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?
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Aurala
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Dad had mild hallucinations at times was never combative, a danger to himself or others. Some were caused by meds and UTIs but there where several that "just happened". Talk to the doctor before he gets released and explain in detail your concerns. If the doctor thinks palliative or hospice care is needed then the staff should be able to get the ball rolling on that. Another option if you are becoming overly stressed is a nursing home. It all comes down to what is best and safest for you husband.
Just an FYI, the VA benefits won't follow him into a nursing home, especially if a non-VA one. The wait times on a VA facility could be extremely long. Dad was on wait list for nearly 2 years and never got a call before he passed away.
Dear Aurala. I am sorry that you are having such a horrid time. It is so frustrating and tiring. If your husband is having so many problems you should ask the hospital doctor to get the Hospice care involved before he comes home. The only other option is to refuse to have him home unless something is put in place, which a friend of mine did. For the last 6 months of muy hisband's life he had regular problems with sundowning and not thinking that he was where he actually was, althouh he never saw anything that was not there. He just thought he was on a train or plane or in hospital etc. and did not know day from night and would ask me to get money out of the ATM in our hall. He also got muddled with the television and thought what he was watching involved him, so I had to be very careful what he watched. He did have some infections but it was not those that were causing the problem, they would make him seize up. Very hard to deal with. I just gave up trying to have any form of normality or food times so that I kept myself as sane as I could be. Good luck and big hug. AliBee x
Trying to get in home hospice involved. Not easy in my area apparently. Had no idea how few there were and no residences except one that is exclusively for cancer Patients. Also, so far, Andrew’s vitals are good.🤷🏻♀️ People who say the diagnosis alone is enough don’t live here from what I am experiencing.
Yes, His neurologist prescribed it for apathy...my husband was on it for four days when he started to become very restless and agitated accompanied by crazy hallucinations....I just stopped it cold turkey and within two days all the symptoms were gone and we knew it was from amantadine....at the moment he is in rehab recovery from a fall after fracturing two vertebrae but not sure if he will recover to his point place prior to the fall....has a UTI in rehab and in a weaken condition with a new symptom of freezing feet which really has limited his walking and transfer abilities ...l will bring him home very soon because his time limit is expiring with insurance coverage .....21 days.... and continue with services at home....he has bouts of confusion with any change in location or loud noises and bright lights but no more hallucinating !!!
He takes rather high doses, as we also combat "behaviours" but when he is having a hallucination he takes an additional 5mg and the "bad dream " goes away in about an hour. I don't think there are any terrible side effects, but for him the behaviours and hallucinations are worse than any side effects I would think. He has been on the zyprexa for over 2 years now.
Wow. The Seroquel isn’t doing it. And it’s now up to close to 200 mg. And he’s sleepy. And He also gets aggressive eventually. That’s the hardest part to see.
I was on seroquel for awhile but my wife hated it. I was so sedated I could barely walk and didn't really wake up until the middle of the afternoon. My wife threw the stuff away, and convinced the Dr. to prescribe something else.
I have had minor hallucinations, but they are not scary, and don't last very long. I don't take anything for it.
I actually went through several drugs but the one that worked well is Trazodone. It is an old generic drug that was originally approved as anti-depressant but is used also for insomnia and anxiety. It has improved my symptoms dramatically, but it doesn't really treat the underlying disease. Cheap and effective.
Maureen was prescribed Amantadine from the start (11 years ago). When they seemed to be causing hallucinations we tried stopping the Amantadine but that definitely made Maureen very depressed and tearful. We restarted Amantadine but she was advised to try Rivastigmine patches to control the hallucinations. She also has Clonmazipam at night to calm down violent dreams.
Sadly over the past few months I had trouble getting her hydrated. After several visits to hospital for IV fluids, a PEG tube was fitted. In the process and postponed operations, the hospital left her without any fluids either by mouth or IV for 3 days!! This was only discovered after I made a formal complaint about her condition. Of course, an incident like that pushed her permanently down the 'progressive' slippery slope. She is now in a hospital bed at home permanently and I don't seem to be able to do much more for her but keep her alive and comfortable.
So sorry. The rehab left my husband with little hydration which I didn’t realize until after the bowel was impacted . Boy can these hospitals make grave mistakes.
I was wondering about the exalon patch! Was it given to her for hallucinations or some other dementia related issue.
The Rivastigmine patches were suggested by the specialist Parkinson's Disease Nurse and prescribe by a psychiatrist specifically to calm the hallucinations. These were mostly mild and harmless. She would insist that she had cooked a cake or was desperate to wash the dishes - who on earth would want to do that? She would also try to get up to dust and clean. Obviously more dangerous to herself but probably a comment on my efforts at house cleaning.
Hubby is on Rivastigmine to help with communication. Before the patch he could barely speak and now he can string a few words together. He didn’t experience any side effects and he’s been on it for one year now. His dosage started at 4.6 mg and after a few months we increased it to 9.5. Fortunately he doesn’t have hallucinations and when he gets angry it’s not directed at me. He gets frustrated when he can’t find the right words or when he’s eating and the fork spills his food to the floor. He will pound the table with his fist when the food misses his mouth. Later on he’ll apologize for the behavior. I have learned not to get upset over the minor incidents. I figure that he needs to vent as much as anybody. I cannot even imagine how difficult this is for him.
It’s been years, but, amantadine caused problems for my husband who was diagnosed with Parkinsonism. Once it was cleared, he was “fine”.
No medication worked for him, he ultimately got a diagnosis of PSP. It was confirmed after he died and brain was studied.
Bowel blockages were addressed with daily use of Miralax.
One hospitalization, they medicated him with some type of psychotropic medication. It caused problems. All was resolved when kind nurses let him relax in a recliner chair at the nurse station.
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