Today's meeting was about Gary's decline. It was all business, all non-empathetic, and all about cutting back on Gary's tried and true cognitive medication regimen that it took us 2 years to balance. Now that he's in a facility, he's become the victim of Medicare's regulations for "gradual dose reductions". He is in full decline and likely won't outlive the completion of these experiments. Hospice has been my ally in keeping him on these meds so far, for his cognitive comfort and stability. This Nurse Practitioner is now going to mix it all up and play god with Gary's cognition. Gary is on Namenda XR 28mg, and 13.3mg Exelon patches. They are starting with his Namenda XR down to Namenda IR 20mg (10mg 2x/day) for two weeks. That change was going to have to occur anyway, because the manufacturer has his Namenda XR on backorder right now. He will be taken down to 10mg (5mg 2x/day) for two weeks, then completely off for two weeks.
I'm hoping to find a way to leave his Exelon alone. He's already had that dose dropped in the past, and it turns him into a vegetable. We have a potential 6 weeks before the Exelon reduction would have to begin...it buys me time to find a way to convince them to keep him steady and let him pass away comfortably. I also know I've read, and need to find, the clinical studies that show when you drop the Exelon, if you find the reaction to be adverse and you re-start it, most times the patient never returns to their previous level of cognition. Gary isn't strong enough to get through that at this late-stage, and he is SO very sensitive to medication changes!
I feel it is no coincidence that just yesterday, the nurses were having difficulty figuring out his CADD pump to dose him with a boost of Fentanyl, and he clearly stated to me and my girls, "No Experimentation". He has obviously overheard this Nurse Practitioner, the Nurse Manager, Director of Nursing, and potentially his Hospice Nurse, discussing the dose potential dose reductions. He hated having his medications changed.
He's declining because of the dementia! There have been no medication changes except for pain management increases during his entire decline. LEAVE HIM ALONE!
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