How to talk with someone having a Parkinson's hallucination?
My LO is in another state in personal care facility. He's clear and lucid at least 75% of the time. It's hard to see his body failing and his mind mostly clear.
Then he gets into these hallucinations and phones me that he needs help right away. He can't articulate what kind of help he needs. He "sees" family members, past and living, who aren't really there and won't speak to him. He calls in distress.
I know not to argue, disagree, or correct him. But he thinks it's 10 in the morning rather than 10 at night and says he's going to call various individuals to come and get him or help him. I don't want to encourage him to start calling people that late.
If I ask if he thinks he's hallucinating he says yes but doesn't know what to do.
I feel helpless and don't know what to say or do to soothe him. I don't want him all medicated as that creates other problems.
Can anyone suggest how I should handle these conversations? I don't want to discuss meds, just how to respond.
Thanks for any suggestions about my end of the conversation.
9 Answers
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She would see a young girl. She told everyone about this child. She seemed to be comforted by her and wasn’t fearful or disturbed in any way.
There were times when she would have night terrors as well. I would have to wake her up because she was screaming out in her sleep.
She also went through a stage of trying to walk out of the front door in the middle of the night.
I know that you stated that you don’t want to discuss meds. I have no idea why you don’t. Meds are the only thing that helped to calm my mother. She was prescribed Seroquel and Ativan and she responded well to them.
As far as speaking to your brother, express your thoughts but know that he isn’t able to control this situation on his own. Parkinson’s disease is a neurological disorder and affects everyone differently. You need to speak to his neurologist about his symptoms in order to help him.
Best wishes to you and your brother.
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 ...
Like you mentioned I didn’t try to correct her, unlike when she gets delirium when we do reorient her, but I’d talk to her about what she was seeing or feeling. I was usually aiming for her to not feel alone in her distress and delaying in a chill conversational way while the physiological flight/fight/freeze hormones subsided.
Like calling people for help and the 10am vs pm thing, I might play it like gosh whatever xyz sounds confusing (something neutral and not leading in case like NeedHelp’s mom, the images weren’t scary). What did he think about it? Oh it was scary? Did he see anything threatening at that moment? Oh there were people in the corner? Would you like me to tell them to go away? Sure, I can do that, but you’ll have to tell me which corner cuz I can’t see so good. Me addressing the corner, People, you probably don’t mean to tire Mom out, but she’d like to rest, thank you for leaving now. Me talking to Mom, what else can I help with? Could we talk a little about what kind of help before we do anything? I’d be happy to talk about it— hey, how about a snack while we talk? I do love a bedtime snack. Oh you thought it was 10am? Gosh that must be confusing. Yeah it’s 10pm. What kind of snack did you want? What were we talking about? Ooh right, getting help, you’re not feeling so scared anymore? That’s awesome, I’m so glad. You’re getting sleepy now? You’re so right, I sure have kept you up late. Ok, night night.
As we went I tried to talk less and less and let them talk more and more. For her, almost inevitably her body would reset and eventually her brain would follow along.
I had a health and safety line that as long as we didn’t cross, it was less stressful on all of us to play it out naturally because she has terrible medication reactions. Even going out at 4am. Rule was everyone dressed, walker for Mom, me or a caregiver along cuz we better be up anyway. I’d do the same type of thing in delaying and asking her how she was feeling physically or emotionally. Redirecting never works in her case, but she’s unusual I think.
Does that help? You can’t fix his brain, but feeling loved and not alone goes along way. I’m so glad you are there for him.
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.)
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....
You are most welcome. Glad the dialogue helped.
My mom has the same problem with neuropsych meds. She did not stop hallucinating until she was completely off all neuropsych meds. Not saying that your brother would have the same, but as you said it took a lot to convince the med team to try. The benefit was astounding. They tried 16 diff meds, which either made things horrendously worse or didn’t work at all.
I taught myself a lot about pharmacokinetics and pharmacodynamics and drug classes and finally found a non-geriatric psychiatrist who works listen to me and evaluate her as a whole person, not just as a barmy old fart. They put her on a different class of anti-antidepressant I recommended, a small booster in a diff class and a blood pressure med I didn’t know about that’s used by the VA as a second-line med for PTSD. Worked a treat. As the current psych says, the other drugs didn’t work because what they treat is not what’s wrong with her brain.
I digress. You might consider either a Facebook portal or an Amazon echo for him as I think I’ve read that they can be set to auto answer if you call him. Or if he needs to have a limited ability to call or email, GrandPad is great and the ability to have people call he or him call out is managed by a family administrator. https://www.grandpad.net/ Their tech support is 1st rate.
Depending on his phone provider, I was able to restrict Mom’s mobile phone during set hours except for previously provided numbers. I found a lot of great tools in the family or parental settings.