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].”
Taking the time to navigate the system and to make phone calls can be time consuming.
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?
Sometimes caregivers are lucky to run into a “magic” person who helps them get what they need.
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.
Finding your way in the system
Like Drew, several other caregivers expressed the need for a single information point where caregivers can access all sorts of resources and help.
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.”