Uncovering how and why caregivers care


So the resilient thing for me is that, I guess, cutting to something like the fight or flight mechanism as far as human nature goes, where we say the easy thing to do—34 years ago for my grandparents and my family faced with a severely brain injured daughter with, at the time, very little chance of clinical recovery—the easy thing would have been, I think, would have been to say “We can’t do this. We’re not professionals. We don’t know what her needs are now. We can’t forecast what her needs are later. She needs to be in a facility environment.”

I think the resilient part of it says instead of flight under the stressful circumstances that were, the resiliency says “We may not be clinical experts in working with someone with a severe brain injury, but we’re also family, and we’re also not the kind of people who easily turn our backs on some difficulty, some level of difficulty.” I think a defining feature of most family caregivers is that ultimately anybody who considers—particularly with a chronic illness—anybody who considers becoming a family caregiver ultimately has to have that sense within that says “We can overcome the majority of obstacles that come our way.” If every time something happened—whether it be a seizure, whether it be combativeness, whether it be the incontinence, whether it be mobility issues, whether it be choking hazards—if every time something came up that threw a curve ball in front of our way, or prevented us from going out for dinner as a family, or prevented us from being spontaneous…if every time something like that happened, our decision was flight, I would say that we wouldn’t have lasted 34 days, let alone 34 years, right. 
And that’s something that, that doesn’t mean that there now aren’t numerous times when getting up in the middle of the night to deal with an incontinence, or a seizure, or something of that nature, or just simply a behavioural issue—boy there’s still plenty of those times that’s it still difficult to do, but again the fact is we still do it right? There’s something internal that says “This is part of normal.” And so, in the same way those of us that have kids, our kids don’t tell us when they are going to be sick, our kids don’t tell us when they are going to have a tantrum, but somehow if—I was just joking about this recently where—if before we had kids, if we ever knew the full story, how many of us would really still have kids? 

I think the same holds true as a family caregiver. If I you know if my family knew the full picture 34 years ago, I don’t know, maybe we won’t have you know signed on for this. But I think the reality is that the unknown for us has never been a barrier. It’s never been such an obstacle that we’ve said “Ooh, we’re never going to be able to get through the unknown of incontinence or hostility.” We’ve always had the opinion as far as being, or the attitude, as far as being resilient that we’ve been through probably a lot worse along the way, and we’ve weathered the proverbial storm. And so, I’d like to think that that’s something that is, like I said, is a defining feature of what makes us, and me, sort of carry on as far as being a family caregiver.


View profile