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tltimme Asked October 2011

What can I do when my mom sees imaginary people in the house?

My 77yr old mom has been mentally declining over the past several years. In the last 6 months it seems to have accelerated. Testing has shown that she has significant shrinkage to the left side of her brain and that she has had numerous mini-strokes. The doctor feels that she is also suffering from some type of dementia. I can handle the forgetfulness, repeated questions and other issues, but it's the people she insists are in the house I can't deal with. We do live together so I am there everyday, at first she was not scared of this people. Now though she says she wants them out and she is somewhat afraid of them. I have asked her if she thinks that they may be a result of her illness but she disagrees. She knows that I can't see them, however, she can't understand why I don't do something about them. Short of having a Shaman come and chase away the people does anyone have any suggestions?

tltimme Apr 2012
Both for you and your mom.

anonymous95897 Apr 2012
well i just heard that mother is in the hospital with a uti. on my way over there. prayers please. :)

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tltimme Apr 2012
I know I hear mom moving around her room at night. But if I don't actually get up and go in to check on her after awhile she will lay back down. Working fulltime it's tiring to be up all night with her and then go to work.

jeannegibbs Apr 2012
UTIs can cause hallucinations and other disturbances even in people who have no dementia.

igloo572 Apr 2012
Yep can't win for losing.

For us, the torch style lamps worked best as the light is pretty up and straight directional so theres's minimal shadows if you have them in a corner with nothing around, and they were tall enough that she couldn't get to them. These were from IKEA under $ 12 too with the switch on the side of pole, which was good as she didn't see it to mess with it. Jeanne - I'd forgotten about the shadow issue......she had a whole thing on the shadows coming in at night back when she was in IL. Her apt was alongside the driveway to the parking carports and even though it was on the 3rd floor, the car lights would track only along her bedroom wall and freak her. DId a long valence on that window and problem solved. You really have to get down to their sightline to "see" how they do.

At her NH now, they come around and turn off the lights, tv's at 9PM and it seems they have the sundowners on one side of her floor.

tltimme Apr 2012
Yeah found that out the hard way also, mom doesn't like the nightlights, but she'll sleep with a low watt lamp on.

jeannegibbs Apr 2012
About night lights and dim lamps, etc. Sometimes this kind of lighting throws shadows that seem strange and can make hallucinations worse. Sigh. Can't win, huh? I think light is a good thing. Just consider if it leaves dark corners or makes strange shadows.

tltimme Apr 2012
Website does make you feel less alone on this journey!

anonymous95897 Apr 2012
ok. will do. i thank everyone for their help. i learned a lot. i love this website.

igloo572 Apr 2012
One thing that worked well for my mom when she was still in IL was to put torch style lamps on timers (not table lamps - these she would go an turn off). I had 3 of them set in corners (1 in bedroom and 2 in the living/dining area). The bedroom one was set to go on 6:30 AM and off 10 AM and then again 6PM to 11:oo PM - so no matter what the weather and sunlight, there would be light in her room so she would know ok it's light i need to be up the day has started. The other 2 were set to go off at 10:45 PM so that gave her a 15 minute closure to her day in her bedroom

About the dizziness, ask her md about having her on a vertigo drug.

One big issue is they try to get up quickly and get dizzy from the change in pressure in doing this. Sometimes if they pump their hands while still in bed or after sitting for long periods of time ( open & close their hands and alternate with clenching/making a fist) this gets their blood going so when they stand they don't get dizzy. Try doing this with her for a week to see if it makes a difference.

anonymous95897 Apr 2012
igloo 572, i will check and see if that kind of doctor is in our area. thank you.

anonymous95897 Apr 2012
tltimme, yes she has the dreams or whatever it is at night and when she gets up, she is very dizzy and afraid. she does have a nightlight. will make sure about the doctor visit.

tltimme Apr 2012
Heemomee, my best advice is sit down and make a list of things to discuss with the doctor. Include odd behavior and if possible a timeline as to when they started. Is your mom worse at night, or just before dawn. Would it help to have nightlight burning or even a low watt bulb in a lamp. Whatever you decide to do, make sure the doctor answers your questions and just doesn't brush it off as her being old. That is what my mom's old doctor did, needless to say we changed doctors quickly.

igloo572 Apr 2012
Hee - You have gotten great advice.

If you can try to get your mom to be seen by a gerontologist. They will be able to better evaluate your mom as who what type of dementia and where she is on the spectrum of stages of each type. Not all dementia;s are alike or treated the same.
If there is a medical school within driving distance, then try to get her an appointment with one of the gerontolgists affiliated with the medical school.

My mom likely has Lewy Body Dementia - she sees small animals and has very elaborate "false beliefs". No UTI's. At the beginning, the hallucinations were of concern to her but now about 5 yrs into it, she just kinda takes it as a matter of fact. She is on Exelon patch and Remeron and for her, they work well and keep her "level". Now it takes like 3 months for them to get into their system and the meds need to be very much on a time schedule but for her it is a good thing.

In a way, your mom is spot-on in that she IS losing her mind. The dementia is causing her brain to shrink and for parts of it to die or go black. Good luck.

anonymous95897 Apr 2012
she hasnt been diagnosed with alzheimers yet so i am not sure she even has this. but i will bring it up with her doctor. she says she is losing her mind. thanks tltimme

tltimme Apr 2012
I have found out the hard way that the UTI's can cause major upheaval to the mind of an alzeheimers person. Mom has has two so far this year, at her next doctors appt. I am going to ask about a daily dose of antibotic. Try as I may I can't get her to drink more water.

anonymous95897 Apr 2012
well i am not sure of her diagnosis. she is 83 and she says she doesnt have very long to live. she wakes up in the morning scared to death. this has been going on for about a year i guess. you think it could be a uti? she has had those off and on. she goes to the doctor soon and i will tell her to ask the doctor to test her for a uti. when i talk to her tomorrow i will tell her that we have a plan in place. thanks for your help.

jeannegibbs Apr 2012
Heemomee, what is your mother's diagnosis? Age? Is she in fact near the end of her life or is that delusional? How long has she been hallucinating people?

I suppose you've read the answers in this thread, and know that a uti is often the culprit. It is very important to have her tested for that.

Perhaps instead of trying to convince Mother that the people aren't real, Sis could work on convincing her that there is a plan in place to keep them out.

anonymous95897 Apr 2012
i have the same problem. my mom just called me from my sisters. she is living with her now. she says she dont have very long to live. when she goes to sleep at night, she sees kids and dogs and they dont say anything to her. she had a man in her bed one night and they scare her to death. i am crying because i dont know what to do for her. she continues to say that she doesnt have much time in this world. i am at my wits end. i would not want to have dreams like that. i would be frantic. i can imagine what its like for her. help!

tltimme Dec 2011
jeannegibbs and all of the others who have posted answers, a big thank you from the bottom of my heart. Mom was tested by a neuropsychologist and we received answers to some of our questions in the beginning of December. She was diagnosed with Alzheimers in the moderate stage. The neuropsychologist also said that there could be some DLB as she has characteristics of that with the hallucinations. It has been a learning experience with a definite learning curve! As I am her major caregiver I see the good and the bad moods, were as my brothers seem to catch all the good mood periods. There are times that I feel like I am living in two different worlds, one the normal work world where I can handle things with logic and the at home alternate universe were everything is somewhat wonky. My oldest brother is a retired police officer, I should have him come and demand that everyone who isn't suppose to be there has to leave...Again thanks to all who have taken time from their busy lives to respond to me. Happy Holidays!

jeannegibbs Dec 2011
Her doctor definitely needs to know about this behavior. Drugs should be evaluated/considered. And this may be a clue about what type of dementia she has. As Dr Nancy says, this is typical of DLB.

Hallucinations can also be caused by infections, in particular uti's. Be sure to rule that possibility out.

Aside from these practical medical considerations, tltimme, I can't understand why you are not doing anything about these people. Don't you happen to know a Shaman? Or an Officer of the Law. Or a friend who owns or would rent an officer of the law uniform? Whatever its cause, this is your mother's reality. If it's not a problem for her, live with it. If it is bothering her, help her change it, in a way she can accept and take comfort in.

I see that this thread started back in Oct. Tltimme, if you are still around, it would be interesting to have an update.

DrNancyHoffman Dec 2011
This sounds like Dementia with Lewy Bodies. This is a type of dementia that is similar in many respects to Parkinsons (tremors, physical slowing, rigidity). However, one of the cardinal signs is well formed visual hallucinations, usually of people or animals. DLB is often misdiagnosed as a late onset psychosis. A correct diagnosis is very important because antipsychotic medications used to treat hallucinations in people with psychotic disorders can actually exacerbate the symptoms of DLB and, in some people, hasten death.

DLB is the 2nd most common form of dementia, after Alzheimers. Other signs include fluctuations in alertness (sleepy some days, alert on others); difficulty with REM (rapid eye movement) sleep (the person tends to act out their dreams); cognitive decline; or delusions.

There is no individual test that can give a definitive diagnosis of DLB. Instead, clinicians arrive at the diagnosis by systematically eliminating other causes of the symptoms.

I'm a geriatric neuropsychologist in Northern California and I specialize in the diagnosis of dementia. Good luck with your mother.

cgfollansbee Nov 2011
tltimme - your are right. In fact, I have let her doctor know about my concerns. I have to get meore assertive here, I think.

michfla317 Nov 2011
My mother had the same problem - hallucinating and scared of people she was seeing that were not there. There was a remarkable change in that situation when we took my mother off Tramadol - a pain killer that we replaced with Tylenol and Ibuprofen. You might want to check your Mom's meds. Could be a bad mix or just something that is causing her more problems than it fixes. Good luck!

tltimme Nov 2011
cqfollansbee, you could report your mom to the DMV anonymously I would think. Or let her doctor know about your concerns and he could report her.

cgfollansbee Nov 2011
I've thought about the animals vs people and I'm with you tltimme. I think it would be easier to "humor" about animals than these "rude, disrespectful", etc., humans my Mom hallucinates.

Yesterday, she told my sister that her (deceased) sister told her she's crazy. lol She must have been telling Aunt Virg about the rude kids.

Who knows, maybe her hallucinations will convince her she needs help. That would be an interesting twist. We living, breathing humans can't seem to get through to her.

I wish I could get Mom to go back to the doctor so he could tell her not to drive! I wish I were convinced he'd really get invested in her care since I can't get her to go to anyone else.

Maybe I should talk to Aunt Virg....... lol

tltimme Nov 2011
Think I could handle animals better than people. She thinks that our dogs tail is an entirely separate entity from the actual dog and that it is evil. Her MRI showed significant shrinkage on the left side and from the texture he noted that he believed she had been having mini-strokes. Unfortunately we have started with new doctors as her old GP wasn't worth a tinkers damn. He just told her not to drive.

igloo572 Nov 2011
Seastar - My mom, mid 90's, has Lewy. Her hallucinations are animals - small, none threatening in the corner ones like cats & rabbits. Last month it was bats.
Looking back there is usually something she saw or heard that triggered what the hallucination is. Like for the bats, they were doing arts & crafts that were about Halloween. The rabbit well probably was linked to their seeing an old Fred Astair movie. As time has gone on she seems to take them in stride as a matter of fact.

For us, that is the key, it is for her fact and not a "false belief". She is in NH as of this year (moved from IL) and on Exelon patch, Remeron (great old school anti anxiety med), Antivert daily. I've done prior posts on our experience with LBD with my mom on this site. LBD is really different than ALZ which is a linear progression of decline. LBD is more random with an "episode", which I think is an effect of a protein breakdown which creates the Lewy Bodies. Jeannie Gibbs, who posts on this site, really knows oodles of solid information on LBD, so check out the very good & detailed posts from her.

For us, the episodes which would be maybe every 6 - 8 months, got closer & closer and she started wandering in the evening. Refused to take her meds, and increased paranoia (people wanted to be her, assume her identity). Started calling the police on robberies and demanding they arrest specific people at IL. Presto and no surprise,we moved her from IL direct to NH with no AL in between.

Has she had a Folstein test and does her doc do a mini-cog test every 90/120 days on her and what does her brain scan look like? If she hasn't had these done find a gerontologist for her to go to to get these baseline tests done. They are most helpful to see what stage of dementia they are on the scale that is based on fact and can be repeated over time to see loss and in which cognitive areas.

tltimme Nov 2011
What is seastar?

tltimme Nov 2011
Nothing yet, we had a very bad weekend with hallucinations and no sleep. The neurologists PA has given us a prescription for the Exelon patch. She suggested we try Melatonin to help her sleep.

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