Navigating the system

Caregivers often work very hard to get the resources they need for themselves, their family, or their care recipient. They might find themselves looking for the right medical professional, or dealing with hospitals and insurance companies. They might make several phone calls to find the right home care service. Or maybe they are looking for financial support or need information about their legal rights and responsibilities.

Finding what you need can be easy; other times, it is more difficult. In fact, you may not even know where to begin.

On this page, we share caregivers’ experiences with “navigating the system”—that is to say, what it was like for caregivers to get what they needed from the healthcare system and beyond. Did they know where to go and who to call? Did they understand all the steps they needed to take?

If you are looking for existing resources and tools, please visit our Resource section, where you will find a selection of resources that other caregivers have found useful.

In general, the caregivers we interviewed put a lot of effort into navigating system and, at times, found it quite challenging. For example, even Michael and Lillian, who work in healthcare, said this was difficult for them: “We’re two professionals who are supposed to be insiders in that world, and we find it really hard [to navigate].”

Navigating the system

The biggest deal is always you to familiarize yourself with the care available and how to organize it, how to start it, to arrange for home care, to arrange for all these things that is really the basic problem that you are faced with.

It’s a huge amount of stress [being a caregiver]. You have to deal with lots of things that are not there. You have to invent care, you have to organize care, you have to help with some, and you have to deal with a lot of processes and procedures, which don’t fit—they don’t connect. Sometimes [healthcare professionals] talk like a bunch of robots out of a Dollar Store. And [caregivers] have to tie this together somehow, and you have to be able to do that. I can see a lot of people won’t be able to do that. So, it’s going to be disasters. I think there’s going to be a lot of suffering as a result of that. Society is really not ready for this because, in the olden days, you had large families who lived in the same house or close together, or on the same farm.

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Taking the time to navigate the system and to make phone calls can be time consuming.

Navigating the system

I learned this, not through the CLSC, by the [city’s Association des personnes aidantes]. They told me, “How come he doesn’t have two partial baths. He should have two showers and two partial baths, at least in—between showers.” Then I called them, “Oh well, yeah, maybe! We will look up his case and… ” You are always, always, always… It is annoying, it is exhausting!

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Need for more resources

A common problem for caregivers is that resources are not always offered readily by people working in the healthcare system. Caregivers are often left to search for this information on their own, and it can be difficult to know where to begin. Where should I look? Who should I call? What kinds of resources even exist?

Navigating the system

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For outside help or support from the CLSC, I would say you don’t really know what’s out there as far as help. You really have to have connections, or make tons of calls, or think of asking questions to the right people in order to get the services that you might need, and also services you might not even realize you need but are out there for you. I’ve learned a lot in the last few years of those services, and I can even see an improvement in their services in the last 5 years. There’s more out there, but you need to either have a professional who is knowledgeable of the services and [who] will tell you about them so you can investigate and acquire the services, or just go for it and ask and demand and request until you get as much help as you can get from them. We were able to get more help for our mother but not until the primary caregiver—which was me—was way past being able to be a caregiver.

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Sometimes caregivers are lucky to run into a “magic” person who helps them get what they need.

Navigating the system

The dealing with negotiating with the healthcare system, navigating the healthcare system, was always a something going on. Just before my dad died, he was in the hospital and he was in very bad shape—on oxygen and really not breathing well—and the hospital, I guess, was very short of beds and really needed to empty out as many beds as they could, and so, wanted to send him home.

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Navigating the system

Every time I knocked on the door, sometimes I knocked on the wrong door. [If} The person can't help me, she will tell me. As a caregiver, I don't know what to tell you. Personally, as I told you, I had physical problems, like anyone else. We solve our problems. It is more with the depression that I had to navigate more.

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Caregivers used many different approaches to find what they needed—and in one case, this included a possible treatment. Richard’s wife gave her doctor an article about a treatment successfully used in Sweden. Her doctor agreed to give it a try. Meanwhile, Hélène would look up anything she didn’t understand in an online science library, and Donovan reads caregivers’ newsletters, but rarely finds anything very useful. Besides these resources, some caregivers used friends as a source of information.

Navigating the system

I think probably a combination. I think when I have felt the need to receive assistance to get information, I’ve received it out west during acute phases. And I think here, because I’m in my own environment and because I’m well versed in caregiving. I think I haven’t asked for help, except for help or advice amongst my friends who are also professionals in healthcare.

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Finding your way in the system

Navigating the system

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

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Like Drew, several other caregivers expressed the need for a single information point where caregivers can access all sorts of resources and help.

Approach

Over time and with experience, caregivers learned how to approach the problems they were facing. They learned new skills to organize what they needed. Rowdyneko described it this way: “You’ve got to be a total advocate, I’ll tell you, to be a caregiver. I mean, I’m sort of naturally an advocate, I can’t help myself. But you do need to be.”

Navigating the system

If you want your partner to get the best of care, you have to ruffle feathers. At some point in time, don’t be afraid to ruffle and say, “No, I don’t accept this. This is wrong. You’re doing it wrong.”

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Navigating the system

That’s the hard part—when you send someone, you’re trusting another person to look after your husband for you and you’re trusting them. And yet, I’m saying don’t trust them. Be on top of it. You have to know what’s going on.

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