lewis
Thank you, Dr. Jan.

Dr. Janice Hooker Fortman
All right, you have a blessed rest of your day.

Feylyn Lewis
All right, bye-bye.

Dr. Janice Hooker Fortman
Wow! I am really full and concerned. So now it’s like I’m wondering about the kids that I knew and didn’t know what was going on in their homes. And I think that’s something that we should all really try and be aware of.

So this is Dr. Janice Hooker Fortman again with Relationship Matters TV in our new season, and I want to thank all of my audience for coming in and viewing and the questions and the comments, and I will see you again next Thursday.

Now, if you would like to be a guest or you know of someone who you think would love to be a guest and their content is something that we all would like to know about, you can reach me at relationshipmatterstv@gmail.com. That’s relationshipmatterstv@gmail.com.

I want everyone to have a beautiful, blessed rest of your day. Alrighty, see you later. Bye! [Music]