Hospital staff can make use of the knowledge caregivers have about their loved-ones, as in Drew’s case.
Transcript
And yet when we were up at emergency, it was a ghastly experience because the level of understanding wasn’t there. So the ability of the system, I guess to adapt on an individual basis hasn’t, just hasn’t happened.
So, for example the first… just to get the x-rays, it was the response of the system, so to speak, to deal with someone in my mom’s condition is very black and white. It’s very… the use of I don’t want to say force, but there’s a certain degree of restraint required, for example with an x-ray. And yet, in 34 years of dealing with my mom we’ve worked around a lot of that using different techniques. And the openness of the system to accept that in that in the example of the x-rays, it took…
My mother has been a smoker for since she was 14 I think. And for her, that’s just a comfort. It’s one of the few comforts she still has. And so, as an example, in the hospital when the traditional or so-called policy of dealing with someone brain-injured didn’t work—because she’s tough as nails—for us, we knew that if she was just holding a cigarette—not lit, nothing like that—that that would bring her a level of calmness that you could do anything. Well lo and behold, we finally convinced them that if they wanted to get the scan done, we were going to have to work together.
And I think there’s… part of it is the professional and clinical environment that says, “Well, family caregivers, we’re professionals at a hospital. We know what to do.” And it’s a little bit of a discounting going on there that says, “Well, let us handle this.” It didn’t work so well and really all it took in the end was for her to hold a cigarette in her hand, for her a) to have a catheter without flinching, and b) to get an x-ray done.
And so, that wasn’t a positive experience. And I guess ultimately, even the amount of times particular to the acquired brain injury in particular to the needs of the family, I think that’s been a bit of a sore spot for us…is that we feel like as family, we feel like we are we are contributing to the public health system in a very material way, if nothing else.
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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.