How to talk with someone having a Parkinson's hallucination?

That's an interesting idea. We will discuss. Thank you.

Sometimes I do call. The issue is not enough personnel, as in many places. They don't respond to his call button nor answer the phone immediately when it's late and they are understaffed.
And just for the record, I think that's a pretty universal problem and overall we are pleased with his care. And this is a 4+ star rated place....

Not your question, but I also wanted to know if I could what the triggers were. I analyzed when they happened and what was happening earlier. For Mom, she has a delayed sleep-wake cycle so her hallucinations invariably happened as she was going to sleep or deeply relaxing. Panic attacks, which seemed to be related, happened when she woke from naps, although not in the morning. They also often happened if she had been bored or frustrated earlier in the day, sometimes much, much earlier.

Seeing family happened when she was feeling isolated. The big black person shape and the flying purple smear turned out to be a posterior vitreous detachment in her eye and not a hallucination at all. The psych docs messed that up. Never did figure out the group of people that she sometimes saw and I often had to ask to leave. They seemed less rowdy, more crowdy. I’m not particularly superstitious and not religious this way, but I’m quite sure she had a visitation by an angel while I was with her one night. I dealt with the invisible visitors all differently, just like I did with her friends that I knew.

Generally I implemented strong day-night cues, much like when dealing with delirium. We closed curtains in the evening as soon as we could see our reflection in the windows, removed artwork or patterns that looked like faces that weren’t actual faces or photos, and over-lit the heck out of rooms so no shadows.

As it got closer to bed time (her bedtime, not that weird thing where old people are put to bed at 7pm and everyone is surprised when they’re fractious at 4am), we’d turn off the tv and turn on calming music about an hour before. Then when she was in bed, a smart light was set to go down like a sunset over about 30 min and stay at a fairly dark nightlight level (she has a lifetime fear of the absolute dark).

I also bought a GrandPad and used their curated play lists and their Moods feature. One mood with a loop of night lake sounds and video we made a ritual of turning on at night and off in the morning as a cue when she woke in the middle of the night. I’ve also heard good things about using a dementia clock with day-night indicators, but we didn’t have one.

It wasn’t perfect by any means, but definitely helped reduce the hallucinations. I’m lazy and prefer to prevent problems by manipulating systems than dealing with problems after they occur.

I don’t know why the hallucinations started or why they stopped (but I hope they stay gone). In her case, the psych meds clearly made them worse, but everyone is different so if you haven’t talked to the neurologist you might as Need Help suggested.

For me being in the same city, managing private aids, and having a strong scientific interest in neuropsych and neuroscience gave me way control to run experiments to see what worked. Obviously you can’t do that if you’re LO is in a facility in another state.

If you are his rep, have you talked with facility? I’m good with science and systems, not with people so I can’t help with that conversation, but they might know some things to try that would not negatively impact their routines. Some of our aids were interested because they could use ideas with other clients in facilities, some couldn’t care less, really varied.

(The highlight, however, was one aid early on who was so freaked out by the hallucinations that she had a chaplain out to exorcise the house at midnight while I was in quarantine. She kept having “feelings” in the laundry room. Yeah right, unfamiliar feelings called “turning on the washing machine,” not to mention the mouse who lived in the ductwork. I shake my head now looking back. Life is so much easier when everyone can be chill about other people’s weird brains.)

Thanks for your insights. Unfortunately he has had extreme and very negative responses to anti psychotic drugs like Remeron, Seraquel and Ativan. Neurologists and psychiatrists like to add them, but he reacts violently opposite to the intended purpose.


For instance, stripping naked and parading to other residents rooms, punching people in the face and becoming quite belligerent and using awful language. It turns him into a different person and they just give him more and more until he is almost catatonic, non responsive, and vegetative. It was like an act of Congress to get him off those drugs. The result was a much improved quality of life -- at least 75% of the time. Then there's the hallucinations ...