Over the years, I've read many posts where doctors and other medical professionals override a spouse or LO's concern and prescribe or administer a medication that we have insisted is bad for our LO -- often to horrific results.
I do not understand whether I have been fortunate over the years, or have been awesomely overbearing, or came across as a husband-adoring bwitch who would clearly sue their ass if they disregarded my instructions, but I have NEVER had a medical pro even try to override me when I made it clear I would not allow a certain medication to be administered to Jerome.
Of course, I walked into every new doctor appt. and into every ER trip with multiple copies of a printed list of Jerome's meds/dosages, large type stating "This patient has Lewy Body Dementia and is at risk for catastrophic reaction -- including neuroleptic malignant syndrome -- to the following medications: ... "
Then I list specific meds that we know Jerome has had a bad reaction to, followed by the categories of meds we know are not good for LBDers.
At the bottom of the page, in bold, it states "The patient's spouse must be consulted before the introduction of any new medication."
Anyone who asked for a recitation of Jerome's meds was simply handed the printed page and I told them to attach it to his chart.
They often looked skeptical that he could be "allerigc" to all those meds and would often "test" me on what happens if he gets, for example, an antipsychotic med, or in Jerome's case, Seroquel. I always stated matter-of-factly and in as few words as possible, the worst case scenario ... extreme confusion, or NMS symptoms, or accelerated and irreversible dementia symptoms, etc. They back off.
Every doctor has respected my knowledge of LBD and meds (thanks to the education I received wholly through this list and the LBDA website) and since they got my "warnings" in writing, have never pressed to give Jerome a med he had no business taking.
I don't know who has the legal right in a hospital setting to ultimately decide whether your LO is going to be given Haldol, for example. But you have every reason, right and moral obligation to say "NO." And put it in writing advance, and you've increased your power to draw those lines. No one wants to risk a lawsuit.
Again, maybe I've been lucky with our personal physicians and the random ones in hospitals and ERs over the years, but they've all been respectful of my med "rules."
Hope this helps empower some of our fellow caregivers!
