Rowdyneko

audio only
Age at interview
61
Age at start of caregiving activities
58

Rowdyneko (61 years) is married and has two grown children. Rowdyneko is the primary caregiver for her husband at home which she finds challenging. She works as a part-time outreach worker for people with mental health issues. Rowdyneko’s husband was diagnosed with chronic obstructive pulmonary disease (COPD) seven years ago. In the last two years, he has been admitted 21 times to hospital. Rowdyneko is currently on sick leave from work because of the stress and heavy workload associated with her caregiving responsibilities.

Although he had probably had the illness for many years, Rowdyneko’s husband was officially diagnosed with COPD seven years ago. His condition has deteriorated to the point that he is currently in hospital waiting for placement in a long-term care facility. Rowdyneko underlines how lucky she feels that her family has good medical coverage, without which she would not know how to get through this costly process.

The numerous ambulance experiences that Rowdyneko has had in connection with her husband’s hospital admissions have had a big impact on her. Before her husband was last hospitalised, every time she heard an ambulance, she was certain it was going to her house. She still wakes up stressed at night when she hears ambulance sirens.

On occasion, Rowdyneko has felt that the hospital staff decided to release her husband too soon, when he was still ill and fighting an infection. At first she did take him home without objecting, but more often than not he had to return to hospital shortly after his release. Later on, she refused to do this, and now she fights and advocates for her rights and the best possible care for her husband. In spite of the fact that she has had a lot of professional experience with similar cases, Rowdyneko finds it much more difficult to advocate for her husband than for the patients in her work caseload.

Aside from her work with people who suffer from mental health problems, Rowdyneko has disliked activities involving medical and nursing staff since a very young age. And, put simply, she does not like caregiving at all. Rowdyneko feels that medical and hospital staff have unrealistic expectations for caregivers. For instance, she was told by hospital staff that she should learn to do certain basic medical interventions for her husband, and to change her life drastically by moving closer to the hospital. The latter would mean moving away from her social network and her work to help with the medical care for her husband. These demands were impossible for her to put into practice.

Rowdyneko explains that caregiving has not only isolated her, but has also made her feel stressed and tired. In spite of her current sick leave, her situation at home has not improved because she misses the distraction offered by her work. Rowdyneko appreciates how some friends remain in contact by writing or going for walks with her, as she does not always have the energy to give them a call. All in all, caregiving has forced Rowdyneko to give up her longer-term plans and she lives hour to hour without knowing what will happen next.

Rowdyneko’s husband passed away in April 2012, shortly after the interview.

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He’s in a transition unit now. He’s not in acute care, which is somewhat better. I do find—because I found visiting him in hospital in acute rooms I was really grumpy—I just do not do any of this stuff well. I mean honestly, I’m being really honest when I say I do this caregiving kicking and screaming. I mean, I was dragged into this by circumstance. I mean, never ever. I mean, I can remember in high school in my day, pretty much your choices were to be a nurse, a teacher, or a secretary. Those were your 3 options. And I can remember going on the future nurses’ tour because this was one of the choices. Man, I stepped in that hospital and I went “I am never doing this in my life.” I had such a strong reaction to that. And I grew up in a home that was very stoic. You didn’t get sick; and if you got sick, you better be damn—I mean, my brother broke his knee and nobody believed him for about 2 weeks. We thought he was shirking his chores because we lived on a farm. And so, that’s the kind of upbringing I had. So, you don’t get sick, you don’t. You don’t do any of this, you don’t do this stuff. So this is totally—I would not wish it on anybody. Now my friend, I have a friend who is a recovering alcoholic, and she always says to me, “Well, there has to be some lesson in this,” she says.

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Other caregivers, I’d say avoid it like the plague. Oh, it’s probably the worst thing I’ve ever done. It’s just because it’s so much not my personality. I shouldn’t say that; it’s totally discombobulated my life. I think for friends and family though, to stay in contact because sometimes I just don’t have time, or sometimes I am just feeling so overwhelmed by things that I go to ground. Like, I just don’t have the energy to phone someone. I don’t have the energy to reach out to someone, but on the other hand, if someone was to pop over and make me tea, or phone me up and say, “Let’s go for a walk,” I would be probably really happy to do that. But I don’t find people do that. Maybe it’s just the people I hang out with. And that could be because, again, I’ve always been a fiercely independent person and I think maybe some people are afraid to step past that now because they know I’m really independent.

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It's a hard thing, because he wants to keep things sort of as normal as possible. For instance, we've got a truck sitting out there. I would sell the truck. I mean, he's not driving, can't drive, but he has a fit if I suggest selling the truck because that's, because he wants to hang onto that as a possibility. We have an RV sitting over here that's going to deteriorate if it sits there much longer. But again, if I suggest selling it because we're not going to be using it, you know. So, I mean, so far I've just let that stuff go and not pushed it because I guess you have to hang on. It's funny I mean, because the kids and I are, we're both totally at accepting of the situation that I don't think he can—well my son, my youngest son, figures he's going to die in the next couple of months. And so, we're, the kids and I, are very realistic about the future. And probably my husband is the least realistic about the future, but maybe that's normal. But it's sometimes hard to deal with because we're almost at a different place than he is, and wanting to move on with certain things that he's not ready to move on with. And that sometimes causes conflict.

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I mean, an ambulance call costs $80. Again we have had thousands of dollars of ambulance calls in the last 3 years, all of which have been covered by our extended medical. But if we didn’t have extended medical, BC medical doesn’t pay for ambulance calls. We would have been paying for all those. So, I mean, we’ve been, we have been really fortunate that way because if you had to add all that financial pressure on the top of everything else—whew!—that would be a really big one. And now they want, they try and charge you $30/day after when they figure you’re not acute at the hospital. So, anyway… You learn all these things, I tell you. I’ve learnt way more than I ever wanted to know about any of this stuff.

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I’m lucky because I have had some personal resource—resources, well like having extended medical. I mean honestly, if we didn’t have extended medical… My husband is now on palliative pharmacare, which I didn’t even know existed until some doctor in the hospital put him on it. So that’s great because now everything, all his medications, are covered regardless, and some over-the-counter medications—that someone who is considered palliative needs—are covered. So that’s fantastic, but you know a lot of people don’t know about that. I have a friend who’s caregiving for her husband, who’s quite a bit older than her, and she didn’t know anything about that. I told her. I said “Get your doctor on that,” because […] I mean, I didn’t know about it until the doctor did it, and we’ve got money for—through our Extendicare—for equipment and nurses if we need it. […] And family assistance plan, because I have availed myself of stress counsellors fairly frequently to give myself some support, but most people don’t have that.

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I mean, in my view that’s a big stress off. And again, the social worker would sit me down and say, “Well this is what you,” to me, “this is what you have to do; you have to move over here, you have to find a place to live, you have to figure out how to pay for it, you have to look after him 24 hours a day. You can’t bring your dogs. You’ve got to figure out somehow to look after your property while you’re gone.” Yeah right. So who’s going to help me with this? And the bottom line is, if you don’t have someone who will do all that stuff, you don’t get a transplant. So, that pissed me off. The social worker did not like me because, I mean, I challenged her on that. I said, “You want all this done, and how am I supposed to do it? Who is going to care for the caregiver?” I said, “What happens if I crash and burn in the middle of this?” Oh no, no. You can’t do that. Yeah. Just like this whole caregiving scenario. I mean, you can’t crash and burn; there’s no way to pick up the pieces. There is no support for caregivers.

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But, what I tell you. This is the best unpaid work the federal government gets, I’ll tell you. They are saving billions with all these caregivers. And, I mean, there’s no income tax relief for caregivers. I mean, we’ve got the disability tax credit. I mean every disability thing, because I work with people with disability, we’ve got every disability thing possible that my husband qualifies for, but there’s nothing for caregivers. And I think they are going to put in a caregiver tax credit. Well, that means you have to pay taxes. I mean, if your income is low enough that you’re not paying taxes, a tax credit is not going to help you. So, I mean, this is my new thing, bandwagon I’m getting on when I have time, this whole caregiver thing. Because it’s just there’s a total expectation that you’re going to do this job 24/7, but there’s absolutely no help to do it.

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So, this time round they are kind of doing this to me again. “Well, if you can’t look after him at home,” because he was in and out, in and out, in and out, “he’ll have to go somewhere.” I just said, “I am not wearing this. Send him home.” “We’ll send him back in an ambulance in 12 hours.” Because I did not want to be the one to make the decision. How does that work? I mean, how’s my husband going to feel when I’m saying—and how am I going feel—I’m saying I can’t look after him anymore. I’m not wearing that one. So finally, they got to—I guess all the doctors and whoever the specialists, and blablibla—got together and they decided that he could not come home. And I said, “Fine, I will accept that. But you guys, yeah, you’re making the decision. I’m not. I’m not the doctor.” I’m going to assess the guy and say he can’t come home? So, yeah. So that decision was made by the medical team.

Last week when I was—or 2 weeks ago when the decision was finally made that he had to go to long-term care—I mean, I was feeling, “Holy crow!” I was really feeling in some ways I’d let him down because I knew that’s not what he wanted to do. And I said that in an e-mail to his sister-in-law, […] my husband’s sister. And she, I guess the next day, was going to breakfast with them all, which I did not know. And she sent back this lovely e-mail from them all saying how much they appreciated what I’d done for him and how I’d looked after him, and how the kids had, and how we couldn’t possibly have done anymore for him, which made me feel good about that, because I wasn’t sure how they were going to respond to that.

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It’s interesting. Some of it I could do a rant on this one. Often what happens is, well often, over say 20 I’d say in the last three years, two years we’ve had 25 ambulance calls. In the last three years we’ve probably had 35 admissions and ambulance calls. And about a couple of times a year the hospital doesn’t want to keep him; they want me to take him home. And they say to me—they use it as a threat—they say, “Well, if you can’t take care of him at home, he’ll have to go to a facility.” Last year he had C. difficile, last August, very seriously, and he was here and we had an ambulance call took him to the hospital. They wanted me to take him home. I said, “I am not taking him home,” because I said, “I’m going to call an ambulance the next time he goes to the bathroom.” And I work with homeless people. That’s what I do. I said, “I’m not exposing myself and my vulnerable clients to C. difficile; not happening.” So, they kept him and he was so sick he ended up being there for a month. But they got the social workers out, they got the whole gang up on me. And that’s what I was saying to you earlier. I mean, someone who was older than me and had less energy than me, and less knowledge, might have caved in that situation.

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They wanted us to do things like—we never got to this point okay—but when we’re having this discussion about whether I can care for him at home, one of the things they’re wanting is, “Well, he has to go get intravenous from time to time, okay?” So, when we’re having this discussion about whether he can come home, “Well, he’d have to come and have intravenous.” I said, “Okay, so how do we do that?” “Well, you have to drive him to daycare”, 45 minutes! This very sick person. Then he has his intravenous. Then you drive him home, and then you drive him back later in the day because he has to have it twice. That’s not going to work. How’s that going to work? Take a look at this guy. Or then he sometimes has to have blood transfusions because—I’m not sure why—they think he’s bleeding somewhere but they can’t figure it out… well, they can’t do the tests to figure it out. “So, blood transfusions,” I said. “Okay. So how does he get the blood transfusions if he’s not admitted in hospital?” “Oh, you drive him down to daycare in [city in BC] and we give him a blood transfusion for 4-5 hours, depending how many units he needs, and then you take him home.” And I’m like, “Oh yeah, that’s going to work…” So then, one doctor says to me, “Well, maybe you need to move to [city in BC].” I said, “Sure, I’ll get right on it.” And that’s one of the issues of living here.

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They wanted us to do things like—we never got to this point okay—but when we're having this discussion about whether I can care for him at home, one of the things they're wanting is, "Well he has to go get intravenous from time to time, okay?" So when we're having this discussion about whether he can come home, "Well, he'd have to come and have intravenous". I said "Okay, so how do we do that?" "Well, you have to drive him to daycare at [the] hospital." 45 minutes! This very sick person. Then he has his intravenous. Then you drive him home, and then you drive him back later in the day because he has to have it twice. That's not going to work. How's that going to work? Take a look at this guy. Or then he sometimes has to have blood transfusions because—I'm not sure why—they think he's bleeding somewhere but they can't figure it out—well they can't do the tests to figure it out. "So, blood transfusions," I said. "Okay, so how does he get the blood transfusions if he's not admitted in hospital?" "Oh, you drive him down to daycare in [city in BC] and we give him a blood transfusion for 4-5 hours, depending how many units he needs, and then you take him home." And I'm like "Oh yeah, that's going to work…" So then one doctor says to me, "Well, maybe you need to move to [city in BC]." I said "Sure. I'll get right on it." And that's one of the issues of living here.

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You’ve got to be a total advocate, I’ll tell you, to be a caregiver. Mind you, I mean, I’m sort of naturally an advocate. I can’t help myself, but you do need to be. But not everyone is, because I watch some of the especially elderly caregivers and they haven’t a clue what’s going on. Like the other day, I intervened—oh, they love me down there—I intervened [for] this guy next to my husband who was going home.

So they want him to go in [name of company] which is a private ambulance, but they don’t tell him that it’s going to cost him $80 cause he lives up here. And so I say to him while the nurse is telling him this, I say to him while she’s there, “this is going to cost $80,” because she’s not telling him. “Well, this costs $80.”

And so, then there’s an organization called [name organization]—and I don’t know if it’s… I think it’s just on the Island—and they have vans and they drive you for free. They drive people who live in the rural areas into the hospital and back home and to doctors’ and specialists’ appointments, to dialysis, etc., for free. Actually my husband had a card on him because he’s used it when I’ve been working, and we gave this guy the card or gave it to the nurse and I said, “Organize this because he doesn’t have to pay for this.” She wasn’t that amused. But actually, once she phoned [voluntary organization] and found out about it, then she was quite happy because it was another resource she had that she didn’t know about.

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I don’t see a whole lot of information out there that I recognize as someone who’s younger, still working, that kind of thing. It’s just not out there. It’s not, that’s not seen as ‘maybe there’s not that many people in that role’ but there is; I’ve run into people through doing, being a caregiver, I’ve run into a fair number of people, probably in my age group or younger, who are caregiving spouses. So, I mean, but it doesn’t seem to be high on the radar. And any programs I’ve heard of from the federal government seem to be for older caregivers and family caregiving for older relatives—parents. I don’t see anything else out there. There needs to be something about…there needs to be some support for people who work. I mean, I know people that just leave their jobs; they don’t have a choice. I mean, I have a choice because I work for an employer—well, I’m unionized so, I mean, I have some rights and benefits and stuff that other people don’t have […]. So in many ways, I consider myself fortunate because I’ve got these things a lot of other people don’t have. They just have to abandon their jobs. I mean, I work with a lot of people on disability—persons with disabilities under the provincial government—and, I mean, a lot of those people are in that situation because they’ve had health issues and they didn’t have any other choice. And now they live on $901 a month. I mean, I’m very grateful for what we’ve got. […] I would just think it’s really deplorable there’s no support out there for the people.

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I haven’t really figured out how to get around that, because I so dislike the whole caregiving thing. And I think in some ways, my husband hasn’t figured out how to get around that either because he knows that I’m not happy doing this. I mean, I try and do it. I don’t complain. And somebody said to me the other day, “Well, you never complain about this.” And I’m going, “Well, what’s the point? There’s no point in complaining; it’s just what I have to do.” I mean, no choices here. So, not much point in complaining, not going to change anything. But I’m sure my husband would tell you there are times—like, I don’t do it willingly; I do it because I have to, and I’m not really that happy admitting that. I mean, it’s true, but I’d like to be doing it because it’s so much fun, or it brings you closer or…No. I mean, I don’t think that’s true. It’s not true for me anyway. I can’t stand any of that stuff. I mean, I’m really lucky that I have my kids because my oldest son is… Honestly, every day he just surprises the heck out of me. He’s just so completely—and my husband’s like this too actually; I’m so glad he got that gene from my husband—is so completely unselfish. And so, he will go in there, he can go in there and he can cut his hair and trim his beard and stuff. I can’t stand doing that stuff. If I was absolutely pushed against the wall, I would do it, but fortunately he just does it. And he doesn’t mind. He goes, “Well, I’ll just bring my razor in and I’ll do dad’s.” And the other day, he reminded—he wasn’t just reminding me—we were talking about Christmas and some of the issues around Christmas and he said, “Well, you know what? It doesn’t really matter what anyone else thinks. It’s what Dad wants, and what Dad feels about it.” And that’s just completely his attitude, which I find absolutely amazing because I have a hard time. Intellectually, yes, I agree with him. But on the other hand, I go, “Yeah, but what about what I want?” And when you’re a caregiver, that does not factor. It doesn’t matter what you want, not at all. And that’s hard to take sometimes.

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I try and plan to go on a cruise every year, just because I have to. I have to get away. But even that’s hard. I mean I don’t even know. It’ll, that’ll be easier if he’s in long-term care because I will know he’s cared for. The past few years, I have to put patchwork together; my kids have to take time off work or they have to—well one of my sons is a teacher, he can’t take time off work, but my other son can adjust his shifts […] or my husband’s family comes out from Quebec or something. But you put together this patchwork and hope it will work and you leave.

[…] And I am fairly good at, I’ve learned that through work, I am fairly good at compartmentalizing it. Once I leave I can usually leave it mostly. In fact we… I mean, we joke, and this is a very dark joke and I’ll say it and you can edit it out if you think it’s too dark, but my kids we always say—this was the year before last I went to Alaska with a friend for 2 weeks on a cruise and my husband was pretty sick before I left, although he was not in hospital although he went in hospital shortly after I left, which I never knew because nobody told me—and they just said to me, “Mom, if something happens, we’ll put him on ice until you get home. Just go.” What can you do? And it’s true, and as it happened he almost died while I was gone, but they didn’t phone me. I mean in fact, I got an e-mail from my son who was here when they had the ambulance call when he almost died, and he said, “Oh, everything’s fine.”And he said that because his brother told him he couldn’t say anything. So you have to, you have to live things that way and figure out how you’re going to make things work.

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I mean, if I’m brutally honest and I said this to my friend the other day who I can say these things to—and I’m not sure if you want, you’re going to want to put this in your interview—I said “You know, if I’d known 5 years ago what was going happen, I might have walked away from the relationship.” Because it’s, well a) you don’t have a relationship; you have a sick person and someone looking after them. And maybe some other people manage to get around that. I haven’t really figured out how to get around that, because I so dislike the whole care-giving thing. And I think in some ways my husband hasn’t figured out how to get around that either because he knows that I’m not happy doing this. I mean I try and do it; I don’t complain. And somebody said to me the other day “Well you never complain about this,” and I’m going “Well what’s the point, there’s no point in complaining. It’s just what I have to do. I mean, no choices here.” So, not much point in complaining, not going to change anything. But I’m sure my husband would tell you there are times—like I don’t do it willingly; I do it because I have to. And I don’t, I’m not really that happy admitting that. I mean, it’s true but I’d like to be doing it because it’s so much fun, or it brings you closer or…No, I mean, I don’t think that’s true. It’s not true for me anyway.