Reliance on others, it is something I can’t avoid. It can make it very hard to be my own man – like at times I have to make important and personal decisions in alignment with staffing conditions, even to consider a staff members own preferences and abilities – and then there’s all the personal care stuff on top of this too. And with these dreams and desires of moving into my own apartment (which is something I’ve been working toward and planning a lot lately), well I’m now realising more than ever how central staffing is to my success.
I’ve actually been getting a staff team together for the last few months (for this move), and to give you an idea of the fragility here, in just the last forty eight hours days I’ve had staff cancel three of these shifts and on pretty short notice. In fact, if I was in my apartment today, I’d have no staff from 7am to 11pm. I’d be screwed. It’s just lucky I’m still living where I am, so at least I’m safe (haha, with no frills).
Not saying this to sound nasty, it’s just reality – but my life does come second (or maybe even lower) to whatever is going on in a staff member’s life. For instance, if their child has the sniffles (and subsequently they take the day off) I can end up being left pretty high and dry. In some cases, I can even end up in a dangerous pickle. But it’s cool, I’ve pretty much accepted this now, I know my place. But I mean, it is also understandable, family (or other personal matters) do come before a “job.”
But moving forward, with moving into my own apartment, this really scares me. I’m just so reliant. And as confronting as it is to say, from now on it’s like having someone to look after me will be my highest daily priority. As in, when I do move to the apartment, a lot of the staffing and rostering will fall on my shoulders (even organising trainings and holding recruitment interviews). Yet, this is how I want it, I need the control in these areas so I can avoid working with total douchebags. It’s just not safe.
Anyhow, the more I think about this solo move, the crazier it seems. You know, this might even be the bravest thing I’ve ever done (or the dumbest?). Like for when I’ve seen people (with my level of disability) do this successfully in the past, they at least have family close by or maybe a part-time live-in partner. Or, in desperate times, that somebody who can always be there to pick up some “medical” slack.
Contingency plans and the old plan b’s, this is something I’ve been thinking about heaps lately. Like in the case where people cancel shifts (whether it be on short notice or not), well what the bloody hell do I do? I mean, my care is very specific and I have high needs, so I can’t really get just any Tom, Dick or Harry. Actually, one option I’m really liking, there’s this on call in-home ICU nursing service that I’m definitely going to sign up for.
But to point out the obvious here, I think there’s going to be way more instances where I’m going to be having complete strangers looking after me (and doing the most intimate of tasks). And I already know, because of a lack of familiarity, this can get quite scary (medically). No matter what qualifications somebody has, you just can’t teach common sense and logic.
Still, by choice, knowingly this is the world that I’ll be entering – more reliance on a smaller pool of staff, their abilities and their reliability. Which, honestly, this is far from ideal. But if there was another choice or another way, this would be to keep living in the institution where I currently am (or something similar) and to keep having my soul destroyed. Seriously, living in a “nursing home” for fifteen odd years now, there really does have to be more to life. This is shit.
So, in a way, life has pushed me into this corner whereby I’m being forced to play out this gamble (which is to put even more faith in people being there for me). Far out, it is such a weird predicament to be in – and one that is rather unfair as well. But whadya do? You’ve gotta have a crack don’t you… and just hope that the universe will catch you?? Fingers crossed.
Hello Mark You have been quite busy posting recently and I hope it is a sign that you are feeling well.I live in the country and will be in Melbourne this Friday and would like to meet you if possible.I have been following your posts for awhile, the most recent about your family’s migration to Australia was fascinating. Should it be too short notice, some time before Christmas would be great also. Keep wellKalli Koulouris
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Your strength and resilience is astounding Mark. I wish you a happy and problem free life living in your own apartment. X