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For the past year, Mom’s been exhibiting signs of dementia. I was extremely concerned. I pushed and pushed for my father to take her to a doctor. After months of pushing and offering my help, he took her. She has since seen two neurologists, done several brain scans, had blood drawn, and taken the MOCA test. Both neurologist have recommended a psychologist. She has “good” days where she’s perfectly normal, but most days she repeats herself and (I feel pretends) to forget grandchild's name, won’t cook, won’t clean, and does mannerisms someone would expect of an Alzheimer’s person.


My gut tells me she’s faking. It’s so incredibly infuriating. Are the neurologists saying, without actually saying, that she’s faking it? Am I crazy? Should I treat this as an actual disease in case something is really wrong?


Ps. She’s always exhibited “needy” tendencies and issues with control. This only exacerbates my suspicions.

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What difference does her behaviour make to you, apart from being annoying? If the only thing is the trials of taking her for test after test, with the best medical assistance you have had being that nothing is wrong, then stop. You’ve done the best you could reasonably do. She’s only 55, so your father is probably young enough to be the major player here. He can do the cook and clean on days when she won’t. Leave it up to him to work out when to intervene. You can just leave if it's not a great day.
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I agree with Dr Gross who posted further down. A neuropsychologist will do a comprehensive assessment which will not only include cognitive tests (using more sensitive tests than the MoCA which is only a brief screening tool), but may include assessment of personality factors. A full evaluation will include tests which highlight malingering (faking) - and they cannot be faked! They will also assess for mental illness such as anxiety and depression. You may find that for your mother it could be a combination of all of the above, or only some aspects. The results of a comprehensive neuropsychological assessment will provide a treating psychologist with valuable information for treatment planning. I am rather surprised that neither of the neurologists have referred your mother for a neuropsychological evaluation.

Wishing all the best for you, your family, and especially for your mother - an empty nest takes some getting used to, your mother may be grieving and feeling quite lost and without purpose anymore. Hopefully, with a sensitive approach, you will be able to get your mother and father to understand that an evaluation is the first step toward understanding what is happening and why changes these changes have come about, so that they can get some meaningful help to recover some happiness and contentment.
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This is a bit off topic but there is something off with her behavior whether it is related to dementia or not.

I don’t know anything about her sleep patterns but people can act bizarre if they are sleep deprived. My oldest daughter had a regular schedule and we both slept.

When my youngest daughter was born she did not nap. She did not sleep well at night. I was so sleep deprived! She would wake up to breast feed but wouldn’t go back to sleep. It took forever to get her into a routine.

We cannot think clearly without proper rest. Sure, a sleepless night occasionally won’t matter much but if it becomes prolonged it alters our behavior. Does your mom get enough sleep?

My brother was a restless baby. My mom said that daddy would take turns getting up with him and one morning when she reached for a bowl out of the kitchen cabinets she found a bowl with two eggs cracked in it! Hahaha, sleep deprivation can cause wacky behavior!
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What I would do is set up a camera in the kitchen area. One to see if she is safe and two; to see how she handles herself when she is alone. This will answer your questions. You may find that she is really ill. That is the only way you can satisfy yourself. We have two cameras (ring.com) set up - there are all types and easy to install - We could never anticipate that our mom was so unable to take care of herself until we saw it for our own eyes. It would be for her safety.
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KatD81 Mar 2020
I would not set up cameras in someone's own home. Legal issues aside, this would likely lead to irreparable trust issues down the road.

Definitely, definitely not a first recourse here.
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By "treat this as an actual disease in case something is really wrong" - what do you mean? What would you do differently, compared to what you would do if she were a proven, indubitable big fat fake?

Something is really wrong.
Either a) she is not faking, there is something seriously wrong.
Or b) she is faking, a person's choosing to imitate symptoms of advanced Alzheimer's Disease is quite an extreme way of acting out, and you would conclude that there is something seriously wrong.

What's your father's view? What sort of way forward is he hoping for?

How would you describe the impact your mother's behaviour is having on her and his life?

And what does your mother say about her own condition? If she believes she has Alzheimer's Disease, for example, how does she feel about that?
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NeedHelpWithMom Mar 2020
Totally agree with this, CM.
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Has anyone thought about testing her for the tick-borne Lyme Disease??? There’s been more than a few people that have been thought to have dementia, have acted like it, but it wasn’t, it was Lyme Disease.
That, or a heavy metal build-up, like aluminum or lead.
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Because some people doubt whether faking happens, I’m posting again about my own experience with my very difficult father. I went to see him for the last time (24,000 mile round trip) when he was in his 80s and in a facility. He was always a liar, and would fake anything, particularly if there was a dollar in it. He had a repeated track record of faking being a poor old man, in order to get free respite care and other benefits. On this visit, it seemed to me that he was faking some of the time, being fairly ordinary some times, and probably losing it a bit occasionally. As usual, the faking was more likely when he was dodging a question. I suspected that he was faking so often that he was actually forgetting when he was and when he wasn’t. A couple of times he got confused between stories. I talked to the CEO of the facility, and she seemed relieved that I couldn’t tell, because she also thought that a lot of it was fake. Pretending is quite dangerous for the mental health, even if you start out OK.

Of course none of us on this site have any ability to guess things with your mother. My suggestion would be to keep her safe, but try not to get a very exhausting run around. Eventually things will become more clear. In worse circumstances, I was still glad to know that my father was being cared for, even if he didn’t deserve it. That was enough.
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Have her see a clinical neuropsychologist. In early stages of dementia, some people perform adequately on a brief screening test like the MoCA, MMSE, or the like. Neuropsychology is the intersection of neurology, psychiatry, and psychology; we are brain-behavior experts. Neuropsychologists are experts in testing cognitive abilities as well as screening for psychiatric issues such as depression, anxiety, substance abuse, and personality style or disorder.

I have had many families sure the family member is faking or trying to fool them. In almost every case, this was not true even when the affected person had always been "needy." Personality traits can get more severe in early dementia, however.

A complete eval will address your questions and provide recommendations. We can reassess over time to determine whether there is decline and whether it fits a specific disorder pattern. Contact the International Neuropsychological Society (INS) to find a board-certified specialist in your area.
Dr. Gross
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I would dislike thinking that she is faking having dementia. She may be to garner attention, but at age 55? Wow. Get her to a psychiatrist.
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my mom has had similar behavior that ended up being a UTI...depression and dehydration can produce like symptoms
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pgross01 Mar 2020
Very true. Early symptoms of cold and flu can also mimic dementia in frail elderly. I suggest taking a temperature before anything else.
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Most people who are "needy" and thrive on extra attention and TLC will do almost anything to get what they want. And, the more attention they get, the more they feel they need. If you think she's faking, ask yourself if her good days are strategically timed (i.e. for things and events she would not want to miss). If you still think she could be faking, I agree with the previous suggestion that you back away a little and see what happens.
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Your mother at 55 is very young to have these symptoms, your gut feeling is that she’s faking, the symptoms come and go, she is getting a great deal of attention from all the fuss and the tests, and that might be exactly what she wants. On the other hand, what if there is something dreadfully wrong? One option (that other people can comment on too) could be to ignore it all for a few weeks on the assumption that it may be fake. Make sure she is safe, but cut out the fuss. See what happens. You can complete your checks, and perhaps other suggestions here may be worth a try. Then could you step back? If it’s fake, the chances are that it will get dramatically worse, and then fade away if you don’t jump. It could be helpful to wait and watch.
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lynina2 Mar 2020
I lost a dear friend to early onset dementia. She died at the age of 61 after 10 years of symptoms.
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My Mom and a friends mom had dementia symptoms worsen caused by taking a bladder medication. For my Mom it didn't kick in until she also took a thyroid med, the interaction caused it. My friends mother was on Alzheimer's med when she added in the bladder med.
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Weeroo Mar 2020
Also they can fake being well for a few days at a time if needed!
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I would take her to a psychologist.
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pgross01 Mar 2020
Neuropsychologist. Psychologists are trained to test cognitive abilities, but not in the detail that this specialty does. IQ rarely goes down in early stages of dementia, for example.
Dr. Gross
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She may have neuroses, depression or other psychological disorder.
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You need her to be seen by a psychiatrist and make sure the person has access to the prior records for review prior. She has an issue for sure. ANd if she is faking Alzheimer's...gees...I can't imagine the energy it takes to keep that up. I'd be exhausted. I will say that my mother and I (and we live under the same roof) have always had a rather antagonistic relationship and I clearly was not her favorite. Right under our noses the dementia crept in...she was always a little OCD and very controlling if not having the ability to be stubborn and obnoxious (probably terms she might use in re to me LOL). She became even more so. Things took a turn after a hospitalization for an emergency appendectomy. At the time we never had a thought about it all being Alzheimer's or dementia; never had her tested. She seemed very high functioning, if not slower in things like bill paying. Then one day the mail came when they were out and although I would never open anyone else's mail...something made me do so when it was from their supplemental health insurance...and they were 2 months behind (!!!) in paying the premium...not for lack of funds. I don't need to tell you how dangerous that could have been and thank goodness the insurance company was understanding...The moment of truth came when she seemed to be packing fine and was her snarky self at the airport check in counter when she and dad went to visit the good daughter in FL. My sister called within hours of their arrival to ask how I could ever think mom could travel? And then I refreshed my memory with stuff from the Alzheimer's Assn that has a list of 10 items to see if your person has the signs...and I could check off all of them. Which led to a call to the primary MD who pursued doing the mini screen at the next visit and she had been so slick, and so in her element at past visits he had never noticed anything...but she scored about 18/30. My point is...she could still have it or be developing it.
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I don't think she is faking.Your mom may be very depressed and have pseudodementia.A psychiatrist can get her out of that.She mave a dementia variant called Lewy Body - this sadly has early onset, and fast decline..I was a Psychiatric Crisis RN for 30 years on medical floors and in ER's. I hope you find out- I worked with psychiatrists sometimes who were baffled by patients.Severe depression can mimic dementia.God bless.
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A few years back I thought my brother was faking it too. I think this is a normal feeling because they are in and out of reality in the beginning. I know now it was my denial that he had dementia. At this point he has severe dementia. He doesn't remember anything almost immediately, is not recognizing some relatives and wants to sleep or lay down all the time. I push very easy activities on him to try and keep him stimulated. He reluctantly participates then loves it. I am making a childs puzzle with his picture on it - I am hoping he will get excited and want to redo it occasionally.
I agree with everyone that she should have a complete work up.
Good luck and stay strong.
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Before I would go down the road of the notion that she is faking it, I would be asking if any other conditions could present this way. Maybe it's not dementia. Maybe it is a B-12 deficiency, lyme disease, a problem with alcohol abuse or a new medication causing negative side effects. Your mom needs a whole body work-up and some diligent investigation to identify what is wrong before she is told "It's all in her head."
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Dear Anon, I relate to what you're saying. "She's always exhibited 'needy' tendencies and issues with control." "My gut tells me she's faking."

I'm 59, and my mom is 78. My mother is incredibly intelligent and has been diagnosed with major depression since the 1960's. I've spent a lifetime trying to figure out how much of her behavior is organic/physical versus just plain sociopathic/diabolical.

Don't waste any more years trying to figure her out. It's a no-win situation, since there's obviously something wrong with any person who would fake such symptoms. Munchhausen Disorder comes to mind; narcissistic personality disorder; borderline personality disorder, and just plain self-centeredness.

It's possible our mothers have a little sprinkling of all of the above, including memory loss. And yes, when a person with these mental issues actually has a little age-appropriate memory loss, they might exaggerate and use it to their advantage to get attention. In my case, I think mom has a little memory loss, and true to form, is milking it for all it's worth. I sense yours might be the same.

I am a big fan of Nancy Levin's book Setting Boundaries will Set You Free, and, although it may be unpopular to post on this forum, the book Divorcing a Parent by Beverly Engel. The second book doesn't mean you actually have to end your relationship with a parent, but the emotional gaslighting can be permanently stopped.

In my case, the quest to find out whether she was faking or not was exhausting and there was no relief at the end of that road. It sounds like you are doing right by her, that she has been tested and checked out. Please make sure to take care of yourself, even if your decision is unpopular with others. Nobody has walked a mile in your shoes on this one. All of our situations with our parents are unique. I support you 100% and say ALWAYS trust your intuition.
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Both neurologist told you the same thing, that she is having psychological problems. She is in need of mental health care, "see a psychologist". Have you done this? If there were an organic component indicating dementia or Alz there would be changes on the brain scans or MRI's. and she did so poorly on the other tests, she had to be exaggerating to do so badly. Take her to a psychologist for therapy and counseling.
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did she go to neurologist or neuropsychologist? My husband and I had my mom move in with us and took her to a neuropsychologist when her neurologist wasn’t being helpful. He did days of testing and she definitely had issues that needed addressed. Unfortunately he sent her back to her neurologist for follow up and the neurologist told her she was fine to go home alone where she did none of the follow up and refused to listen to me about anything and family members who were not even living nearby encouraged us to let it go. 18 months later brings us to January 2020 when she fell in her shower and I didn’t find her for 2 days. 2 weeks in hospital, to rehab and now going from the rehab where she continued to go downhill to a memory care facility. And I blame this on the Neurologist who was more concerned about her independence than her health. Had he encouraged her to stay with me or at least said it was not safe for her to live alone, she would have gotten help, would have still been eating brain health food and exercising at least some and had much more social interaction, all of which could have at least slowed down the progression of this evil disease. The point being to not leave it with just the neurologist - or even 2, but get evaluations from every type of brain specialist available as well as blood, urinalysis and body scans. Learn from my mistake of not pushing when everyone else said to let it go, because there may come a time when it becomes irreversible. Every day I regret not putting my foot down and insisting that this doctor was wrong or at least careless with my Mom’s life. Even the person lowest in their graduating class is called a doctor! So don’t give up until every door is closed tightly shut and you have done all you can.
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gdaughter Mar 2020
I am no fan of MD's but know there are some good guys in the mix. You're being way too hard on yourself. Even if that MD was wrong, supporting someone's independence is not bad with proper precautions. It's just as bad as the majority do to say to someone "you cannot be/live alone" and suddenly peoples lives are turned upside down, houses sold etc. Now I'm not speaking of someone with full blown dementia...but many people can function just fine with emergency alert buttons, knox boxes, in-home assistance, grab bars etc. and a plan to check on someone regularly.
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it sounds like she is lonely and figures if she fakes something, she will get the attention again that she feels she is missing.  Sounds like she misses the feeling of being needed by her children.  maybe if they call periodically or visit now and then, take her somewhere for lunch and set up another future date, she might feel still that she is needed.  maybe suggest she get involved in a volunteer service (meals on wheels, with a pet place, a hospital volunteer program).  I wish you luck.
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kdcm1011 Mar 2020
This was my MIL, who has mental issues all her life. We all swore she had dementia. Turns out it was an enabling, co-dependency relationship with my FIL that made us all think she had dementia. It came to light after FIL passed away.
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If the neurologist is recommending a psychologist, I would get an appointment with one.  It sounds to me like she may be depressed.
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Judysai422 Mar 2020
And/or they want full cognitive testing done. My mom was given a battery of tests for depression, which she has had all her adult life, a d cognitive functioning, e.g., a complete IQ test. She hated the testing because she knew she was not doing well, and she wasn't. Turned out her verbal IQ was below the normal range and her visual IQ was low normal. It confirmed a cognitive decline.
Oh, and by the way, she can be extremely manipulative when she wants to be. Told my DH that she threw tantrums when she wanted to get her way as a child...has done the same as an adult, but in more subtle ways when she wants attention.
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Hi
How is your mom’s walking? Is she in continent? I had a similar experience with my mother, her doctors were telling me she was fine. Two neurologists and a psychologist. My mom ended up having normal pressure hydrocephalus. I took her to Yale and they figured it out after 2 years Passed. They had just diagnosed her with dementia up until that diagnosis. The good day, bad day is definitely an occurrence with someone with dementia. If I were you, I would find a reputable neurologist (memory specialist) and try to have her see someone regularly so they might be able to see some trends. Good luck with your journey and I hope you get some answers.
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glendj Mar 2020
This is what I was trying to remember the name of! Definitely have your mom checked for this, it is a correctable issue.
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Funny about dementia and Alzheimer's. It always appears that they are just faking it. Have her check for a urinary tract infection. Believe it or not a UTI will give symptoms of Alzheimer's /dementia. If she is determined to have a UTI once it clears up she would go back to normal. However, it's just hard to believe that something like that could happen. Don't be fooled they usually are in distress. Take one day at a time. Be kind and love her.
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I think you have to be a strong advocate for her at this point. Something is off, whether she is faking or not hasn’t been determined.

My oldest brother (now deceased) was involved in a horrific motorcycle accident. He should have died. I was the only relative present at the hospital immediately following the accident. His death was unrelated to the accident.

I knew how serious the injuries were because the doctor told me everything in detail, including that he nearly died during surgery. He also told me how the accident would effect his future health.

In spite of many obstacles in my brother’s life, he was tough but he still had many complications from the accident. My younger brother always accused him of faking his issues. I told my younger brother that he was fortunate to have a few good days and that it may appear that he is faking but that I absolutely knew that he wasn’t because I spoke directly to his doctor.

I took care of him after the accident. His bike was totaled so he needed transportation to and from his doctors.

He asked me to accompany him during his doctor visits while being examined because he was afraid of forgetting something the doctor had said and I could speak to him about the visit afterwards.

I think if you joined your mom for doctor appointments and testing it could be helpful to both of you. If your mom allows you to join her and have medical access then you get to hear the facts straight from the doctor.
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I would get her to a psychiatrist to look for answers. And verify what the neurologist said (my parents were not very good at reporting what the doctors ACTUALLY said) preferring to interpret facial expressions and the like.

I discovered, after my mom stopped driving and I started taking her to doc appointments that my notes on what the doc had said were not what my mom "heard".
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Definitely check her mental stAtus. My mom was always controlling with issues of mild depression /anxiety when we were younger. Her mother had dementia in her early 60’s. My mother cared for her until she passed 10 yrs later My mother always felt she would have dementia, almost willed it. After the sudden and unexpected death of my brother her symptoms of depression and anxiety, forgetfulness, physical s/s of any ailments intensified. Yes she has now been Dx as dementia but I feel that along with her mental status, unexpected trauma of losing her son was the catalyst. So plz check her mental status as well she may not be faking it
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We thought my mom was just being difficult and manipulative when her dementia hit because we weren't expecting this at all. It was the last thing I would have ever expected we would have to deal with. Not even on my radar. Don't be quick to jump to conclusions she is faking it. Follow what the doctor is recommending and see it through. That may be the only way you get actual answers.
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