Hospitals and facilities


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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