Access is a two-way street. You have to want to reach out, and there has to be something to reach out to. Drew found that there is no single person or place that can meet your needs fully.
Transcript
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?
More from: Drew
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- When care changes over time – DrewDrew describes two critical points during the course of his mother’s disease when his family had to make significant adjustments.
- Uncovering how and why caregivers care – DrewDrew thinks caregivers need to feel they can overcome most obstacles.
- Trying to find the right balance 2 – DrewWhile working on finding the right balance, Drew’s most important objective is to make sure his mother has the best possible care.
- Trying to find the right balance – DrewDrew and his family have made many changes to keep the right balance over the years.
- The future and caregiving – Drew“The future is 5 minutes from now.” Drew wants to focus on making sure his mother receives the best care possible.
- Support from family and friends – DrewDrew’s siblings all had different reasons to be involved in the care or not.
- Society and caregiving – DrewDrew would like the healthcare system to recognize caregivers’ contributions.
- Navigating the system – DrewAccess is a two-way street. You have to want to reach out, and there has to be something to reach out to. Drew found that there is no single person or place that can meet your needs fully.
- Legal issues – DrewAs a legal guardian for his mother, Drew considers alternatives on a yearly basis to ensure she is receiving the best possible care.
- Hospitals and facilities – DrewHospital staff can make use of the knowledge caregivers have about their loved-ones, as in Drew’s case.