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?
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!
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.
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.
-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.
-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.
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?
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?
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
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.
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.
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.
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