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94 year old mother has Lewy Body Dementia. She lives with me. She fits her diagnosis to a tee. I deal with a lot of crazy things with her but when we go to the Dr she has sudden clarity that makes her appear much better than she is. Or if grandkids come to visit her she is a totally different person than what my husband and myself see on a daily basis. Does anyone else experience this type of behavior with LO?

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My mother has dementia, but can showtime like an Oscar winning actress in front of the right audience. I don't understand it, how they're able to hide the truth so expertly when necessary, but I continue to witness it all the time. I personally believe they rely on muscle memory to make small talk, fooling others into believing they're fine. But, if asked specific questions that require real thought, THAT is when the struggle shows up. It's all very confusing and aggravating, too, isn't it? They tend to make US look like liars or bad guys for trying to say THEY have an illness!
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AlvaDeer Aug 2019
You are SO right, and described it so perfectly, LeaLonnie. They can confabulate wonderfully with small talk. But when one gets specific with any testing it all falls to pieces. Often the "visitors" don't get beyond the social nice-ities to see the reality.
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I was just telling a friend about confabulation yesterday, cuz her dad is probably doing it.

My mom does it too. Frustrating. And she sound completely "normal" when she's telling stories to my kids or family, etc. but I KNOW that what she's saying is suspect at best. Guess it doesn't really "matter" but just kind of weird.
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That's surely very frustrating for you...
(I didn't know patients with dimentia could act more coherent by choice!) Odd. It adds: "insult to injury", cuz you use so much energy caring 4 them & they manipulate you like that. Pretending they're fine, & you look like a liar? That would be quite discouraging I think. Sorry ur hurt.
My mother acted nice 2 anyone but me, but I never had her checked for dimentia, cuz she'd always been that way.
I wish you well friend, please try to have yourself a massage or something you'd like once in a while.🌷
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Getkicksonrte66 Aug 2019
I don’t think they have the wherewithal to manipulate. It’s just something there able to do. My sister can seem “normal” for 10-20 minutes but after that it all falls apart. Give them a memory test, and you’ll see they cannot actively manipulate diddly squat.
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My mom is the sweetest person around others. The staff at rehab described her as a "joy". But when you get past the facade, things begin to fall apart. Problem is she can keep going long enough to fool most people. She keeps her true self for her daughters and my dad. Negative, stubborn, demanding and self centered. Did I mention downright mean at times? It seems as though she has a switch she can turn on and off at whim. Very frustrating... part of the disease, but in my case, part of her personality. No...you are not alone in this journey....only those who live the day to day know the reality. Good luck, this isn't easy, but this site does help get us through the rough patches.
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againx100 Aug 2019
Lordy, that's annoying!
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My mom, does her best to mask her cognitive decline in front of her doctor. Up until a year ago when I contacted her doctor about concerns the family was seeing with her he had not picked up any signs that she was in trouble.

Once we made him aware he started questioning her and found there was reason for concern and ordered tests and referrals for further evaluation.

No no matter how bizarre mom has been acting during the day, she miraculously tones it down for the doctor hoping he will agree she is able to live on her own again.

We always make a point to confer with doctor prior to her visits so he is aware of any changes to behavior that may be of concern. As soon as doctor visit ends so does her facade. It is fascinating to watch.
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cindic0911 Aug 2019
So smart. We figured this out with my father in law. He was off his rocker at home then able to ask and answer the right questions for the Doctor. Was so maddening, because we knew he was in trouble. I started writing a short note explaining our concerns for that appointment and his medical conditions at the time. I would give it to the front desk and request that the Doctor review it before stepping into the room. It was the best thing we ever did. The Doctor's actually appreciate the help and seemed more receptive to us.
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My dad who has frontotemporal degenerative (FTD).
Even says “hi” and nods with a smile to the palative care team.
But looks pale and depressed otherwise.
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So glad you posed this question. We walk away every time we are with my father in law just shaking our heads and with hurt feelings. With some family members he just flat out pretends to be asleep in his chair. With us he acts like a sad miserable man and wants everyone around him to feel bad. He has one sister so wrapped around his finger its abusive. When a pretty nurse or his aide or the baby of the family comes in, he is as pleasant as can be and can miraculously hear again. It is so irritating because my husband, his sister and me are the one's that handle everything for him. He is in assisted living now and his needs are met. If we were still caring for his ADL's I think I would throw in the towel. What is Lewy Body Dementia? I have never heard of it. Would love an answer. We used to take it personally then we thought maybe its because we are the one's that he sees the most. Confused..
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Lymie61 Aug 2019
Or the ones he is most comfortable around, trusts most. It's like being married once you live with someone you start to let your "front" down and start throwing your socks on the floor, subconsciously he knows he isn't going to send you away by not putting on his "best self", it isn't an insult it's a loving complement. Hard to live with but a compliment still the same.
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No, my Mother had Lewy Body and anyone that talked to her would know that. But she was always pleasant and sweet. Never saw her get angry or nasty.
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Isabelsdaughter Aug 2019
This is funny, all these people saying that their parents put on a happy face for certain people and would change their personality. My mother never did that, She would sit and state and might answer a question monotone now and then. But, no, she didn't change and put on a show. She had lost her personality. Maybe the meds did that, I don't know.
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OMG - That is my Dad to a tee. I asked the neurologist about this and he stated that this is one of the most common issues their loved ones/family have witnessed. We would get into the car after our appt and it would be back to LBD Dad.
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My mom's Alzheimer's symptoms could come and go on a moment's notice. When I'd take her to lunch with some of my colleagues, she was totally lucid and "with it." When  I told one of these friends/colleagues about my mom's delusional behavior at times, she said she had never seen that with my mom. That was pretty standard:  I think my mom knew when she had to be on her best behavior, and when she didn't. I even wrote about or experiences in a book, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." We once had to take her to the hospital because of behavior issues, and at the beginning, they didn't know why she was there. After  a while, though, her "true self" began to emerge. It's very frustrating for everyone. Best of luck.
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With some patients it sure looks like 'manipulative behavior on purpose' -- and with a few it probably really is.

With most patients, it's more like 'it takes a huge effort to act socially acceptable, and when the stranger has left I can relax'.

Social skills are often the last part of verbal interaction to disappear. I had a patient once who was nearly non-verbal with the womenfolk of family and staff, but whenever she heard a man's voice she would become charming, even flirtatious. Took a long time for her male primary care doctor to realize that she could no longer live alone -- he was so blinded by her charming joking around that he missed the confabulation.

Meanwhile she was leaving her apartment at 3 am to knock on the neighbor's doors and say 'they're not supposed to leave me alone, I don't know what to do, can you help me find my daughter' (the daughter lived in another state).
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We all act differently in front of various people and circumstances in our lives. Maybe more reserved or polite in the presence of professionals or people we want to impress. People with dementia are no different. For the most part, they know who they’re dealing with and what social mores are expected. Lewy Body Dementia can only be definitively diagnosed by a autopsy. My mother was diagnosed eight years ago. Her symptoms matched the diagnosis but it turned out that she was over medicated. The hallucinations and other symptoms that she had were a result of that. We can’t attribute the sometimes lucid and selective behavior as being a choice when it’s more like a learned behavior that is resurfacing. The brain is a complex organ that scientists and doctors are still trying to figure out.
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Oh dear, am I familiar with "showtime". I get it all the time from my brother. He has advanced dementia and can still pull it off. Sometimes the nursing home sends him to the hospital by ambulance and I meet him there. I think the only part of the report the NH sends to the hospital is read are the med. list. They ask him questions and he answers them incorrectly, but no one would ever know. I have to pull them aside and explain he has advanced dementia. Only then do they get it. They will discover it if they talk to him long enough, but I have seen the master of magic appear and maintain for awhile... It happens with the few people who visit him too. I keep my sister informed about his condition - they send a friend to confirm...grrrr...and he acts as normal as can be. However, the last time she came, he did fall asleep while she was talking to him. She thought he was dead...I just cracked up and said, "I guess you can see what is going on a little better?".
It is no reflection on you. It is part of the condition.
Dementia patients know there is something wrong, but can't figure it out. They try to protect their dignity by acting normal. In their minds they know they should know the answers to questions and learn how to wing the answers. It is one of the saddest things to watch. Now it is difficult for him to continue to hide his condition, but still works at it.
Try to be patient, try not to take it personally and don't beat yourself up with guilt or feeling foolish. It is no reflection on you. It is just part of the program... :(
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YES!! Even now I feel my Mom is playing me.
My Mom is such an adult when around people! When its just her & I, she’s unable to do anything for herself & has major temper tantrums & I'm sure it’s all valid behavior for Lewey Body Dementia but again...when around other ppl including her grandchildren she’s Grandma and she is the adult!

Once, when she was still in a rehab facility, she was acting out badly & I asked her why she was acting this way? She told me ‘This is what they expect of me. This is how they expect me to act, right?’
That comment blew me away & I still don’t know what to make of all of this!
You are NOT ALONE!!
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This is so common in people with dementia. It is as though they have an innate need to appear normal to certain people. I remember my MIL one time had a visit from her step-sister and she talked so normal, the sister kept looking at my husband and me as though we were crazy for believing MIL had dementia. That is, until MIL started saying her husband who had been dead for 3 years was coming that afternoon to pick her up to go shopping. I don't believe they are deliberately trying to "play" us. I just think it is a coping mechanism they display when confronted with a situation they can't handle or have some subconscious need to appear normal.
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OMG YES And as a daughter in law she use to be somewhat nice to me. But now she can be down right mean, to the one person doing everything ( and I mean everything) for her...
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Delberte Aug 2019
I thought it was only me, I feel like she's playing me all the time! My wife's caretaker says she has no problems with her yet when she leaves my wife can't seem to do anything.
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My grandmother has it both ways.

Sometimes having guests or being on an outing whether adventurous or mundane can cause her to recess and interact very little. Other times she is as lively as a schoolgirl.

In my experience, dementia, any type, can come in ebbs and flows, but when the one afflicted with it is gently nudged to increase his or her engagement with the outside world or even an individual, it seems to be very beneficial.
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So frustrating to take MIL to doctor where she bounces back into the waiting room after the exam, no walker, no cane, seemingly sharp as a tack at 89, but then get her home and the forgetfulness and confusion start again. Combination of show timing and the doctor wanting to get on to the next patient and seeing nothing wrong because of Oscar worthy performance on part of MIL. They forget everything else recent, but not how to be sneaky or manipulative.
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Anyone can appear cognizant for 5-10 minutes, average time spent with a doctor.
It takes a deeper interview to see dementia. I had to laugh because my doctor signed me up for Medicare Wellness and every year it's an extensive interview with a Wellness Nurse to determine my cognition. I'm 67 and I agreed to be signed up for this free service. Some of the stuff makes me laugh. Some is outdated and I tell them that too. "Draw a clock with a specific time on it" is no longer used due to digital clocks, lol.

But yes, anyone can fool a doctor for a few minutes.
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This condition is unbelievable. When it is just the two of us my Alzheimer's husband can barely walk, and can't put two words together, and refuses to do anything. But as soon as a medical professional is here, he walks with no problem, and answers questions with a full vocabulary, and does what ever they ask. I was beginning to think it was all one big joke he was pulling on me to get my full time attention, then I learned about "Showtime". But the strange thing is, none of medicare nurses or therapists who come to treat him have heard of "Showtime", and I have to explain it to them! Now I'm wondering about their qualifications!
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I had a sister-in-law who had had brain tumor surgery, and she would showtime with the best. I often took her to doctor's appointments, and too many times someone who hadn't seen her before would miss what was really happening. I finally got her in to my own doctor, who picked up on it and got her the appointment with a neurologist. What was really frustrating was that her sister would take her to apply for disability coverage and she'd look totally reasonable.
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New member now but been lurking here while...nothing useful to add but THANK YOU for posting this question!! I thought I was the only one with this situation!!! My mom's energy level is through the roof, her clarity goes in and out with increasingly bigger swings, and in general she really fools people into thinking she's got all her marbles. It's incredibly frustrating when people don't listen to me and then this creates situations with more drama. For example mom was kicked out of church ( Episcopalian! ) for exactly what I'll never know but can imagine...they couldn't read the dementia on top of a difficult personality...anyhoo you get the picture here!

So grateful for you guys on this forum!!! Hugs to everyone
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yes there fighting for there independence they here/ they fee/l and understand they have moments of clarity just cant express it, they attach to one person and kind of forget others even tough the know when someone cares and loves them she will become child like, my experience as a pvt cna here in my home with my mother that has pasted about a year ago with the same lewybody alt. let her do what she can do let her love the children supervision will be need as progression
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My mother and MIL can both only 'fake it' for so long and then they just can't keep up the charade of everything being 'ok'. They can hold it together for a dr's appt so they keep avoiding that dreaded dx. Drs don't have enough time to mess around with a cog eval when the patient is just in with a UTI or a flu shot.

Neither has been technically dxed with dementia, but both have a degree of it. In both it shows itself as 'fake sweetener' but only for a few minutes. With my mother, she just loses the ability to keep track of what's going on. Kind of retreats into the past and muddles around trying to be 'normal'. There's no shame in being forgetful and aging, but she disdains those she knows who have 'lost it' with such venom. Sad, b/c she is as bad or worse than anyone she's talking about.

My MIL can talk coherently for about 10 minutes and then ALL of her conversations drift slowly but inexorably into the 'poor pitiful me' category, where she has to have totally sympathy for her horrid life, her horrid marriage, her ex-husband's horrid family....and I mean, EVERY SINGLE FLIPPIN TIME she talks to you. She has been this way as long as I have known her---it's much worse right now, but does that mean she has dementia or she's just a mean person? Who knows? Dh has given up, and I mean, GIVEN UP even attempting to have a relationship of any kind with her.

I told my mother over 10 weeks ago that I had cancer and she responded "Oh, well, your daddy will be so glad to see you." (daddy died 15 years ago). How does one respond to that? I said 'well, I'll say hi to him for you' and I left.

10+ weeks go by and I hear NOTHING from her. I'm half way through chemo and I have heard ... Not a peep. Suddenly she's calling me, acting all interested in my treatment, and I know why: she wants to be the person at Bingo who has the daughter dying of cancer. Didn't give her the satisfaction, I barely spoke to her and when I told her I am NOT dying, she seemed disappointed. Which I am sure she is.

She doesn't know how to use her phone so she has to get someone else to dial for her. I call screen and only return her calls if I feel like it.

Dementia is ugly and depressing. I know I will be there, one day. I just hope I am am a sweet crazy not a mean one. I don't think I can control that!
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Nurserygirl9 Aug 2019
I hear yah. I feel for you my family husband and 21, 26 yr olds live with MIL. At least I have 3 other people to help keep me sane. I just put my dog to sleep, sister has lung cancer, I'm so sick right now with Crohn and I go to bingo on Sundays only if I feel up to it. Every Sunday she asks...Do you have to go. I say Yes I need to go. That's just the tip of the iceburg I can't imagine having 2 to have playing with your head. I hope you are getting better. And beat the cancer. Then we can go back to just thinking about beating them. (Only kidding) lol sometimes. My MIL is mean all the time. Best is when you shut a door and she talk to herself behind your back out loud. AARRGG! BEST Wishes.
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Seen it with my own eyes and was shocked beyond words. A knock down drag out at home, totally out of control, talking about dead people who had been visiting all day, one spying on her while sitting on a tree limb outside the house. Was going to take her to ER and she got really violent and we were afraid she would try to open the car door while driving. Soooo- called an ambulance. It was like someone installed a different memory card. She answered EVERY single question correctly, very calm, smiling, chatting it up with the EMT guys. You could have knocked me over with a feather.

From posts on this site, I now see that it is very common.
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My mom was like that. She could "turn it on" for the doctor and some people (particularly men, LOL). I could still see the dementia and irrational (and utterly false) things she was saying that were just delusional, but she was smart and could "pass" as normal if she wanted to for brief periods of time. It is crazy making, why it is important for a relative/close friend provide history for doctors.
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I too care of an 86 year old with vascular dementia. It's always one big senseless drama after another but she is intelligent and presents well for the most part. She is the most out of touch with reality person I know other than a paranoid schizophrenic nephew. She constantly calls everyone "crazy" because she senses that describes her own self. She is desperately trying to prove that she doesn't need caretakers and there is nothing wrong with her. It is tragic and can wear you down. I was able to quit the job at burnout but with a parent you can't exactly do that. Good luck and hang in there. Rosalyn Carter wrote a book on caregiving. It might be useful for you.
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It is called “ show time “. My mother was able to appear “ normal “ in public e. g. Restaurants, for quite awhile which made me feel even crazier because I knew that behind the smile and nodding - she lacked any comprehension. She was very attuned to other people’s speech inflections, facial expressions, etc. which fooled people. Once her dementia reached a certain she was unable to pull it off.
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My husband also has Lewy Body, and he too can muster up enough energy to fool Dr's and ER personnel. When I first started reading and learning about LBD, I would read about "show-timers", that is when they can all of a sudden react normal, but as soon as they are in their own element again, they get depleted of the energy they used to present them selves as normal, but then they return to their same weakened state. The first time my daughter and I witnessed it with my husband, we both looked at each other and could not believe the transformation before our very eyes. My husband can carry great conversations with the medical staff, but almost everything he is telling them is not true. The disease keeps us caregivers on our toes, because it is like a roller coaster with so many ups and downs.
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YES WHEN MY DH GOES TO THE ,YOU WOULD THANK THERE IS NOTHING WRONG ,THE DR. CAN SEE THROW THAT.HE CAN;T HIDE IT AS WELL NOW
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