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 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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