Advice for professionals and society

For the most part, the caregivers we interviewed spoke very highly of the healthcare professionals they interacted with. Still, they had both good and bad experiences. A few had very upsetting experiences that left them with feelings of frustration and anger, and sometimes led them to file a formal complaint. Some felt that particular healthcare professionals had made a wonderful difference in their lives and those of their loved ones. We asked caregivers what advice they would give to healthcare professionals—such as doctors, nurses, managers, and policy makers—based on their experiences. Many of those interviewed suggested that healthcare professionals in general could improve their service by involving the caregiver more and by providing timely information about available resources. Another major piece of advice was to also care for caregivers and make sure that they are well and can continue in their role as caregivers.

Information for caregivers

Caregivers are not always aware that they are actually caregiving and thus do not attend to the consequences in terms of their own healthcare needs.  It isn’t always easy for them to find information and support on their own. Medical professionals may often be in the best position to help the caregiver find the relevant tools and resources.

 

Advice for professionals and society

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Transcript

So I think it should be once someone has a chronic illness or is in need of the caregiver—has a caregiver—I think that not only should the person who is ill get the help and the doctors involved and nurses and social support—the social services—but I think when they realize there’s a caregiver involved, I would hope that sometime, some day, right away, it would be an automatic thing: “Well, these are the services available for the person you’re caring with, but also these are the services available for you that are very important.” Because you always hear that. You always hear, “Oh, you can’t do it alone.” You can’t, and you don’t realize it until either you’re right in it and you don’t know where to turn, or it’s too late. And I’m not saying like I’m over, my life is over. To me, I’m just restarting my life, or building up my life again. But I became very sick as a caregiver and I didn’t get that support that all caregivers should get. Never mind like getting some kind of financial help, just the recognition and everyone says it.

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There were simple and practical suggestions about providing information to caregivers, such as placing posters for caregivers in physicians’ offices, having a list of support organizations available for caregivers, but also to take time to help caregivers navigate the medical system or direct them to support groups for caregivers.

Advice for professionals and society (2)

Generally I’ve had respect from the doctors that I deal with, but I think I earn it. With all dad’s hospital visits, I would be there in emergency, sitting beside his bed with my recipe cards of every medication he took, every visit he went to the hospital, every diagnosis he had. I made myself available as his caregiver and made doctors’ jobs easier.

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Richard feels that when one is sick, two need help. Richard’s physician recognized that he, as a caregiver, needed support and care as well. Similarly, Shayna explains that for every ill person, there is a family member who’s drowning. Ideally, caregivers should be supported too.

Advice for professionals and society

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Transcript

Oh there’s many ways I think they can improve service. Like these agencies that provide people to come into the home and help, if they’d stop trying to pull the hours away and try to make people feel like they don’t deserve those hours. Like that’s really wrong. I mean, he has a horrible life. I mean, for somebody to come in and help him in the morning for three quarters of an hour, that’s a big deal that they want to even take that away from him? Like assess people properly, try and understand their needs and give them the proper hours they need or help they need, and not try to pull it away from them all the time. Because now, like, he worries me sometimes because I’m afraid one day he’ll agree to give up his hours, right. And he’s getting worse not better. He’s going to need more care, right. And that’s the other thing. There’s a number of things I’m worried about that way. If he gets a lot worse, what do I do then? I don’t know. I don’t know if I could get him into a home. There are line-ups now to get into homecare. Like what do you do? And I don’t even know what’s available there. I don’t even know who you ask about that kind of stuff. I mean, considering I’ve been in this for 25 years, nobody’s come forward with a lot of information or help or anything like that.

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Others suggested that health care professionals should provide moral support for caregivers as well and be pro-active with assistance.

Advice for professionals and society

I think it’s just that thing, I think which is probably relatively common, is that I think anyone with a disability—well any of us, in general have really unique needs when it comes to our healthcare, right. And Luke in particular has very unique needs because he’s a pioneer.

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Medical approach

Several caregivers felt it was important that medical professionals realize what affect their attitude or approach can have on the people receiving care. Anna’s husband was told continuously in the rehabilitation centre that she would likely leave him now that he was sick, and she found it horrible that people would say this.

 

Advice for professionals and society

And there’s nonsense of reassessing and assessing and assessing, that should be done with. It should be one assessment and that’s it. And somebody should follow that, and then they can see the difference. See, if somebody drops somebody on you, you don’t know how she was before and after because you never seen her before. And that’s why they fouled up in the hospital, because an old bitty in a wheelchair was rolled in there. “Well yeah, she’s very old and she doesn’t talk much English.” Well, most of them, you don’t speak English, right? […]

But when my mother-in-law got into the hospital for a stroke, we could see the difference of course, right? But they can’t. So, they didn’t catch on that fast, and it was a light stroke so you don’t see it. And, if a single person was a case manager there, they could have seen the difference from now, before, and after, and she could say, “Okay, something is happening, and something needs to happen.” And that person should be able to direct the care and make it happen. And that more or less happened with my mom in Holland, and I thought it was actually really… that was actually quite smart how that went there.

Well, it would take off a ton of our stress. Now we were able to deal with it, but I’m sure a lot of people won’t be able to look after this like we did, right. And well, good luck them. If you sit in a wheelchair, good luck to you. You are going to suffer.

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Advice for professionals and society

audioclip
Transcript

Oh there’s many ways I think they can improve service. Like these agencies that provide people to come into the home and help, if they’d stop trying to pull the hours away and try to make people feel like they don’t deserve those hours. Like that’s really wrong. I mean, he has a horrible life. I mean, for somebody to come in and help him in the morning for three quarters of an hour, that’s a big deal that they want to even take that away from him? Like assess people properly, try and understand their needs and give them the proper hours they need or help they need, and not try to pull it away from them all the time. Because now, like, he worries me sometimes because I’m afraid one day he’ll agree to give up his hours, right. And he’s getting worse not better. He’s going to need more care, right. And that’s the other thing. There’s a number of things I’m worried about that way. If he gets a lot worse, what do I do then? I don’t know. I don’t know if I could get him into a home. There are line-ups now to get into homecare. Like what do you do? And I don’t even know what’s available there. I don’t even know who you ask about that kind of stuff. I mean, considering I’ve been in this for 25 years, nobody’s come forward with a lot of information or help or anything like that.

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Many caregivers suggested that healthcare professionals should remember that patients are still people. Val suggests that homecare attendants should treat patients more like family members. Other suggestions for professionals were to listen carefully to what the patient and caregiver have to say, to be honest, and practice empathy. And as Madhu and Shayna explain, the approach to individual situations should not be ‘one size fits all’; different people and families each have their own special needs. Factors such as people’s religious and cultural backgrounds may bring different needs and expectations into discussions about care and treatment.

You can read more about caregivers’ experiences with the healthcare care system in the Resources section.

Societal recognition

Several caregivers stressed the importance of broader recognition for caregiving within our society. They would also like to see more policies in place to support caregivers in their tasks.

Advice for professionals and society

Mr. Smith: Yeah, I think it’s extremely important that this whole issue of caregiving is put more into the publicity—on TV, on the radio, whatever kind of programs. Make movies about it. Doesn’t matter what. People need to be aware that this can happen to you. This whole caregiving business, it was a complete surprise to me really. I’d never thought about getting stuck in this kind of stuff. I mean you never think of it.

Mrs. Smith: Like getting old, you never prepare for it either.

Mr. Smith: You’re not prepared.

Mrs. Smith: What happens when you age, that’s another element which nobody’s ever prepared for. Especially this baby boomer generation is never prepared for getting old.

Mr. Smith: Yeah, you see the commercials on the insurance companies, all the people in their little shirt or in the shorts. Old fogies in their shorts, on the beach and all this stuff. Happy after 11. There are reverse mortgages; you can live happy. No, you need to do caregiving. The chances are much greater that you do that. So, we’re living a bit of a lie as far as that goes. So, that’s why I think it’s extremely important that this is be put very more in the open. The plight of the caregiver should really be published really where ever we can, so people learn about this stuff; this happens. So people can prepare. And I think somehow it should be taught somewhere… somewhere, I don’t know where you can teach this. Nowadays, school has to do everything for teaching, but maybe it has to be… somewhere it has to be pushed into people that this is an issue. I don’t know what you can do about that. At least if you start putting it on the radio, maybe make a nice couple of good movies of it, and TV programs for it, maybe it starts, right? And then of course, when we come along then, well, either it started or it didn’t.

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Hélène suggested that caregiving be included in educational programs for children so they are more aware and can learn basic caregiving skills.

 

Advice for professionals and society

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.

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Advice for professionals and society (2)

Michael:  So you asked the question “What would you want to say to policymakers?” I guess another thing that I find really maddening is that, as an adult now, Oliver receives around about $930 a month for disability. That’s for food, shelter, clothing, entertainment and all of his other.

Lillian:     Accommodation.

Michael:  Well, I said shelter, but…

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Advice for professionals and society 2

Yeah, the financing of support, and being able to have outside caregivers in the home when they’re needed. And everyone needs such a different level of support, or wants such a different level of support, but there should be some flexibility in that. And some choice around whether caregivers are working and doing the majority of the care or not.

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Review date
2019-09

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