Hallucination... what do I do? How should I react?

raquelh1994

I'm my mom's caregiver.  She was diagnosed with ALZ/Dementia in mid-2020 after my Aunt passed away from the same thing.  I was her caregiver too.  Everyone's journey is different and I understand that.  

My aunt was like my second mom but I didn't go through what I'm going through with my mom. in her last stages, my aunt was no longer vocal or mobile. Mom is late 6th stage as has been explained to me.  Her hallucinations and delusions are what I don't know how to cope with.  My aunt used to tell me she saw a little girl by a tree standing there but she didn't do anything ever.  My mom sees a man, a woman, and children.  I've figured out that the woman is me because at times she doesn't recognize me and describes what I was doing but the man and children she can't tell me anything about them.  I thought the man was my husband as we are the only 3 that live in the home.

Mom will ask me to talk to them but of course, I can't see them and am having a hard time complying with the request.  I'm finding myself frustrated.  She is on Seroquel (spell check) to help with anxiety and sleeping.  I was to help with the hallucinations and when she started taking the medication it seemed to get better but now it just seems worse.  I don't know how to respond.  What should I say?  How should I act?  I didn't think I would seem so lost in this process since this is round 2 but really 4 experiences in the family.  I guess because its mom is the reason I'm finding this so much more difficult.  Any advice would be greatly appreciated.  My husband is a huge help yet I can't help to still feel alone.  I do have siblings but am alone.

Stuck in the middle

Hello, Raquel.

I think I would call her doctor and tell them what's happening.  It sounds like she needs a stronger dose of medication or a different med.  They may have to try several things to get the hallucinations under control.

illy25

Hi Raquel,

I'm also caregiver for my grandmother who is in mid-late stage Alzheimer's.  She also tells me she sees little kids running atound, hiding and playing in the house. Sometimes when she mentions other people it's her confusing reality with the television, thinking what's in the television. If the tv isn't on then I find it easiest to go along with it. I'll ask her where are the kids, what are they doing, what do they look like, are they saying anything or I'll joke around and say well if they're going to be here they might as well lend a hand because they're not paying rent.  Tell them they can help clean the house, cook food or something of the sort. I know how mentally draining this is but if its not affecting her negatively, not causing paranoia/anger/pain/sadness, then just play along. 

Also, just so you know, Seroquel is an antipsychotic and is mostly prescribed to bipolar and schizophrenic patients.  It can act as a strong tranquilizer for some.  Why don't you get a second opinion? Maybe take her off this medication, it seems pretty strong to give to an Alzheimers patient.  Seroquel may increase the risk of death in older adults with dementia-related psychosis and is not approved for this use.  I hope this helps, stay strong

BassetHoundAnn

Hello, Raquel. Welcome to the forum!

I play along with my mom when she has hallucinations and delusions. Tonight she was insisting that there was a car outside her window that was the car of an old friend from school, which would have been back in the 1940s. I listen to her patiently, tell her that's interesting, and I will keep a watch for the car or the friend. I think the tact should be whatever won't upset her, whatever will calm her. If she wants you to talk to the people by the tree, promise her you'll do it then divert her attention to another topic. If you disagree with her in any fashion that will only make her upset.

jfkoc

Hard on you and hard to know how to "fix" and truly it may not be "fixable". Bottom line, if the hallucinations are not causing distress I would not over-worry. 

Here is but one article about this online.

https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/hallucinations

KawKaw

My mother with dementia had angry delusions.  She accused another resident of stealing my deceased grandmother's wheelchair.   My grandmother did not ever use a wheelchair.

She spewed hate upon this person whenever she saw them.

She also spewed hate upon someone whom she said had turned my grandmother away from their back porch when my grandmother was starving.

We consulted her neuropsychiatrist, who made some med changes.  That did not help immediately, but eventually did impact her comfort positively.

When my mother spewed hate, I did my best to redirect her.  About the theft of my grandmother's wheelchair, she agreed that the person could use it until my grandmother needed it because my grandmother had been a very generous person.

We reminded her of this agreement often, because it didn't last long.

With the progression of the disease, she moved out of this angry hate phase into calmer waters.

In general, my mother was very angry, violent at times, and unhappy.  It was heartbreaking at all levels because it was rare that I was able to alleviate it.  Those few times are bright spots in our time together.

So... perhaps check about meds and remember that effects can take weeks to manifest.

Possibly engage lightly with your mother about what she sees, and then redirect if possible.

ButterflyWings

Hi Raquel - I am sorry you are struggling with this. You got some good advice that I agree with in terms of hallucinations being part of many PWD's experiences. And just going with the flow of your LOs reality, as long as the hallucinations are not causing her terrible angst or fear.

My DH sees people and things often, and also hears people calling his name and sometimes he talks back to them. It only worried me for a brief time early on, when he was feeling paranoid and threatened by the (nonexistent)burglars or intruders, and was stashing butcher and steak knives under our mattress (!) and baseball bats, hammers, etc behind the door. That couldn't continue safely obviously, as I did not want to wake up dead (you know what I mean) - nor did I want him hurt due to running out in the cold night to clobber someone who wasn't even there. You get my point. 

So, meds were in order and Seroquel has been a life-saver for us, literally. Three years now, and the dosage has periodically increased under his Dr's guidance, but without it I would not be able to care for him at home. And just for perspective, no facility would try to keep him safe without the meds either. Given the choice between making a PWD LO more comfortable by helping with meds to address the emotions and fears that are very real to them...versus withholding that help because of black box warnings, we consider the reality: dementia is fatal and a horrible journey if something else doesn't put him out of his misery before suffering all the way through Stage 7 to the end of the dementia road. On these boards, most caregiving family and friends strongly favor getting them the med relief now - it is a small risk I was totally willing to take. 

Here in Stage 6e, my DH still has daily false beliefs (delusions) and hallucinations (sees and hears things and people that don't exist) - but they are harmless now. No more weaponing up, barricading the door, etc. As long as he doesn't miss a dose of Quetiapine/Seroquel he may see multiples of me, wave at the animal under the chair (not), and talk to his long deceased dad, but I can handle that. You definitely want to consult a good geri-psych or neuropsychiatrist who can help you ensure your DM is not suffering unduly and that she and everyone around her is safe. If his fixations do start to make me nuts some days, I try to enter his reality and make up harmless answers, then distract him as the others said. Good luck to you.

Djuneo

Hi, Raquel, i am 62, my sister is 63. She got diagnosed about a year and a half ago with vascular dementia. Its vary hard to take care of my sister when she has hallucinations thank God they have only been  little critters running along the back of her couch. She says "oh how cute!". I couldnt imagine if they were scary hallucinations, I just dont know how i or my older sister would handle that. I think That, Bassethound Ann gave the best advice and I will try to follow it myself. Best of luck to you. Your doing great.

Olly_Bake

I don’t think any of us know how to respond or act at every hallucination. And then when we do act or respond, we may wonder if it was the right way or response. Sigh! Just to share how I responded today. Most days it is where did the baby go? I can say I don't see the baby. He will go right there on the sofa wrapped in white clothing. Then I'll say maybe their mom came and got them or I think his mom came and got him.

Today there were long white strings hanging from the ceiling. I thought he was exercising his arm at first and asked him from the doorway. He goes no. I'm getting down these strings. So next thought was oh no spider on the loose. Well no spider. He goes on to make the from ceiling down to where he was in a curving motion. Once he had them all, he asked me to throw them in the trash. Here I go playing along. I grabbed his hand and go got them and then make the motion over the trash can.