Kai

Kai
Age at interview
28
Age at start of caregiving activities
16

Kai is 28 years old and a Native American. He lives with his sister and her husband where he helps to look after their young children. When Kai was 16 years old, he started helping to care for his father at home who had multiple chronic conditions, including heart failure and diabetes. His father’s condition gradually grew worse and Kai became his primary caregiver until his father’s death eight years later. Kai is a strong advocate for youth caregivers.

Kai started helping to provide care for his father who, at 55 years old, could no longer work as a schoolteacher because of his heart disease, diabetes and congestive heart failure. Kai was 16 at the time and initially his role was mostly helping around the house to support his family. A few years later, when Kai had finished high school and his siblings had moved away for university, he decided to find a job nearby to help his mother and father. His father was now seriously ill and required home dialysis, which in turn necessitated a strict regime of care, cleaning, preparing meals and vigilance by Kai and his mother, who were sharing the responsibilities of caregiving. 

As Kai’s father became more seriously ill, there were more frequent trips to the hospital, and challenging times at home in making ends meet. Kai’s mother was between jobs and Kai couldn’t really work while he was so involved in this father’s care. His father developed gangrene on one leg, and then eventually the family were given the decision to either amputate or go off dialysis – both options meant that his father would likely die within a month, but strangely Kai mentioned that this had been his happiest month. His father seemed much more at peace. Kai was happy that his father was able to spend most of his time at home versus a long-term care facility – he moved to a hospice only at the very end of his life, given that Kai and his mother were less comfortable administering pain medication. He wishes that the elite healthcare professionals with whom he interacted could take youth caregivers more seriously and involve them more in discussions about the care of the person. However, one physician stood out as he was very straight-talking about the decisions they faced and also asked directly about how Kai and family were coping.

Kai felt that stepping up to look after his father is partly an expectation within the Native American culture, but also stated that looking after his father was, overall, a conscious positive decision for him. Kai described the isolation of being a young caregiver, having to miss out on social activities and the development of normal friendships; youth caregivers receive no direct support from government. Things changed dramatically for Kai when the opportunity arose to help create a documentary about youth caregivers by the youth themselves; they established their support group following the completion of the film. This group has been an important touchstone for Kai. He credits his experience as a family caregiver with helping him to become more mature and independent, and for bringing his family closer together. He feels that youth caregivers are important role models for others in society.

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Well, like I said, like if they could give us some support in terms of respite care, financial support, academic… advocacy—because I know if I didn’t have my mom, I wouldn’t have a clue what questions to ask at the doctor’s, what I need to know in terms of caregiving. Like, I would not know the first thing. So, I’m assuming that a lot of these youth don’t have advocacy. So, advocacy is a big thing. But I think the most important thing for the kids [is] they really want—and I keep hearing this everywhere I go—is they want the recognition that what they’re doing should be recognized by the government, that this is just as important as what an adult would be doing.

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He was about in his early 50s and my mom and I had to go away for a few days for a conference and I came back. And the situation was getting worse. So we took him to the hospital. Actually, we took him to his doctor’s first and, as good as they could, they gave him a clean bill of health. Well, for his conditions that was as clean as it was going to get. And then, that very night we took him and we found out that he had—we didn’t know about the condition of heart failure at first—but we found out that he had several silent heart attacks. 

Right away it was a frustrating experience because we just saw the doctor and she didn’t see anything wrong with him. Not that she gave him any x-rays, but I would have assumed that she would have caught onto that. And then a few days later I was at school and I got pulled out of the classroom and was told by the nurse that my father had a heart attack. 

Just getting to the hospital was about half an hour away and just nerve racking— “am I going to make it? If he dies is he going to be by himself?” So it was a very nerve racking half an hour ride, and when we got there, it was not fatal; he was going to be good. But, more or less, that was when the youth caregiving experience began.

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So one of them, one of the nurses tightened it, and then when they came the second time, this new nurse was—I thought that she was in a rush. And she ripped, I’m not saying that she ripped it, but she was very quickly, quick to take the bandage off and she ripped skin off. And I remember that was… there were different moments in my experience as a youth-caregiver that were excruciating, like seeing his leg like that. But to hear my dad scream and be in pain, that was—I can still hear it. Like, it’s just the most excruciating thing you have to hear, especially when you’re supposed to be in the best of care with home healthcare. Like, they’re supposed to be doing their job, right? And the thing is, I’ve had this discussion with other former caregivers, how we do a better job. And I’m not saying that… I’m not boasting, but we do a better job, and we don’t have degrees. We don’t have… we’re not being paid to do this; this is what we do on a daily basis. And I’ve done his dressing before, and I don’t want to do it, but I have to do it. And I have to admit, I do a better job than somebody who was actually getting paid to do it.

So have you explored why you think you do a better job, or why is that?

I think—and I notice with a lot of nurses, like I notice that they do do this, but not enough—I think you’ve got to get to know your…and it’s not like you get a chance to really get to know your patient, but just get to know them, their likes and dislikes. I know that dad liked me to warm up his cream a little bit by like rubbing my hands together, because usually they would just pop it up and it would be really cold. So just getting to know their likes or dislikes, and not rushing; that’s the big thing. You can’t rush, especially with this type of injury. You have to just be very patient. […] You have to go with the flow. Like, you just can’t touch him with full strength; you have to just… you’ve got to be very gentle with people like that. So, we were done with that, Like, that was enough for us. We decided that we would just do this on our own.

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Then we would start the process of dialysis, hooking up the machine, getting the solution ready, hooking him up making sure that there’s nothing wrong with the lines and the tubes, and he would usually fall asleep, and then just making sure that everything was good. But the problem was, on top of not being able to see, not being able to hear, if he lied on his tube and clogged it, it would set off an alarm. So my mom and I, during this whole experience, we lost a lot of sleep because we had to make sure that one of us was listening. So our doors were always open, and so, we had to keep an eye out for him. And there was actually an experience where my mom just needed to have a weekend to herself. So, she went and stayed with my sister here at her place. And so basically, there was no sleep that weekend because I’m a very, I can be a very heavy sleeper, so it’s making sure that dad was fine. And then of course the second mom leaves, something happens to his machine—No, it wasn’t his machine—it was he was feeling pain in his chest. So there’s a procedure of assessing it. We gave him some nitroglycerine just for the pain, just to see if that would work and that didn’t work. And then there’s the procedure of—well my procedure is—is it really worth it to call 911, because 911 will take him but then 95% of the time they’ll just ship him off to [city in BC] and I don’t have transportation, and they usually don’t let family members drive with them unless it’s—in that circumstance they actually did let me so that was nice of them.

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So moving forward, probably about the summer of 2007, I was at a point where I needed a job. So, I got a job doing barista—I was a barista—and I also got a job as sales worker, retail. And it was good. It got me out of the house and it allowed me to have a little financial security. And it was very interesting at this conference I just attended how most youth caregivers suffer from presentism. Like you’re present at work, but my mind was never really at work. I remember, like, I got a lot of flack at my retail store because I might have overcharged someone or did something wrong on the computer. And I apologized for it, but I knew I didn’t want to say it, but I knew that was because my mind was probably thinking about what’s going on with dad because he was by himself. My mom was at work and so it was difficult. Like, I enjoyed the fact that I was out, I was doing something productive other than cleaning toilets, but I know that work definitely suffered because of the fact that I was thinking about my dad. And not that it was a bad thing. I think if I would have told my employers, I probably would have gotten a little bit, you know, some slack in that term. But it’s like in the documentary says; it’s definitely a stigma. You don’t want to tell the world that your family isn’t perfect. […] You want them to think that you have a perfect family; there’s nothing wrong.

But it came to the point where work was really suffering, and I was eventually fired. But before that, like at the barista, I had to quit because it was just getting too much. And then I was fired from this job, […] but when you’re looking back on that experience, that was probably the best thing to happen because that was right about the time when we were in the final stages of dad’s life. So at that time, that’s when I became his full care attendant for him. And 3 months prior to that he had twisted his ankle. And being a diabetic, that was going to take months and months and months to heal.

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I think the biggest thing that I got out of it initially was—well in any youth caregiver experience you do feel that you’re isolated and that you’re the only person doing this—but it was very fascinating to me to know that there were several other youth. They were younger than me at that time but they were still doing it, and to realize that there were other people in your own community that are doing caregiving experiences so much like yours was fascinating to me. You just don’t assume that this could happen in your own community.

So about March of 2010, I was approached by [coordinator youth caregivers group] who was heading up a pilot project to raise awareness around youth caregiving in our community of [city in BC]. Initially we got together with 15-16 youth and young adults, former, current, or supporters of youth caregivers, and we wanted to create a way, an effective way, to raise awareness. And the traditional way would be to create a pamphlet, but then I’ve seen so many pamphlets either thrown on the floor or in the garbage, and that would just be a big waste of money.

So, the documentary was the way to go. And what made this documentary so unique was how it really was youth driven. We know what it’s like to be in school and to watch these documentaries, and they’re so overpowered by professionals, and it gets really boring. So we wanted to make it just so youth would be able to find something that speaks to them. And then we were lucky enough to have Dr. Grant Charles come, who has been doing research for the past 5 years about youth caregivers in British Columbia and also in the UK. And he had an abundance of information that pertained to what we were talking about. So, we were very grateful to have him there for that.

But the script, the way we wanted things filmed, everything was done by the youth, and even down to the most minute detail. I think it gave them a sense of confidence and a brush up on their self-esteem just to have this experience, and to have their mark made on something. And so, we had the launch and then we created our support group about a month after that.

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It came to the point where we had this appointment with the doctor and I remember we were in the, like, in an office probably a little bit smaller than this room, with my dad, my mom, myself and the doctor, and they basically gave us the option of amputation. But because of somebody in his condition, it could take years—he estimated maybe like 5 years just to adjust, because of his condition—to adjust to not having a leg with rehab and things like that. And because of his heart condition, he would most likely pass away on the table—because of his heart disease—because of the anesthetic they would have to use. Or go off dialysis and within 4 days he would pass away.

So basically it was a death sentence. There wasn’t really any good news there, but what I loved about this doctor, and this was the only doctor that I remember that didn’t beat around the bush. All the doctors we had sugar-coated everything. It made us feel there was hope, there were other options. But this doctor just said it like it was and I loved that. I was already tired of everything else that was happening in a medical field that—like our doctor saying he had a clean bill of health and then congestive heart failure—so I was already tired of listening to doctors, but to have this guy not only give it like it was, but then he asked, he went and asked us personally “How are you doing?” He just made you feel like you were included in this, like […] not only was this a major affliction for dad, but this was also afflicting us. So I really felt that he made us feel special in that sense, that he was looking after us.

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I think every youth caregiver has their difficult moments with the medical, like the doctors and hospitals. I understand that the home healthcare network is under a lot of stress and I respect that, but I think when you come into somebody’s space there has to be tremendous respect. Especially… and again, it’s really hard to know when you’re coming into a place where there’s a youth caregiver, because youth caregivers, there’s no mark on us […]. We are an invisible minority in the mainstream Canadian society. But when you do come into somebody’s home and you know that there’s going to be youth, like you just treat it as respectfully as possible, and if possible get to know your patient—their likes or dislikes like I just mentioned—like, how they like a procedure done because they’ve already had it done probably several times before you’ve come. So, get to know how they like things to be done.

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The most positive experience of this whole caregiving experience was the fact that I had a really close relationship with my dad, and with my mom. And I felt, with all the sacrifices that they did for us—they sent us away to get a great education, knowing that they could afford it, but money could have been used for other things, but they felt this was their duty as parents to make sure that we get a great education. So, just the sacrifices that they made for all 3 of us kids. It felt good, looking back; it felt good to be able to give back to my dad. And it wasn’t the easiest experience but I’ve learned life is going be full of these experiences and if we just embrace it and realize that we’re all going to go through a caregiving experience; you learn a lot. With this experience, I look back on all of the difficult moments, and each moment was a lesson for me. And I think the last impression I have of my dad, when he made the decision, was you’ve got to enjoy life and you’ve got to enjoy every moment because you never know when you’re going have to make this decision. So, I don’t think I would ever change anything. Everything was supposed to happen for a reason, so I would definitely not change any moment of that whole experience.

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It started about early 2005 when he did his dialysis, and so he was home and he did it at night for about 8 hours, but with that it meant all the supplies that he would have at the hospital were coming to us now. So about 6-8 weeks, there would be about 60-70 boxes of medical supplies and at the time we were living in a 2-storey house. The closets weren’t that big, so we could only fit as much as we could. So a box of solution, of dialysis solution, was about 5-10 lbs each, and he would use about 4-5 boxes of that. So 4-5 boxes were brought up from downstairs every single day and he wasn’t at the point where he was forgetting so I didn’t really need to help him out with different cords hook up to this and buttons and things like that. But both my mom and I were trained for a week, basic training on how to hook him up just in case it came to the point where we needed to help him. More or less, my job was just carting up all of the medical supplies and I would keep an eye on him for his medication just in case, making sure he didn’t double dose which sometimes he would do—not knowingly—and just keeping him motivated, and doing that very subtly because, just trying to imagine what life’s like in his shoes—he’s forced to medically retire, he has nothing really to do around the house when we’re not there— so just trying to like, “You can,” he still had the ability to drive,  “you can go and do that,” and never really telling him “this” is what he needs to do, because I didn’t want to be judgemental, that I still have the opportunity to do things while you don’t.

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It started with the documentary and then we knew that that’s one of the things that needed to come out of this. And it was perfect timing because one of our young men who was caregiving for his mother, she was in the final stages of brain cancer or something to do with cancer in her brain. And him and myself were able to connect because I had just lost my dad about two years ago and he was losing his mom within a few months. And so, we were able to connect by me telling my experience and asking him, like, how are you doing? How are you coping? And so, even after session—like our group would end but we would be on Facebook chatting with one another. And so, we’re very close and I know that, without this supportive group, things probably could have been a lot different for him.

So I’m very grateful to the group for that. But for just even former youthcaregivers, we still come up to these things, to these support groups, because we still have things that we’re lingering with and we have issues with, and it’s great to know that it’s just a place where we come, we have a bite to eat, we enjoy each other’s company, we’re friends. We may be different in age and experience and stories but we know that our common ground is that we have been or still are caregivers. And so there’s no judging […] but it’s just a great place and to know that we’re not being analysed or notes are being taken, that this is essentially just a place for us to rant, to tell our stories, just to be together. And it’s a really great feeling to know that there’s, at least once or twice a week—no sorry, twice a month—that there’s these opportunities to be with these other youth.

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So moving forward, probably about the summer of 2007, I was at a point where I needed a job. So I got a job doing barista—I was a barista—and I also got a job as sales worker, retail. And it was good. It got me out of the house and it allowed me to have a little financial security. And it was very interesting, at this conference I just attended, how most youth caregivers suffer from presentism. Like, you’re present at work, but my mind was never really at work. I remember, like, I got a lot of flack at my retail store because I might have overcharged someone or did something wrong on the computer. And I apologized for it, but I knew I didn’t want to say it, but I knew that was because in my  mind, I was probably thinking about what’s going on with dad because he was by himself. My mom was at work and so it was difficult. Like, I enjoyed the fact that I was out, I was doing something productive other than cleaning toilets, but I know that work definitely suffered because of the fact that I was thinking about my dad. And not that it was a bad thing. I think if I would have told my employers, I probably would have gotten a little bit, you know, some slack in that term. But it’s like the documentary says: it’s definitely a stigma. You don’t want to tell the world that your family isn’t perfect.[…] You want them to think that you have a perfect family, there’s nothing wrong. But it came to the point where work was really suffering, and I was eventually fired.

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We are getting the word out there, but our goal is to challenge legislation and to get the support. And if they can’t afford to give us support, at least give the children the recognition that they want. Because they feel that, a lot of them, the common thing that we get is “We feel that they favour the adults more than the youth,” because they feel that the youth have the energy, they have the—they’re young; they’ve assumed that we have the time to do this. But to juggle between the family, education, social life...

Social life is the big thing. I think that’s one of the things that I do wish that…because of this experience I missed out on a lot. Not much of my high school career, but my early 20s was basically looking after dad. So I missed out on a lot of those experiences.

It’s hard work.  But there’s good times and bad times, but I think there’s more of a sacrifice on the youth caregivers’ part. They’re sacrificing their education, their social life.  And that’s the thing. I think the government needs to know that social life is, I think, the most—well I have to say—the most important part of a kid’s life, because that’s what helps us to learn how to be around people and society, and to work together. And I think if we, if the experience isn’t there, […] it’s really hard to regain that, that sense of social life. Like I said, I’m still struggling to fit in with my friends. And they know what I went through now, but even still, it’s still difficult. So, I think there’s more of a sacrifice for the youth because we don’t have the support from the government. We still feel that they just don’t…they see it as a way of life for us and it’s expected of us because we’re young. But I think it’s more of a sacrifice for youth.

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So in September things were starting to get worse with his leg. It went from a simple quarter-shaped bruise and by the end it had enveloped his whole leg. I’ve never seen anything so fast like that. So on top of keeping the house immaculately clean for his dialysis then, there was the dressing and the cleaning and keeping him occupied and…it came to the point where we had this appointment with the doctor and I remember, like we were in the, like in an office probably like a little bit smaller than this room with my dad, my mom, myself and the doctor, and they basically gave us the option of amputation. But because of somebody in his condition, it could take year—he estimated maybe like five years just to adjust, because of his condition—to adjust to not having a leg with rehab and things like that. And because of his heart condition, he would most likely pass away on the table because of his heart disease, because of the anestethic they would have to use. Or go off dialysis and within four days he would pass away.


So basically it was a death sentence. There wasn’t really any good news there, but what I loved about this doctor, and this was the only doctor that I remember that didn’t beat around the bush. All the doctors we had sugar-coated everything. It made us feel there was hope, there were other options. But this doctor just said it like it was and I loved that. I was already tired of everything else that was happening in a medical field that—like our doctor saying he had a clean bill of health and then congestive heart failure—so I was already tired of listening to doctors, but to have this guy not only give it like it was, but then he asked, he went and asked us personally, “How are you doing?” He just made you feel like you were included in this, like […] not only was this a major affliction for dad, but this was also afflicting us. So, I really felt that he made us feel special in that sense. He was looking after us.


So that was a major adjustment right there. Dad didn’t give an answer about what he wanted, so he spent a few days meditating on that, and talking to friends and family trying to get their input. And then, we had this conversation about the day before he went to hospice, how throughout this whole experience, everything was out of his control. He didn’t have a choice in retiring, he didn’t a choice in the condition that he had, he didn’t have a choice in his driver’s licence being revoked, but he felt at least in this situation he did have control over the choice that was going to have to be made. And he knew that with amputation, it would be a tremendous amount of caregiving in that aspect, so he knew that that would be a burden on us and he didn’t want to do that anymore. He was tired […] For him he was saying like how life just wasn’t really worth living because he was in bed all the time, he was sick, he was in pain. So, he felt that this was his opportunity to take life in his own hands and go with some sense of dignity with both, with all of his limbs. That’s what he wanted; he wanted to leave with all his limbs.


So, as a family we made the decision that he was going to go off dialysis. And so, we had about a month and that was probably the happiest month of my life. We knew what was going to have to happen at the end of the month, but we treated it as this was grace from God. We know how long we have, so we know that we need to appreciate every single micro second of the day. So, I almost, our house did become like grand central station. People were coming and going. Friends were coming and he never turned away anyone. Like, if friends wanted to come and visit with him, he always would welcome them in and they would have their final conversation. And family started coming and people were bringing food, so that was a nice weight off my shoulders, not having to worry about food. And people were very helpful in terms of anything we needed. It was great. But there was still making sure that… Life was still the same; I needed to make sure he was to take his meds, because at this point now he was starting to, his mind was starting to go just ever so slightly. So making sure that he did, like I had to make sure he took his medication. I put it in his hand. Now, I did feel like a parent in this situation, but it had to be done.