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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?

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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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
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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.
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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.
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