Drew

Drew
Age at interview
38
Age at start of caregiving activities
5

Drew (38 years) is married and has four children (7 to 13 years). He cares for his mother who lives in a separate part of their family home. Drew works full-time as a businessman with his own company at home. Drew’s mother had a stroke (CVA) when he was five years old. He has been involved in her care since he was five years old, and has increasingly taken over the primary caregiver’s responsibilities from his grandparents. His mother needs 24/7care; this is organized through family care and paid caregivers.

Drew was four years old when his mother had a stroke and was hospitalized. After nine months, her parents decided to bring her home and care for her themselves. So Drew grew up in an environment where family caregiving is just something you did. He would be sent to his mother when she was anxious, as he was one of the only ones that could calm her down. Since then, he has always been actively involved in her care because he wanted to be involved. It progressed from offering respite whenever he could during his university years, to offering weekend and vacation respite for his grandparents, and eventually to becoming the primary caregiver when he married, soon after his grandfather passed away. He moved with his wife into the house where his mother and grandmother lived. One year later, he and his wife decided to start their own family and they moved with his mother to a new home. Now his caregiver role has changed from hands-on caregiving into being more of a back-up since he has arranged 24/7 care support for his mother. 

Drew describes different crisis periods in their family caregiving, such as when his grandfather died, as well as a number of challenges: the lack of healthcare support with his mother’s changing needs; the balancing of family, career and caregiving; and his mother’s incontinence and loss of mobility due to a hip fracture. He feels that caregivers are resilient people; they roll up their sleeves, address each crisis and learn to cope. Drew says that anybody who considers becoming a caregiver ultimately has to have that inner sense of: ‘we can overcome the majority of obstacles that come our way’.

He indicates that he is not a good caregiver if he doesn’t have an adequate balance between caregiving and family life. He is available 24/7 for the care of his mother but also makes sure he doesn’t miss too many family activities or moments with his wife. Sometimes the balance is right; sometimes it tips too much to the other side and then needs readjustment.

One of his sisters has actively chosen not to be involved, and another has chosen to be involved as much as she can; Drew, the youngest, chose to become the primary caregiver. On a yearly basis, his family evaluates the situation and makes decisions about the best option for his mother; until now the choice has always been the family care option, partly because they have not yet found a better solution.

He would like to see some more recognition for family caregivers or support for accessing things such as respite services, especially because caregivers contribute to the public health system in a very material way.

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And I’ll use my family. So as much as I’ve said, one of my siblings is not involved in the care routine at all. That doesn’t mean that that individual can’t be involved in the caregiving situation. So, not involved in the care situation, but definitely can be involved in the caregiving situation; i.e. recognizing that if I have to miss a… if I miss a family dinner, it’s okay. Don’t take it personally; it’s because of what’s going on, or it’s because the power went out, or whatever it may be. And so, providing support that way to the family caregiver, I think, is something that is probably the most valuable advice I could think of to give to the family and friends of that caregiver. So maybe, it’s if someone can ease the load of the family caregiver—they may not be able to deal with the hands-on care delivery—but if someone can… if someone offers for example to carpool my son to his hockey game because I can’t get there on time because my mom’s been up all night and I’ve got to wait until the nurse shows up to cover me, that’s great support, right? Because it means that is one less thing I have to now obsess about missing out or sacrificing that affects another person.

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From a pretty early age of four and a half, I’ve lived and been surrounded in an environment where family caregiving is just something that was always normal. So I guess I started as a caregiver when I was five, and by that I mean the experience of watching family deal with a severe brain injury was something that has always been around me. When I was a young lad, I would be sent into my mother’s room at the time whenever she was getting worked up or anxious. Looking back now, I think I understand why, and I think that’s why I say my caregiving days started at that time, because even though I didn’t know it then, what I was doing –or what the thought was—is that for whatever reason I could calm her down. And so my maternal grandparents would, like I said, send me into her room whenever she was getting worked up or anxious and, and for whatever reason it calmed her down. 

As the older I got and the more we lived with the trials and tribulations of her illness, I was actively involved wherever I could be, because I wanted to be. And even through university, every opportunity I could get to offer respite to my grandparents, I would.  And really, [it] wasn’t until I finished my education or my first whack of education, that I then became ‘weekend respite’, or ‘vacation respite’ for—at the time—my grandparents. As they got progressively older and my mother’s condition changed, they were less able to provide some of the basic ADL support that she needed, whereas I had finished schooling in therapy. So, I was able to step into that role on a more formal basis. I guess when my grandfather passed away, that was […] our acute crisis in our family caregiving set up, because my grandmother couldn’t do it on her own, and my mom’s needs were such that we had to have a better plan in place.

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And so that’s been a great, a great thing. […] There’s probably not a family caregiver out there who wouldn’t say the same thing, that there could always be more funding. And I look at things I guess slightly differently, from the standpoint of saying the financial cost to me, as the caregiver, I choose not to calculate because I don’t want to know—because it’s probably bad. But at the same token, my family has a roof over their head; we’re not destitute because of the sacrifices we make. I work hard.

Could I be further ahead professionally without being a family caregiver? Yes. […] I’ve probably, let’s put it this way: probably for me, it’s probably about a 20% difference in terms of, I think, where I would be at if I was able to fully invest myself into my professional career. But the reality is, if I’m on-call every night and I have a rough night, I chose to be the person who is there to assist. And if that means I need some flexibility with respect to my working career, then so be it.

Again, I think there’s a part of me that says “I am living the legacy of her own vulnerability” in the respect that I’ve never once ever thought to myself that I haven’t taken for granted every day I have—particularly with my kids. […] I would be remiss if I didn’t take that away from this situation that my mother had no warning, had no knowledge, nothing whatsoever over essentially going to bed as the mother of 3 children and spouse of her soul mate, so to speak, to waking up with nothing of that. So for me to wake up and not acknowledge that, and to try to structure my life in a way that means I can do those things, is there a financial cost? Yeah there is a financial cost. No doubt about it. But again, I’m happy with the choices I made. I don’t expect that there should be some you know tree of money, so to speak, that allows me to make all the decisions I want without some consideration for a sacrifice, right?

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And yet when we were up at emergency, it was a ghastly experience because the level of understanding wasn’t there. So the ability of the system, I guess to adapt on an individual basis hasn’t, just hasn’t happened. 

So, for example the first… just to get the x-rays, it was the response of the system, so to speak, to deal with someone in my mom’s condition is very black and white. It’s very… the use of I don’t want to say force, but there’s a certain degree of restraint required, for example with an x-ray. And yet, in 34 years of dealing with my mom we’ve worked around a lot of that using different techniques. And the openness of the system to accept that in that in the example of the x-rays, it took…

My mother has been a smoker for since she was 14 I think. And for her, that’s just a comfort. It’s one of the few comforts she still has. And so, as an example, in the hospital when the traditional or so-called policy of dealing with someone brain-injured didn’t work—because she’s tough as nails—for us, we knew that if she was just holding a cigarette—not lit, nothing like that—that that would bring her a level of calmness that you could do anything. Well lo and behold, we finally convinced them that if they wanted to get the scan done, we were going to have to work together. 

And I think there’s… part of it is the professional and clinical environment that says, “Well, family caregivers, we’re professionals at a hospital. We know what to do.” And it’s a little bit of a discounting going on there that says, “Well, let us handle this.” It didn’t work so well and really all it took in the end was for her to hold a cigarette in her hand, for her a) to have a catheter without flinching, and b) to get an x-ray done.

And so, that wasn’t a positive experience. And I guess ultimately, even the amount of times particular to the acquired brain injury in particular to the needs of the family, I think that’s been a bit of a sore spot for us…is that we feel like as family, we feel like we are we are contributing to the public health system in a very material way, if nothing else.

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In my situation, as far as the alternatives go, one of the things we’re pretty good at doing is recognizing—not only because we’re committees, so we have a fiduciary duty as our mother’s legal guardian to make decisions in her best interest, but also because I don’t want to lose sight of the fact that I’m not perfect—there may still come a time when what we’re able to provide for her isn’t the best thing for her. So, one thing we’re good at is at least considering alternatives on a yearly basis. So, what we do is we take a look around—and this really more often comes from me initially, being fairly or at least trying to be connected with the wider community. So, what’s out there for somebody like my mom? And every year, taking the time as a family to say, “Okay, here is the next best alternative,” and then really looking at it from that point of view, to say, “Well, is this really a better alternative?” And so in our case, 34 years later, there obviously hasn’t been a better alternative.

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When I started to take on more of the responsibility—the juggling act between my own young family and my work commitments on top of the caregiving—we certainly had periods of time where, particularly in the transition, where it was exceedingly difficult because it wasn’t something that, as far as things changing with her needs go, wasn’t something that I felt that was actively supported by the rest of the wider healthcare system.

So, to try to access support is a 2-way street. One, you have to have the want to reach out—the desire to reach out for assistance—and I spent easily the first 10-15 years of watching the situation develop with my grandparents who were very hands-off from the wider system; they didn’t want help. And for them, they felt that was failure. So, they made the decision early on that that they could look after her at home.

Certainly living and learning as far as accessing the system, I think again, it’s two parts: 1) you have to want to reach out and 2) there has to be something to reach out to. And certainly in our case, with an acquired brain injury at the time in the early 70s, there wasn’t an awful lot. And I’d love to be able to say that 40 years later it was a lot different, but it’s still something, particularly with the family caregiving experience, that there really isn’t. There isn’t that one-stop phone call to a GP or to a wider system that understands fully her needs, let alone the needs of us who are trying to do this with as much of family caregiving involvement as possible, right?

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We feel like, as family, we feel like we are contributing to the public health system in a very material way, if nothing else. And yet, that’s not always how we’re received. So, if it’s a little extra, I don’t know, recognition around something like holding a cigarette, or whether it’s a little extra support in terms of accessing respite, accessing support groups, accessing really anybody with practical, hands-on experience, we feel that we should be able to do that because, again, for us, if nothing else, we have, by making a decision to keep her at home, we are materially saving the wider public purse quite significantly. And that, I think, is worthy of a little bit of leeway as far as accessing the assistance when we do need it, because we don’t do it that often. All things considered, that time that she was in the hospital—that would have been 3 years ago—that was the first time she had been to a hospital in 20 years. So we must be doing something right, right?

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I get that a lot, particularly around the fact that I’m a male—and I’m a young male to boot—and that I have sisters. So, when people learn that I [give care to my mother], the next question out of their mouth is, “Well, why aren’t your sisters doing this?” For me, the reality is this: I think it, as far as the choice thing goes, it’s to each their own to some degree. However, the reality is that sisters and I have all experienced the same thing— a fairly traumatic event in the lives of our family—and yet we couldn’t be any more different the three of us. I think there’s an explanation for it, but as far as choosing what we do, one of my sisters has actively chosen not to be involved and one of them has chosen to be involved as much as she can, whereas I have made this, really I would call it a life decision. So, if there was a spectrum, I think the reality is that we’ve intrinsically, for different reasons, each one of us has made the decision on our own to what degree we are going to be involved. So, I think that’s probably, as far as the choice goes, I think it’s first and foremost it’s intrinsic. If none of us had it, if all three of us said nope, we would find a better alternative.

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How do I see the future? Well, I guess as a family caregiver, for me the future is 5 minutes from now. I try not to cast a net too far ahead of me because I’ve learned in 34 years that things can change on a whim, and the idea for us in what we’re doing is maintain my mother’s current functional abilities and her quality of life. I think that the best piece of advice I've ever heard as far as trying to balance the home versus facility environment is, and the possible guilt of being a family caregiver’is that I would never want to wrap myself into such a tight ball about having my mom at home for the rest of her life. So, rather than promise or make a promise to a loved one that I’m going to keep my mom at home forever—and she obviously won’t understand that anyway—but for my own sake, it’s more about looking at the promise that she will always get the best care possible. And if the best care possible is at home, then so be it. But it doesn’t necessarily always mean that. So for me the future is: she will always get the best care possible. I would love to believe that it’s always going to be as part of our family unit. […] The immediate sort of short-term future challenges are going to be my family life—my kids and where they’re are at in their current lives, they demand more and more out of me and my wife. The medium-term future for us—and, I mean, fingers crossed—but I certainly hope my kids to some degree are active participants in the caregiving, and that they come to appreciate the fact that what we’re doing is something you can continue into the future. But does that mean I know exactly what the future looks like? Not really, other than a pretty firm commitment to ensuring that her quality of life is the highest we can possibly make it. Ultimately I know that, whether that’s at home or not, I’m still going to be as a family caregiver. I’m still involved 24 hours/day, 7 days/week; it just may take a different shape so to speak.

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I think there certainly have been times like that. […]We were newly married and my grandfather had passed away, so we had essentially put in separate living quarters for us at the house where my mom was with my grandmother. And that was fine at the time, because we were newlyweds and we were both starting our professional careers anyway and it worked out for everybody. 

I think the first crossroad for us was that we had had our first daughter—and we had another one on the way—we were faced with the reality that the situation, as it was, […] did heavily favour my mother’s situation at a cost to my situation. And I think that there was 2 ways to go in a situation like that; we either diverge and we focus on what’s good for one of us. I think the reality in looking back at my time as a 5-year-old, being able to calm her down, was that there has been a recognition that me being involved with her care was a good thing for her. It was at that point when my young family was growing, that the scale was out of whack and we had to find some equilibrium.  

The equilibrium that we found was by moving. We purchased our first home and we essentially flip-flopped. We went from being in a home where we were in a small portion—the basement suite—to [buying] our first home. We modified the basement suite; my mother was in the basement suite, which really was all she needed as far as space goes. Then, my family was in the rest of the home. That was certainly a time where it required us to equalize and tip the scales I think. 

The other times […] along the way have been my mom’s needs, when it was work—mostly work for me, but certainly with the kids, and I use weekends as an example. For a while, I’d work Monday to Friday, and on my weekends— when the kids were young and they were napping etc., and not doing all the great things they do now—that’s when I was more available to be a caregiver. And so, I could do that easily. Then as that changes and the kids get older, my weekends become a little bit more difficult to juggle. So, it required, again, a shift. In fairness to my mother’s needs that were changing, I couldn’t do both. I couldn’t sort of juggle. That would be another point where it requires a constant acceptance of the fact that it’s pretty hard to separate the needs of both. Unless somebody tells me this, I think my mom is better off for having me in her care picture.  

Yet at the same token, there’s a recognition that I’m no good to her if the rest of my work-life balance isn’t quite in sync. I don’t think it’s a static thing; I think it’s a dynamic process. Now my kids are […] in high school, and this year has been a whirlwind as far as adapting to different schedules [and] activities. Our youngest is now involved on a regular basis with extra-curricular stuff, recreational activities that require me to be involved, which means that now we’ve got to juggle the situation all over again. 

My wife this past year was diagnosed with breast cancer and that’s another fairly significant point in the journey that requires some juggling. […] Having lived my parents’ experience as a young family losing my mom to the brain injury, I know for me the life lesson—if there is one out of this whole thing—[is that] my mom would expect nothing short of me doing everything and anything I had to focus on my wife’s treatment and care, even if it meant that over the past year I’ve been less able to do the one-on-one care. It means we’ve had an uptake, if you like, in paid caregivers and other resources that we’ve brought in to support my mom’s needs, ultimately with the goal of trying to keep her life as familiar and continuous as possible. 

But I think that the great news is that my wife is fine; she’s healthy and we’ve kind of gotten past it. But, it certainly hasn’t been the first time and it’s not going to be the last time [that we will face] that balancing act […] of trying to keep the best interest of my mom and her immediate needs in check with, realistically, what we’re able to do for her and yet also what I need to do for my family and my life commitments. It’s on ongoing process right?

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How do I see the future? Well, I guess as a family caregiver, for me the future is 5 minutes from now. I try not to cast a net too far ahead of me because I’ve learned in 34 years that things can change on a whim, and the idea for us in what we’re doing is maintain my mother’s current functional abilities and her quality of life. I think that the best piece of advice I’ve ever heard as far as trying to balance the home versus facility environment is, and the possible guilt of being a family caregiver, is that I would never want to wrap myself into such a tight ball about having my mom at home for the rest of her life. So, rather than promise or make a promise to a loved one that I’m going to keep my mom at home forever—and she obviously won’t understand that anyway, but for my own sake—it’s more about looking at the promise that she will always get the best care possible. And if the best care possible is at home, then so be it. But it doesn’t necessarily always mean that. So for me, the future is: she will always get the best care possible. I would love to believe that it’s always going to be as part of our family unit. […] The immediate sort of short-term future challenges are going to be my family life—my kids and where they’re are at in their current lives, they demand more and more out of me and my wife. The medium-term future for us—and I mean fingers crossed—but I certainly hope my kids to some degree are active participants in the caregiving, and they come to appreciate the fact that what we’re doing is something you can continue into the future. But does that mean I know exactly what the future looks like? Not really, other than a pretty firm commitment to ensuring that her quality of life is the highest we can possibly make it. Ultimately, I know that—whether that’s at home or not—I’m still going to be as a family caregiver. I’m still involved 24 hours/day, 7 days/week; it just may take a different shape, so to speak.

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So the resilient thing for me is that, I guess, cutting to something like the fight or flight mechanism as far as human nature goes, where we say the easy thing to do—34 years ago for my grandparents and my family faced with a severely brain injured daughter with, at the time, very little chance of clinical recovery—the easy thing would have been, I think, would have been to say “We can’t do this. We’re not professionals. We don’t know what her needs are now. We can’t forecast what her needs are later. She needs to be in a facility environment.”

I think the resilient part of it says instead of flight under the stressful circumstances that were, the resiliency says “We may not be clinical experts in working with someone with a severe brain injury, but we’re also family, and we’re also not the kind of people who easily turn our backs on some difficulty, some level of difficulty.” I think a defining feature of most family caregivers is that ultimately anybody who considers—particularly with a chronic illness—anybody who considers becoming a family caregiver ultimately has to have that sense within that says “We can overcome the majority of obstacles that come our way.” If every time something happened—whether it be a seizure, whether it be combativeness, whether it be the incontinence, whether it be mobility issues, whether it be choking hazards—if every time something came up that threw a curve ball in front of our way, or prevented us from going out for dinner as a family, or prevented us from being spontaneous…if every time something like that happened, our decision was flight, I would say that we wouldn’t have lasted 34 days, let alone 34 years, right. 
And that’s something that, that doesn’t mean that there now aren’t numerous times when getting up in the middle of the night to deal with an incontinence, or a seizure, or something of that nature, or just simply a behavioural issue—boy there’s still plenty of those times that’s it still difficult to do, but again the fact is we still do it right? There’s something internal that says “This is part of normal.” And so, in the same way those of us that have kids, our kids don’t tell us when they are going to be sick, our kids don’t tell us when they are going to have a tantrum, but somehow if—I was just joking about this recently where—if before we had kids, if we ever knew the full story, how many of us would really still have kids? 

I think the same holds true as a family caregiver. If I you know if my family knew the full picture 34 years ago, I don’t know, maybe we won’t have you know signed on for this. But I think the reality is that the unknown for us has never been a barrier. It’s never been such an obstacle that we’ve said “Ooh, we’re never going to be able to get through the unknown of incontinence or hostility.” We’ve always had the opinion as far as being, or the attitude, as far as being resilient that we’ve been through probably a lot worse along the way, and we’ve weathered the proverbial storm. And so, I’d like to think that that’s something that is, like I said, is a defining feature of what makes us, and me, sort of carry on as far as being a family caregiver.

 

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With the incontinence again, it was really more of a trial and error thing for us to be able to cope at home. I could certainly see there were certain moments along the way that it probably would have been a good time to reconsider everything we were doing had we not had that resilience. But we did it. And so now, it’s fast forward to probably the next big crisis, as far as her immediate care goes, or her care needs goes, [which] would have been the hip fracture and the mobility, the loss of mobility.


Because she went being 30 years with a brain injury, but being able to ambulate, down to all of a sudden losing that ability. And in those 30 years of being ambulatory, […] the care was fairly arm’s length. And that was the way that it worked for her. And so, the continuity took a big hit when the mobility, the loss of mobility occurred, because we now had to be more hands-on with her. And that’s not—her comfort zone is just not there with that. So, that was a big point where I think, more than anything, we find ourselves a) on the one hand thinking, “We’ve chosen this and we’ve made a decision to do this for her,” and so there’s that somewhat guilt in thinking that we have we can’t keep doing this…because we made the choice to do this and any other option would be a real break in the continuity for her. Even though, again, the incontinence and the loss of mobility are at certain times along the way, as far as the caregiving journey goes, that would have been a reasonable, I think—most people would think—would be a reasonable time to break things up.


Then ultimately outside of that for myself,[…] again because I’ve been a family caregiver for what I consider most of my life, I’ve always made—whether it’s schooling or whether it’s work—decisions and choices that allow me to continue to be a family caregiver. So again, my transition has been very hands-on in the early years, to now more hands-off day-to-day, and really recognizing that with a young, growing family myself, my mother—I don’t think if she had her say—would want me to sacrifice time with my kids that she didn’t get with her kids, because of her.