Decisions, Decisions, Decisions

Things have been going smoothly for a while so I should not complain or get upset when we hit yet another bump in the road. Gregory has been very alert, engaged, talkative (although mumblish,) happy, whistling, singing, laughing, eating well, generally enjoying himself.

But with this high level of awareness, he has gotten resistive again when he needs to be changed (i.e. new paper pants after a pee and/or poop.) His regular day RCA (Resident Care Associate) has left to pursue a career as a nurse and we wish her luck. But with change comes readjustment and reassignement.

So it is not clear why Gregory has been having a difficult time lately with being changed. Is it the new people helping him? Is it that their approach/demeanor is different than what he is used to? Is it that his "meds" are slowly becoming less effective? Is it that there are three of them helping him because he has been harder to handle? Is it because he hates being treated like a baby who has messed his pants (he still seems to hate having to pee and/or poop on himself?) Is it because he is frightened when he has to be hoisted by machine and moved to bed? Is it because he cannot take directions and therefore is unable to help the RCA's change him. Is it because he is a big boy, weights 180+, is strong when he wants to be, and is dead weight?

Unfortunately Gregory cannot tell us so we are trying to see if we can figure out how to help him be less resistive. First, Manny will join the RCAs in the process again as a calming, reassuring face. For a while Manny stopped assisting in this way. By required procedure he cannot use the machine and cannot be one of the two required people in the room. But he is a calming influence and I am hopeful that will help.

There is the possibility that we will need to tweet the Risperdal a tiny bit. It worked to help him maintain his "calm" when he was previously resistive and if we can do that without diminishing his energy, engagement, focus, etc than so be it. Lieberman nursing staff is always very careful when even mentioning drugs and I trust them in their decisions (although as Power of Health Attorney I have the final word and they are supportive and informative as they include me in the decision making process.)

But what do you do when someone like Gregory, who needs to be cleaned up at least two or three times a day makes that difficult. The RCAs have informed the head nurse that G seems to be more resistive and that they are afraid to take him on permanently (now that the previous helper is gone) because he is so difficult at times that they worry for their own health and hurting their backs.

I cannot blame the RCA's as I know how hard it is to move him around and to get him to do what you want him to do since he does not take directions even when one at a time and when simple and easy (in our minds) to complete.

So I am feeling a little worried, say that I know it will all work out well, but am a little scared anyway, know that Lieberman has Gregory's best interests, but need to make yet another decision on his behalf. I hope it doesn't come down to "To Drug or Not To Drug, That is the Question." But if we have to can we do it carefully, and minimally.

Have I rambled enough? Maybe this will help me get some sleep tonight!