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Episode 22: Supporting Young Caregivers: The Overlooked Caregiver Demographic

Caregivers Out Loud

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What difficulties develop when a child becomes a caregiver to their own parent?

Studies show that young caregivers make up at least 12% of Canadian youth. One of these young people is Kristie Mar. At just 16 years old, Kristie set aside a significant part of her adolescence to become the sole carer for her mother, who was navigating schizophrenia and anorexia. The medical professionals, counsellors, and groups from whom she sought assistance, however, never gave her the title of “caregiver.” As such, it took her years to think of herself in this way or discover the resources that search term could unlock.

Today, Kristie is a medical student and an active participant in this community. She wants to help increase awareness and resources for fellow adolescents who are thrust, so often unprepared and unsupported, into the role of caregiver for their family members.

Hear the difficulties a young caregiver faced, caring on her own, including: 

  • The impact of expanding the narrow definition of “caregiver” to better identify young caregivers
  • Where to uncover resources that help reduce the deep sense of isolation
  • The many facets of childhood that are lost to young caregivers
  • Strategies for maintaining mental health while balancing childhood and a very adult responsibility

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Quotes

  • 7:03-7:22 “My sister when I was in high school actually saw her and said, she doesn’t want help, there’s nothing that we can do. I’m sorry. And so it was hard to hear over and over again, there’s nothing we can do, there’s nothing we can do. In a way, I’m hearing, you’re on your own again, over and over.”
  • 7:39-7:48 “ When someone has mental illness, you’re not doing the typical caregiving roles that you see on TV and online.”
  • 10:42-11:15 “This narrow definition still exists, like of what a caregiver looks like and what they are. And what they do. And I think that it’s still quite harmful, because I know I’m not the only young caregiver out there, but I bet I’m probably one of the very few that you can contact, because I use the word because I know, because I taught myself, and it took me seven years to get there. But there’s other people out there that are doing what I’m doing, or more or a bit less, doesn’t matter, but they don’t know it, and it’s really sad that they can’t find those resources, too.”
  • 15:40-15:58 “Resources, while they’re very, very good they’re not always very diverse. They don’t cater sometimes to all spectrums of individuals coming in with different backgrounds, different family dynamics, different ages, different cultures.”

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Transcript

[MUSIC IN // INTRO]

VOICE-OVER: You’re listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel.

[MUSIC DEVELOPS]

BILL: When a child becomes the parent to their own parent, what complexities arise? The nature of family dynamics presents blurred lines when a child takes on any parental caregiving responsibilities. They often feel they must accept the obligations because they are family. Many people, even the medical and professional community, may still call them a daughter, son, or another family-related name, instead of identifying them as a caregiver.

In 2012 the Vanier Institute reported 12% of Canadian youth, aged 12 to 17, are in a caregiving role. Yet, we can also presume that the percentage may be higher because many young caregivers aren’t able to identify themselves in this role, particularly at a young age.

Today’s episode highlights the hidden struggles and benefits of being a young caregiver. We hear from Kristie Mar, whose caregiving story starts around the age of 16 when she realizes her mom’s erratic behaviour with schizophrenia was pulling the family apart. Kristie became the sole caregiver which eventually shaped her commitment to improving caregiving resources.

Currently, as a medical student at University of British Columbia, Kristie is passionate about making healthcare more patient and family-centered. Through her studies and involvement with healthcare discussions, she hopes to raise awareness and support while making a positive impact on other young caregivers like herself.

So let’s start with her early days when it became apparent to Kristie that she was going to have some responsibility for the care of her mom.

[MUSIC OUT]

KRISTIE: So at the time I was in high school, I was about 16 and I had just started the 11th grade. And I remember seeing her not be herself for a long time already.  I think it had been a year.  Or two in the making when things seemed off.  She was more forgetful, more erratic. But I kind of dusted it off. And I thought, it’s going to go away. And she got sicker and sicker to the point where her weight loss was really noticeable.  Her anorexia nervosa was the first thing that started to catch my eye.

BILL: Somebody had diagnosed her then. She had a diagnosis at that point?

KRISTIE: She had a preliminary diagnosis by my family doctor and by counselors who saw her briefly. But it was the weight loss that really scared me in the beginning and it made me realize that she’s sick and it’s not a phase, it’s getting serious. So I went to my guidance counselor when I first started to have this realization, there was not much help. There was some referral to eating disorder programs in St. Paul’s Hospital, but within a click of a button, I could see that those programs were not made for someone like my mom. It was made for someone who wanted help, wanted to get better and my mom didn’t think she was sick. I think that’s a really important thing to add in. She thought that we were all too concerned about her. She thought that she was perfectly healthy. It was really hard to have conversations with her in the beginning because she was in denial.

BILL: Wow. Now, when you say we, do you have some sibs there in the house with you?

KRISTIE: Uh, yeah, so that’s a good question. My dad was also in the picture at the time, and so is my older sister. So we had these preliminary discussions somewhat together, and we kind of tried to gently talk to her in the beginning.  When it was apparent that nothing was going to change, uh, that she was really angry with us and that it seemed to be coming more from a mental health perspective.  That’s kind of when I saw my dad just disappear and I think people cope with mental illness in different ways, and I think it affects different cultures, especially.  I think that might have played a role, but I don’t know, because I’m not in his head, and that’s just what I’ve seen.  And my sister was kind of drifting in and out of the picture. She was a lot older than me at the time, so she didn’t need to be at home. 

So all of a sudden, I found myself in this role where I felt like no one else was there with me. And if I didn’t do it, then, who was going to do it?  Because she wasn’t in the mental health system. She didn’t have anyone watching over her. It was just me. And it was going to be no one if I didn’t stay there and try to help in any way that I could. And so I found myself, like you said, in this caregiving role all of a sudden. But I didn’t think I was a caregiver. I thought I was just her child. And I look back on it now. And it does make me quite sad. Because I was only 16 and I had no parental supervision those years. It was a big loss, and it was also a big change in my life because I had lost a parent. And then indirectly, I’d lost another parent. And then I became my own parent. And I had to watch this child. That, you know, was foreign to me. I had no idea how to do any of it. So it was a big change in my life at the time.

BILL: No kidding? Yeah. So describe then, as you probably were realizing the need for some more help to do this. How did your journey move at that time you began maybe reaching out for some help or what?

KRISTIE: Yes. So I started to nonstop reach out to different kinds of care professionals. I tried all the free programs that I could try. There’s not a lot, especially for mental illness in British Columbia. A lot of them just said that she’s, you know, she’s not suicidal, she isn’t, uh, at an immediate risk to herself, and therefore, she doesn’t qualify to be given anything other than voluntary treatment at the time. And at this point, my mom was very emaciated. She was very anorexic looking, and she was acting very odd. And this odd piece I didn’t figure out for years because she hid it really well, and that turned out to be schizophrenia. But I started to try all those free programs, and then I reached out to private counselors at some point, which was really difficult because I had no financial means to do so as a teenager, the few that I tried with my sister when I was in high school actually saw her and said, she doesn’t want help, there’s nothing that we can do. I’m sorry. And so it was hard to hear over and over again, there’s nothing we can do, there’s nothing we can do. In a way, I’m hearing, you’re on your own again, over and over.

BILL: Wow. Yeah. And how isolating is that? Yeah. So what were the next steps as you began facing this reality? I mean, obviously, you’re doing a lot of caregiving, probably doing some cooking. What sort of activities were you dressing her?

KRISTIE: That’s a really good question, because when someone has mental illness, you’re not doing the typical caregiving roles that you see on TV and online. And I think that’s also what’s made it much harder to classify myself as a caregiver. So, my mom can mobilize by herself, fine. I don’t need to help her get up in the morning, and I don’t need to help her take a bath. But what I did have to make sure that she does is, you know, take the medication that she was very highly non-compliant of. So I’d watch her take it and I’d count the pills and I’d make sure that she was actually telling the truth. Make sure that she went to her lab appointments like she said, when she was in the hospital, like you said, I was bringing her food every day because she refused to eat there. And no one told me that she wasn’t eating there. And she was already emaciated. A lot of the things that I found myself doing when I was 16, was actually, like, taking over bits of pieces of her life that she could no longer do herself, more so in the social sense. So she wasn’t calling anyone back. She wasn’t emailing anyone back. No one could reach her in like, the real world. 

And so all of a sudden, I was just kind of like a bit of a secretary, in a way, bringing people to come and see her, like her relatives who were really concerned, going to her job, trying to do the work for her because she was too sick to go at some points. So, it’s odd things and I think that’s what made me feel like, oh, I’m not really a caregiver, because I don’t spoon feed her dinner at night, and I you know, I’m not worried about those kinds of things.  And so no one never called me a caregiver. I didn’t call myself one. No one at the hospital certainly addressed me as one, family doctor who knew me my whole life and knew what was going on, didn’t call me one either.  

What ended up happening is that I wanted to write about it, and I needed to put pen to paper. I needed to put a term to it, and I didn’t know what to call it besides helping someone which doesn’t sound very good. And so I started playing around with the term caring for. I’m just caring for my mom. I’m a carer that was closer to a caregiver, but not quite there. So that’s kind of how it started. And about a year or two later, I started getting quite comfortable using the word carer. And, you know, Google was very lovely, and Mr. Google decided to understand that that was close enough to caregiving. And at some point, I actually started to search ways that carers can get involved in the community and it brought me to all the plethora of resources that I wish I knew existed, and I wish I knew that were appropriate for me to be contacting and using services for when I was in high school.  And at the time, I didn’t think so. I do think that this narrow definition still exists, like of what a caregiver looks like and what they are. And what they do. And I think that it’s still quite harmful, because I know I’m not the only young caregiver out there, but I bet I’m probably one of the very few that you can contact, because I use the word because I know, because I taught myself, and it took me seven years to get there. But there’s other people out there that are doing what I’m doing, or more or a bit less, doesn’t matter, but they don’t know it, and it’s really sad that they can’t find those resources, too.

[MUSIC IN]

BILL: Young caregivers play an important role in their families every day. They fill in caregiver gaps and help meet the needs of family members recovering from illness or injury, managing a chronic or progressive health condition or mental illness. Within the family unit, it’s this caregiver support that can often confuse their sense of identity. When a young person is identified as a caregiver, and then provided direction and resources to support them, it can be life-changing. The importance of naming their role can transform their reality.

[MUSIC OUT]

KRISTIE: Well, number one, I think it’s validation to the position that you’re put in. I think a lot of people don’t recognize the strain that caregivers go through. When something’s going on at home, and they feel like everything is on their shoulders, because in many ways, it is. Using that word and understanding that that is a heavy role – it’s incredibly validating when you’re speaking to someone about what they’re going through.

Number two, I think it’s just accessing, again, those resources, whether you want to contribute to them or whether you want to actually utilize them, that’s really important.  Because, like I said, there’s not a lot of free resources available, and I don’t know what it looks like for every other disease out there. I can only speak to my mom’s mental illnesses. But again, like, there’s not a plethora of, uh, resources that you can use to call and get some help and get some support. And so there are many caregiving resources that are wonderful, and they’re free of charge, and it’s a shame that you can’t access them unless you use the word caregiver and you know what to search for, or someone gives you that word and gives you a pamphlet and goes, here, take a look at these resources 

BILL: Or even ask the question, how can we support you in this? You know? What’s your specific need and how can we support it?

KRISTIE: Well, I’d say the one thing that I noticed again, it wasn’t necessarily a caregiving organization, but the one thing I did access when I was still in high school at the time, it was like a drop in peer support group. And it was made for individuals who were caring for someone with an eating disorder at the time. And I remember going and feeling even worse when I left, to be honest. Not because they weren’t doing a wonderful job, they were, but it was clear that that open ended resource that was advertised was actually made more for parents. And so I was sitting in a room, and there’s a huge circle around me, and everyone there is talking about their child and I could not relate at all. And I felt angry.  I was like, I don’t belong here. Where do I belong? What kind of a role am I even in? And why am I in this? This is so unfair. And I feel ashamed to admit that. That I was angry. I feel like that speaks, like, very negative volumes about the person I am, because here my mom is suffering and I’m angry about it, like, how terrible of a person does that make me? But it’s true. I was really angry. And I think going through those emotions. Which eventually turned into a lot of anxiety and even depression at times.  I look back on it now and I think that it makes a lot of sense that being this unidentified caregiver in a role where you’re so unsupported and you’re so inexperienced and you don’t know what you’re doing. I think it was fair that I was angry at that point and it was just a known trajectory of the way that I was going to heal. And I understand now that it was part of the process and that other people also go through that too. 

I remember at the end of that session when I was feeling so angry and I spoke very little in it. I was approached by the main leader the therapist of the session, and she said, I think you need one on one counseling. I don’t think this group is for you and, I mean, she was right. I do think I needed some kind of individual tailoring to the conversation that I was having. But I also think that speaks to the fact that a lot of our resources, while they’re very, very good they’re not always very diverse. They don’t cater sometimes to all spectrums of individuals coming in with different backgrounds, different family dynamics, different ages, different cultures. And sometimes it can be a little alienating because you’re already probably going there feeling like you’ve tried a couple of things and they haven’t worked. And you go there and you feel like, oh, um, this wasn’t for me and I don’t belong here again. And that just kind of spirals. Yeah, you just start to feel like nothing out there fits. But that’s not true. There are things out there that can support you, and there are people out there that you can relate to. It just takes a couple of tries. And I think that’s what I needed to hear back then it just takes a couple of tries and there are services out there that can support you.

BILL: So at this stage, then, you’ve been at this for a while now. Uh, you’ve been looking after your mother for a while. How would you describe where you are at this point in time, in your carer or caregiving role?

KRISTIE: I definitely think that I’ve gone through a big circle in many ways and when I started to reach out to organizations to actually get involved rather than utilize the resources, which was about a year or two ago at that point, it had been seven years so I felt like I’d had many years to process what had happened, and in many ways, I still am now. But I think I’ve learned to cope with it and to manage it and understand that it’s just a normal part of my everyday life now. And you adjust to things over time, for sure. I found some good resources, too. I found a really good social worker that, uh, understands the family dynamic and she didn’t give up after the first appointment, even though it was very difficult and she is available anytime I need to speak to her and make an appointment, whether that’s for me or whether that’s for my mom, who doesn’t necessarily want to talk much and I’ve also found a lovely committee. Where family members in Vancouver come together and discuss advocacy items of ways that they can help when they’ve had loved ones who have gone through the mental health system in British Columbia or have failed to successfully get through. And even though it’s many different ages, I’m definitely on one side of the spectrum. I still feel like there’s a sense of community there, I don’t feel so alone, and I feel like I can relate to them. When I tell people now, the people that I’m close to, my peers that I’m comfortable with, I do try to use the word, my mom is very sick, and I’m a caregiver for her. And I’ve been doing this since I’ve been in high school. 

I think whether people are aware that caregivers can be on the younger side too, or not, they don’t deny it. I think they’re pretty open minded and willing to hear me out. Uh, my friends are lovely. They’re such a wonderful support system. And it’s something that I didn’t have when I was in high school, because mental illness wasn’t really talked about back then as it is now. And even now, it’s more so like mainstream mental health, like I call it. They talk more about anxiety. They talk a bit more about depression and just quote, unquote mental health. But, you know, there’s still a long ways to go. And so I think these foreign concepts to people, it’s scary when you bring them up like, I’m a young caregiver, my mom has schizophrenia. It’s scary. And you’re always worried about the reaction you’ll get.

BILL: Well, I got to say to you, Kristie, I mean, you are so articulate and a presence about this. It’s a beautiful thing. So I guess part of what I’m asking next is beginning to think about your life going forward, because I know you’re doing some interesting schooling as you move through this process. Can you say a little bit about you’re studying medicine at this point? I understand.

KRISITE: Yeah. So, since I’ve been caring for my mom, I’ve been a student the entire time. After high school, I did my Bachelor’s of Science, and then now I’m in medical school. So, going through my home experience, it’s not deterred me from wanting to do medicine. I think that’s something I’ve always really wanted to do, and what I’ve been through has just made me more passionate about it I do think that at some point, I thought, um, I’m going to go into psychiatry because I have had this experience. I can really resonate with it. It’s so important. It must be a calling for me to do psychiatry. But it’s actually, it’s not at the top of my list of things that I’d like to do, to be really honest. And I made the realization that the things that I’m passionate about are not necessarily the things that are going to make me happy and the things that I find enjoyable just because. I don’t want to do something, because I feel like I owe it to myself or to someone else. I don’t want to do it because I feel guilty and I feel like there’s a big need, and I would be able to help fill that gap in some small way. But I want to do something now because I choose it for myself. 

And there doesn’t have to be this big, long, sad backstory as to why I necessarily chose that career. And this is just me for myself. I know other people make decisions in many different ways, and it’s valid. It’s all based on your personal opinion and your experience and what you want to do from there. But for me, what’s really important in my life going forward is having some delineation between home life, home job, home struggle, and career and my personal life. Because if I don’t make that line for myself, no one else will. And things will start to blur together, and that’s when, for me, it becomes unhealthy, and I can’t compartmentalize what’s going on. I need to have things in my life that I like just because, that’s the way that I like to phrase it.

[MUSIC FADES IN]

BILL: What Kristie talks about here is self care. We’ve talked in previous episodes about self care, especially around strategies to support mental health. So be sure to go back and listen to episode 11 How to Use Writing for Healing and Self Care – and also to episode 14 Creativity as a Form of Self Care – to recognize how you can benefit from the different ways to care for yourself.

[MUSIC CONTINUES]

As Kristie mentioned, resources for young caregivers have changed a lot since she first started seeking them out. Family Caregivers of BC supports young caregivers with their Young Caregiver Program: Powerhouse. If you or someone you know is between the ages of 16 and 25 who provides care to a family member at home, call the Caregiver Support Line at 1-877-520-3267 to see if the Powerhouse program is a good fit.   

[MUSIC DEVELOPS]

As you heard, young caregivers mature very quickly so that they can play a vital caregiver role at home. Kristie, what would you say about your experience to be alerted to, to be cautious about, but to not back away from the challenge?

KRISTIE: I would say no matter what background you come from and no matter what’s going on at home, don’t be afraid to reach out and ask for help. And I know that sounds really cheesy, but the first few resources you encounter might not work for you because, again, a lot of resources that do exist, they’re not necessarily made for the individual experience. But that’s okay, because if you keep trying, there are other things out there that can support you and I don’t want anyone to get in the place where I was, where you feel like there’s nothing out there that can support you and there’s no one out there that you can relate to. There are. It’s just sometimes a little bit difficult. To find, and sometimes it takes more than one try. That’s my biggest takeaway message that I wish I could tell myself when I was younger.

In the beginning, I used to quantify time I used to say, okay, in three months I’m going to be here, and in one year, I’m going to be here. But you can’t predict things, and you also just can’t quantify how long things are going to take you to cope with them and how long your family member is going to take to, I don’t want to say necessarily recover, but learn to manage their condition. And things are, I don’t know if you’re a math person out there, but the way I look at things is very like sinusoidal goes up and it goes down it’s not necessarily always going to go in the direction that you’re looking for. And managing that expectation is really important, because I disappointed myself a lot of the times by expecting a certain outcome by a certain date. and for myself and for my mom. So I think being okay with just learning to manage things as they go. Taking it one day by a day, that’s all that you really need to focus on. You just need to do your best each and every day. That’s it.

[MUSIC DEVELOPS // OUTRO]

VOICE-OVER: Thank you for listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by BILL Israel. Produced and sound edited by Organized Sound Productions. We acknowledge the financial support of the Province of British Columbia and the BC Ministry of Health – Patients as Partners Initiative.

If you like what you’re hearing, discover more episodes, and find more caregiving resources at familycaregiversbc.ca. And if you find these episodes helpful, please share them with your family and friends who may find it enlightening to hear these stories.

Finally, don’t forget to subscribe to our show on your favourite podcast listening app, so you can take us with you wherever you go. Thank you for listening and taking the time to learn and care for yourself with other caregivers, out loud.

[MUSIC ENDS]