Quote:
Originally Posted by pegleg
Paula et al
I have been there - I thought I had died and gone to hell (being without meds). And you get in such bad shape that you go into "out of it" mode; you can see and hear what's happening, but only your body is actually there (you just have to have been there to understand). But I know this: NO ONE SHOULD HAVE TO EXPERIENCE THIS!
Mike, I doubt you have ever been to this out-of-body experience - it's beyond "not showing the results." You have no control whatsoever, and that is why we MUST be prepared when (not "if," but "when") this occurs again. It's more important than Advanced Directives (formerly called a "Living Will." )
Let's not settle for a checklist filed away in a book or some resource file; let's be frightened into action. Action so clear that there is someone you can contact that will take charge of the situation - a perfectly understood plan prepared in advance - with a back-up safety net.
Who's with me?????
Peggy
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I'm with you, Peg! I'm outraged that what happened to Paula could happen to anyone - but I'm especially frustrated that it happened to Paula - a knowledgeable, longtime Parkinson's advocate. This is why we have built a community - to take action in such a circumstance.
I spoke to Paula at length on Saturday; so glad to hear the humor in her voice, but our conversation was her talking and me responding with a series of gasps followed by "OMG"!! every few seconds. I told her we would do something.
I've also spoken to Bill Bell and Greg and AJ to try to figure out if there is a way to move one or more of the orgs forward to promote an educational plan for health care providers (PWP aren't the only sufferers - diabetes patients in hospitals and nursing facilities also have trouble getting insulin when they need it). Bill likes the UK plan that others have spoken of; he has talked to PDF about it in the past, but it might take a story like Paula's - happening to a person like Paula, who is well known by all of the PD orgs - to get the ball rolling.
It angers me that the only way to get proper care in the hospital is to have an in-person advocate at your side (I have also learned this the hard/sad way this year as my mother is in longterm skilled nursing for Alzheimer's; my dad's daily presence is integral to her care).
The patient has been lost in a system that caters to the bottom line - it's not efficient/too expensive to individualize institutional care. The result is the kind of torture that Paula had to endure. It could be anyone of us.