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

Has her doctor suggested anything for your mom's hallucinations, Seastar?

Hi, I care for my 85 year old Momma. She is full time with me in my home. Mom was diagnosed with Lewy Body Dementia about 3 years ago. I had never heard of it, but the doctor explained it this way: This dementia looks like Alzheimer's, with memory issues and has an added layer of Parkinson's symptoms - hallucinations in particular. Eventually, Mom will have the mobility issues that come with parkinson's as well.

Ok, so her hallucinations: Mom knows me, and says my name; Arlene. Then she asks where the little kids are. She's been seeing the little kids since almost the beginning. She thinks that 'Arlene' and my brother 'Byron' are in kindergarten. So she has stepped to another time in her life. Rather than argue with her or correct her all the time, we just have small kids. So I tell her that the kids are at school a lot and 'after school activities' or out with Dad. After school activities have lasted until 9pm sometimes! If she asks if they are in bed, yep. Are they outside? yep.
Go with the flow.

However, this is a bit of a double sword. if your loved one is alone, and sometimes Mom is - I leave a note. I am at work, the kids are at school. Seeing people in your home when you aren't there can cause other dementia behaviors: wandering in particular. Momma may think she needs to go find her kids. Or your parent may think she needs to get away from the people in your home. This is where the behavior can be dangerous, so consider the ramifications of what you say. My neighborhood is all aware of Mom's condition.

Lastly, Mom's dementia acts like what 2d6 says: sometimes there are periods of time, when she doesn't sleep. when Momma is tired the hallucinations can be very scary. She thought there were live fish in her purse. She thought there was water running down the walls in her room and that we would all drown in our sleep. When the dementia receeded, she slept for a couple of days. We've only had one bad episode, but I knew then that I needed some help. Thank you all for letting me share and for sharing your stories - I don't feel so alone.

I would like to know what is the cosing my95 years old Mother who soffer from dementia no to be able to sleep for 48 to 72 hours at the time and, when she finaly go to sleep, she would sleep for 24 to 48 hours with short interval. This append three times in the last seven months . Love to hear from you.Thanks.

My grandpa sees people daily, usually my son who is at work, he will sit there and carry on a conversation and then he will get mad all of a sudden when my son dont answer him, he also see cats and dogs. Dr says it is normal and could be could be he sees an object and and it looks likr something esle. when he was still walk he would think corners were toliets and vases and just pull down pants and go, it was awful. we tell him to reach out and touch the person or object to see of real, but that only works if he is not tihnking a pillow is a cat, cause he will be able to touch pillow. but if nothing is there that usually works.

Yellowfeever, I know when she talks about the people and asks if they are staying for dinner, I tell her not unless they cooked it.I mean come on, I work all day and they are home lounging around the house! going from work to home it's like entering and alternate universe....but everyday is an adventure:-)

My mother had more illusions than delusions. For the longest time she thought "a lady" did the laundry. I asked her who the lady was? She said "lady" walked past the window with a clothes basket. I remembered the day before I hung clothes outside on the line and walked past the window. So she interpreted me as the "lady". Mom remembered this for months, it drove me crazy.
I tried the reasoning approach for a while. But the lady was stuck in her head. So I went along with it. Sometimes I would swear at the "lady" for not washing the clothes or putting them away. My mother would laugh her bum off at me.
Mom did this with other things too. She would see something and twist it to fit into her own reality.
The best solutions are go along with it. If it is something that scares her than chase them away. Step into her reality to try to alleviate her fear. Try to find things in the house that could be mistaken for a person or something to fear. Try to monitor tv programming. One instance my mother was in fear that a tornado was coming. I realized that the local news had a commercial promo for there accurate weather and sure enough there was a tornado warning clip featured. (tornados are rare here) But that had mom in panic mode.
This delusions/illusions should pass in time. So don't loose your sanity in the mean time just try to bear with it.

tltimme, I'm upset that she's stil driving.
You know, in Spain they have the bull run every year. Dealing with Mom is like going up against a bull. Sometimes I just want to run the other way! lol

cqfollansbee, still driving???? We were lucky I guess, mom had 2 minor accidents in 10 months, no injuries just little damage to the car. However, with the last one the cop reported her to the state. So they sent a letter telling her that not only would the doctor have to verify that she could drive but she would have to take a written and behind the wheel test. We didn't pressure her, but she knew that she would never pass a written/road test so she surrendered the license. I cannot tell you how happy I was when that happened but I didn't have to be the bad guy.

If it helps, everything I've read indicates there is no point in disagreeing. Rather, gently change the discussion to something along the lines of what they are talking about . I often just have to validate Mom's feelings of disappointment, anger or whatever and then switch the subject. It is't always easy!

This is worse than dealing with a child at any age, in my opinion. I'm having a bit of a bad day, so don't mind me.

Mom is still driving. Yesterday she told me she missed the road she needed to turn onto to go to the car repair shop. (the car is older and has some sort of noise). The fact that she told me is amazing! She said she was really far away from the street before she realized she'd missed it and turned around. She did get there, though. I don't like this. I talk with her, but to no avail.

This morning, the repair shop said it may be expensive to repair this older car - lots of rust. She said "I may not be able to do it". I responded that it may not be worth repairing.

"It would be really hard to go grocery shopping without the car!", she exclaimed. Well, Mom there are other options, friends, a senior shuttle....

A light went on in my head. Maybe this is how I get "in home" care in
place. ??? Well, I can dream, can't I?

I did both with Mom - when she was frightened by the people - particularIy the man in the bathroom - I turned on all the lights and walked around the room to show her no one was there. When she wasn't frightened but just having a converstion I would join in. Whatever gave her comfort.

Mom isn't taking any medicines for the dementia yet. She has a neuro pysch evaluation coming up soon to really pinpoint what type of dementia and so forth. I live with her so I know that she is safe as much as I can make her, however, since her reality and my reality are so different I am not always sure if I am doing the right thing by humoring her.

tltimmi - I had to laugh at your post. My Mom cooks for her "kids" and gets sooooo mad at them. She says what she really wants to do is "throw the plates at them. But I don't want to clean up the mess!"
She checks the beds every morning but noone is ever in them. She can't figure out where they go before she gets up (usually at 5 am). They usually return at about 3 pm.

Humoring them is best, I guess. I call at various times of the day but always try to make at least one call at dinner time. Last night, at 6:15, I said she should hang up and eat her dinner. This morning she said she finally ate at 8pm because she was "tired of waiting"
I agree with you, I don't want her to be afraid in her own home. I am afraid of the situation, though. She is not "afraid" of these hallucinations, but the cause her to be angry and depressed.
So far, she refuses to take any medication other than her heart and thyroid meds.
Do your parents take meds for the dementia? If they do, do the meds help remove the hallucinations?

Jeanbird, maybe we should get together between your hubbies two monkeys and my mom's belief that our dogs tail is an entirely seperate entity it could make for an interesting afternoon. My major worry with the "wee little" people that she sees is I don't want her to feel scaried in her own home. Otherwise as long as they don't demand I make them dinner and do their laundry I don't care how many people she thinks are in the house with us.

My husband sees two monkeys in the trees in the back yard. I just humor him. I sometimes agree with him and sometimes I say I can't see them but blame my eyesight and sometimes I guess I didn't look fast enough. So far, that satisfies him.

When she goes to the neuro, they will do testing. May do:

-Folstein /Mini Mental State Exam (MMSE) 30 point test. Takes about 10 – 30 minutes & looks at math, memory and orientation. Is copyrighted, so not given as much. If her MD is with a medical school, Folstein used more as they pay for it's use. My mom's first Folstein was like a 25/26 and stayed in the 20's then sadly went to a 10, so no more Folstein for her. Folstein has problems if they are not native English language speakers or have limited education in being accurate.

or The Mini-Cog: a 3 part test:
1) name 3 objects then repeat back, could do this 2 – 3 times;
2. draw a clock then
3) repeat the 3 object words from earlier. This should take 3 – 5 minutes. What this checks is recall of new information, orientation to time and date, and clock drawing into a single score that can accurately determine if someone has cognitive impairment and its severity. Not as accurate but easy to do. Don't help her or answer for her either!

A MiniCog every 3 mos is also good. My mom's gerontolgist does it this way.

Having a baseline Folstein/MMSE done & repeated is really helpful to be realistic about what careplan to take. Same with scan on brain shrinkage & what part of the brain.

What might be helpful is to do a list of what she does & take to the appt, like:

-Recent memory loss-ask you the same ??’s over & over. Write down the ?'s and how she responds when you give her an answer
-Difficulty performing familiar tasks- cook a meal but forget to serve it. Put on pants but not panties.
-Problems w/language-may forget simple words or use the wrong words. They can’t finish a sentence, say the same sentence and stop at the same point
-Time & place disorientation-get lost on their own street. Night is day, stuff.
-Poor Judgement-forget simple things, like to put on a coat before going out in cold weather.
-Problems with abstract thinking. Classic example is balancing a checkbook, people w/dementia may forget what numbers are and what has to be done with them.
-Misplacing things – Putting things in the wrong places like iron in the freezer or a wristwatch in the sugar bowl.
-Changes in mood-fast mood swings, going from calm to tears to anger in a few minutes. They become suspicious, paranoid or irrationally fearful.
-Loss of initiative-may become passive.

None of these happen overnight or all at the same time. A lot of what happens depends on what type of dementia. My experience is that getting them evaluated by a geriatric MD or nerologist makes a huge difference in deciding the best care
so it is great that is scheduled for your mom.

Another thing is the physical changes, if you are with her daily, it's hard to do. Best with someone who knows her but hasn't seen her in weeks. With my mom, we would come in 2 - 3 times a year. With my mom. I noticed how she walked changed, she does a "shuffle" walk-feet stay flat on the floor, moves in short, flat steps, she really cannot pick up her feet to walk, stairs are a issue. The shuffle was another tip off that she probably has Lewy Body dementia, she also has episodes of stiffening arms/legs. It's fleeting but happens.Yet she is very cognitive and knows current events and who people are. Like she can tell me exactly what they had for a meal (correctly) and that they put poison in it (incorrect).

Sometimes it's things that seem kinda normal but aren't. My mom had this line-up of jelly and other grocery items, like a dz+ Smuckers. After she went into IL and I was clearing the house of 50+ yrs of crap, I ran across grocery lists, inevitably they would have "jelly exp", "tuna exp", as in expired on them. I figure she would look at the jar and read exp 6/06 and then logically and correctly would write it on the grocery list, go to the store and buy a jar, but then there would be the disconnect in actually getting rid of the jar, it wasn't about the last bit of jelly being used either, she couldn't connect the dots. If I asked her, it would be about oh that's right, it's expired, I bought a new one very matter of fact. She is not being able to get to the end of the equation, not being able to do abstract thinking.

She is seeing a neuro psychologist for a complete evaluation soon. She does have days when she is really together and then there are really confused days like today. I just want her not to feel scaried in her own home.

It may be that your mom needs to move from home to another level of care, you said you are there/live there. 77 is so young but your never know. Has she seen a geriatric neurologist? That might be the next step to get her set on a new plan of care

tltimme: Mom's "kids" people she says she doesn't know, too. But she calls them by my younger siblings names.
I had an odd experience with Mom last night. She asked me if I'd left the tv on the night before. There is no one there but her, and I did speak with her on the evening in question. When I told her I hadn't been there, she paused for a moment and said, "Oh, well, whoever it was left the tv on". She must have forgotten to turn the tv off herself.
I help her balance her check book over the phone. I have her turn on the speaker so she is "hands free". On one occasion, she was holding papers up to the window so I could "see" what she was talking about. This isn't funny, but we laughed about it when I told her she was being silly.

On retrospect my mom, who is in NH as of this year, had dementia related paranoia, issues with language and difficulty with familiar tasks since 2005. To this very day on a good day, she appears lucid, knows who people are, can carry on conversations, can get dressed and potty on her own most of the time, she is totally ambulatory with just a free standing cane. She’s in her 90’s too. But if you talk with her past the 2 – 3 minute conversation most people do with the elderly, it is totally scary……animals in the corner, gypsy children who live in the building, amputee roommate stole her TV, poison in the rice, dancers in the room.

With my mom, who probably has Lewy Body Dementia, misplacing things was/is a big issue. When she was in IL, she would hide stuff in flashlights, then go into a fury that she had been robbed and would call the police and file reports. Her paranoia got to the point where she called a nephew to take her to the bank so she could withdraw all her money as “they were trying to become her”. She would cut off the tops of empty Kleenex boxes and nest them within each other BUT she would hide “important” stuff within the layers. Then when she couldn’t find the $, travelers checks or family picture, she would call the police. When she went to lunch or an activity, “they” would go to her apt (when she was in IL) or to her room (at the LTC she is in now) and would use it as an office or hold meetings there because her room has the “special light”. Mom totally believes this is happening. There is no way to convince her that it is a “false belief”. This is so common.

How to deal with it really needs to be what works best for you. They aren’t going to change their incorrect perception, their false belief.How I handle it, is to say “You know mom, that isn’t happening” and then talk about her clothes and hand her an article of clothing or talk about what they had to eat or a plant if we are outside in the patio (she loves garden stuff) ; about ½ the time she moves on.

I will say that since my mom is in the NH and on the Exelon patch and all her med's are taken in a consistent & timely manner, the false beliefs are still there but she has less anxiety about it.

cqfollansbee, you hit it right on the head. Mom refers to the people as kids and that they are rude and don't talk to her. Sometimes I wonder if she is thinking back to when my two brothers and I were younger but she says she doesn't know these people.

Oh, geeze. I don't live with my 83 year old Mom, but we're dealing with the same issue. Humor only helps in certain situations. My Mom isn't frightened by her "visitors" but she is angered, hurt and disgusted because they are so rude. It depresses her a lot. I call her daily and often she is in tears because of these ignorant "kids" who should go home to their own parents! Or it could be my deceased father and grandparents who "went for a walk and must have stopped at a restaurant". They never sit down to eat the meals she has prepared. She sometimes goes out looking for them. It is her reality. It scares me, not her. My siblings and I tell her she needs to just take care of her own meals - to no avail. Good luck to you! Let's keep reminding ourselves that it is the disease challenging us, not our loved ones.

I know they are real to her and neither my brother or I try to change her mind. Although she seems to tell me more than my brother. I have even wondered if changing bedrooms would help as she says they don't go into my room. As for setting a place for them at dinner, I have told her if they are hungry then they should be cooking for us as I work all day and they are home. Trying to keep my sense of humor going but some days it is really difficult as I don't want her to be scaried in her own home.

Have a shaman come in and chase them out.

Seriously, they are very real to her. First see if you can figure out if anything is triggering their visits. Are there some corners that are dim? Try more lighting. Does a tree branch throw moving shadows on the walls certain times of the day? Pull the blinds.

Make sure that your mother's health is monitored. Many people, even without dementia, have hallucinations when they have urinary tract infections.

Then step into your mom's reality. To her, these people are really there. Isn't it great that you happen to know someone who is good at seeing these kinds of visitors, even though you can't see them, and you are going to have that person come over and evict them while you and your mother go to her hair appointment.

If they didn't disturb your mom, going along with them would be fine. (I think they are eating in the tv room, Mom -- we don't need to set a place for them tonight.) But since they frighten her, your best bet is to get them to leave.

Good luck to you!