The agency that provides me services has an on-call team, that is supposed to call and remind me to take my medications at night.
This is also the team that handles crises, including situations where a person is potentially endangered by not having staff that day. There was awhile this fall when I had a bad migraine (okay I still have the bad migraine), was vomiting a lot (okay, that’s still happening too, although I’ve got meds to stop it before it gets as severe as it was before), and was getting dehydrated (which I’m already at risk for, for a number of reasons). And since dehydration wasn’t listed in my file as a major risk, this was being overlooked in the on-call team’s dealings with me. (At that time, I often could not drink water without physical assistance.)
I repeated to them a number of times, as did my then-roommate (who is disabled herself and could not assist with this), that I really needed to have assistance with water and that dehydration was a major priority. Finally when I had a staff person who got migraines herself and knew how bad they can be (it seems that a lot of the world thinks “Oh just a headache”), she convinced them to put something about dehydration in my file.
Which was all well and good at the time. And it would still be well and good if it were being used in a practical way. But there is something to practicality that seems frequently missing in this field.
Because now I get these calls at 10:30 at night, as I just got one a few minutes ago. And the caller innocently asks me to do something on the order of “Take your meds and drink lots and lots of water.”
Practical problems with this:
1. I can’t drink an entire day’s allowance of water at once and expect to actually be fully hydrated by it.
2. If I drank a full day’s allowance of water, at 10:30 pm, then I would certainly have to get up and pee in the middle of the night, which would throw my sleep schedule off, which affects my health in a number of other ways.
3. If the direction to “drink lots and lots of water” is meant to be remembered longer, this doesn’t work functionally for me. (I similarly used to get calls at 9 or 10 pm saying “Remember to take your medications in an hour.” If I could remember and do things like that on an hourly basis, I probably wouldn’t need the phone call, and would probably need significantly fewer services.)
The way things seem to work in this system, though, is it needs to look on paper like they get what to do. I don’t really blame the random people assigned to call me, because they probably have been told to tell me this. But it amazes me how much of what is done “for” me seems to be designed more to appear as if they are doing something about a problem, rather than to actually solve the problem.
Either that or I am greatly overestimating people’s ability to apply information to real-life situations. I have a friend who can’t stand up at all right now and whose staff routinely put objects higher than she can safely reach. I also know that no apparent efforts were made to plan for taking care of hygiene, pressure sores, or any other physical things when I can’t move, even though these are logical consequences of not moving — until I said something about it of course. So it’s entirely possible that somewhere along the line someone isn’t thinking that the knowledge that I am prone to dehydration should be applied in places when it is logical to apply it, rather than told to me in ways that can’t possibly help me much when I’m about to go to bed.
It is also possible that someone somewhere is confusing the idea of feeling good with doing good things, but I have another post I’m trying to prepare on that topic, and I do want to get to bed.