My husband is recently on a feeding tube following a hospital stint brought on by an outside catalyst ( removal of amantadine with movement disorder specialists guidance). The hospital sent him to a rehab once establish infection with MDS’s that he titrating back in Med. Once at rehab speech & movement improved, but SLPkept playing with diet & liquids until he had an impacted bowel ( in retrospect he wasn’t being hydrated as the diet was manipulated. He got discharged from the rebab’s pulmonary wing back to hospital for bowel issue only to immediately be told that he also had his first aspiration pneumonia . In retrospect there had been signs in the rehab of this too.
Finally all resolved, got the peg and we went home where he contacted to improve. The peg turned out to be permanent and he’s npr .
Then he began what I guess is sundowning at a predictable time each afternoon. we made a couple of Er trips suspecting UTIs. Twice he tested positive for first one and then another bacteria ( back to back) . The hallucinations were starting and back to the ER and no more UTI according to UTI analysis. The hallucinations became more frequent and less predictable and in a matter of 3 days he was becoming so agitated that he’d become combative when restrained from acting on his restlessness when getting up would mean a fall. No help from anywhere I called, back to Er and now 10 days in hospital and Seroquel rein in behavior which still surfaces unpredictably. He’s quite sedated. Still very much himself otherwise ( between bouts). Lowering dose of amantadine ( scary since it led to this spiral when he went off).
Hospice ( at home)won’t come on board.
Very worried about coming home w/o having this under control. How many trips to the ER which is an unhealthy place in and of itself. Last trip they gave him halodol which is contraindicated in any Parkinsonism and made him more miserable for a day & a half.
Hired private aids, but if he’s aggressive I’d need two which is impossible.
I’m not sleeping and can’t stop the chatter in my head.
Would like to get him Nuplazid to try but need to find a neurologist to prescribe and champion with insurance since it’s a new & expensive drug w no generic. Making numerous neurology appointments. Going in the dark. It’s not on label for PSP but can work on Parkinson’s hallucinations and did work for someone we know with MSA ( another Parkinsonism). The process, once discharged discharged from the hospital ,will not be fast. Hospitals don’t formulate Nuplazid and don’t facilitate anything. Frustrating. Even his most recent MDS needs an appointment before talking about Nuplazid.
Has anyone experienced the hallucinations and had any relief?
Hallucinations/delusions?
Rehab Facility - Is this the right decision?
ASPIRATION PNEUMONIA
