Mom is 90 and has a great memory but she goes into these episodes of seeing things that aren't there. We have told her doctors and they gave her an anti depressant and anti psycodic but after a few days she was going bonkers and she knew it so she refused to take them. I just don't get where this is coming from. She just had a visit with her doctor this week and he agreed if the meds don't make her feel better then she doesn't have to take them. It's so strange to experience this and I don't really know how to respond. When it happened the first time I would explain to her that there wasn't anyone there but she said it's as clear as I am sitting there which kinda spooked me. But I know it's a medical thing not ghosts. I just wondered if anyone else had this happen?
Her doctors started two new meds at once? In my view (I'm not a doctor ) that would be unwise. How would you know what drug was causing the problem?
Visual hallucinations are a hallmark of Lewy Body Dementia. They occur very early in the disease -- they are often the first symptom noticed. Also, in LBD memory loss is not the primary problem. Usually (but not always) the hallucinations are benign. There is no need to treat the person for them unless they are really bothersome to the person. Going along seemed to work best. One loved one in my support group saw children in his house all the time. It got sticky when he wanted his wife to set places for them at the table. She simply reassured him that the children were taken care of. "Their parents are coming soon to take them to their own dinner. They can watch a nature show on tv for now."
Here is an episode from my husband's early LBD: (3:30 am, in our bedroom)
him: there are bats here
me: baseball bats?
him: no -- the little animals that kind look like mice with wings
me: are they bothering you?
him: no -- they are just on the floor next to the bed
me: how about this? we'll just let them rest tonight, and if they are not gone by morning I'll chase them out with a broom
him: OK. Good night.
Of course, by morning there were no bats to chase out. :)
Another thing that causes hallucinations is a uti, but I assume she has been tested for that.
My husband also saw his deceased brother one day. That was early in the dementia and he lived another 9+ years after that.
Discovered several medications, that I thought were relatively benign can cause these problems especially in elderly. Oxybutinin (used for urinary incontinence) is a big problem and mom's insurance co. required the switch from Detrol LA. Visions started within 1 month. Pepcid (for Acid reflux) can cause problems. Both are now on her allergy list...and other meds have been substituted. Most "visions" were stopped by the change. Any other weird visions definitely seem to correlate with UTI issues. Sit with pharmacist or neurologist and full list of medications and see if any have a problem with this...if so - remove them.
We also have to be careful with pain meds...
She also sees holes in the cieling up and to the left. Sometimes people come walking out of the hole. She sees a big hole in the floor about 5 feet out in front of her. Again, vision degrading.
She has had auditory and visual hallucinations in the past due to mixed up meds. She used to see dead relatives. They'd come "set a spell to visit" and it didn't upset her. I think it was messed up meds plus memories plus brain processing it all wrong.
There was also a squirrel that ran around on her fireplace mantel. He wasn't tame enough to get up on her lap, which she wanted.
I have a colleague whose mother hallucinates taking trips to foreign countries. She will say that she went to Scotland this morning and is glad to be home.
Hey, I hope I get to travel like that when my mind goes!
Is there someone in your culture who can come reassure your dad and interpret these visions for him, so he can be comforted? If these are also his beliefs, then this may help him. Not everybody needs to throw pills at things like Western medicine does.
Is there a ritual you can do in the house, with dad, that will comfort him or send the spirits away for a while? Or invite peaceful spirits in to shield dad?
I'm a dyed in the wool skeptic who can't watch scary movies either, but I do recognize that familiar ritual comforts people whether it's a prayer, last rites, smudging, chanting, or making an altar. Do what will comfort his soul, soothes his mind, and protects his physical body.
Then came the visual hallucinations - little santa clauses dancing on the floor (don't step on them!), birds flying around up by the ceiling (and he would whistle bird calls at them, something he was always good at), hamsters running around inside the ceiling (don't you hear them?), or the always-entertaining food hallucinations - he would mime putting a spoon into his mouth, dipping it back towards his chest and back to his mouth, chewing and swallowing, as though he were eating. He swore he was eating a bowl of ham and beans, and boy was it good!
The only thing that stopped the hallucinations - and only temporarily, for about 24 hours - was dialysis. When he came to the end of his life, and required dialysis on a daily basis, the hallucinations were constant.
I hear that sometimes people near death experience this, but this has been nearly a year now so I tend to think it was the UTIs or antibiotics. When I was standing over her once she said the curtain billowed out from the window and all around me....it gave me the willies because it seemed like something from a scary movie, but I know it didn't happen and was the UTI.
do not necessarily listen to the caregiver because AL is not in the caregivers best interests and if she has been with Mom for a long time she is probably very fond of her. Is there anyone she knows who is in AL that you could take her to visit and maybe have lunch with? Or maybe arrange to drop off magazines for a facility and pre-arrange for the manager to happen to be there when you arrive. Mom already lives in an apartment alone so the change would not be as dramtic for her as for someone leaving the family home. Maybe do a little volunteer work somewhere with mom in tow. She could probably read to someone or write letters for them or help with crafts whatever her talents and interests are. Where there is a will there is a way, she does not have to be forced into anything. Try and make it her choice. her own caregiver could still help her in AL.