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My mom is only 65 years old. The doctors say she has “dementia” but won’t give an answer as to anything specific. She’s gotten a lot worse over the last two years. Her constant nagging, negative comments and shadowing is taking a toll on my poor father (and me). My mom can still dress herself (but she wears the same clothes most days) and she can still use the toilet by herself (but she doesn’t flush). Within the last 3 months she has accused my poor dad of the most horrible things ... mostly sexual crimes against her and other people. I know none of it is true, obviously. But I’m tired of hearing it, I love my father and don’t want anyone to even have to hear such ridiculous claims.


I know I’m supposed to “play along” with whatever she says or change the subject, but I refuse to agree with her on that! Changing the subject doesn’t help, she will get screaming mad and demand that I agree with her. What do I do? My dad refuses to put her in a long term care facility and because of her constant shadowing of him, he is forced to cart her around with him (every moment he’s not at work - she has a caretaker during the day).


Last week, she jumped into the car with a complete stranger who stopped by her house looking for my father; she demanded he drive her to my house (a few miles away) promising him that my father would be there. Two days ago, I stopped by, she answered the door completely naked. I tried to calmly talk her into putting on her clothes but she started screaming/crying telling me to leave her alone and stop treating her like a child. She eventually put on just a pair of pants, but refused to put anything else on.


By the time her caretaker (a woman) arrived she had her bra on. After speaking to her caretaker, I found out that it’s not unusual for my mother to be completely naked when she arrives every morning. It seems to me that she must enjoy the “thrill” of people seeing her naked. She even flirts with any man who will pay any attention to her and has walked out naked in front of her own grandson. Everything she says is either sexual charged or negative, no matter who she’s talking to ... and she talks constantly!


She takes Serequil (not sure how to spell it) and it took over a year of her irrational behavior before my father to even agree to start treating her with meds. I’m sorry to be so bitter but it seems to me that she’s slowly killing my father with stress. Any advice would help me greatly!!!

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EBE,
The thing you need to learn and remember is that your mother's BRAIN IS BROKEN. (Sorry didn't mean to shout.)
She isn't doing any of this on purpose. Her behavior is irratic because she has a disease called dementia that doesn't LET her think clearly.
I'm sure, before she got this, she would have never acted in this manner.

They don't WANT to be like this but they can't help it. You wouldn't punish a 2 year old for doing something wrong because they don't know any better. Well, it's the same with your mom now. She has lost the ability to reason and act rationally. It's not her fault.

I know you're hurt. I was too when my mother accused me of stealing from her, lying to her, wanting to do incestious acts with her and physically beating her....of course all were untrue. I ran out of the room sobbing. BUT, I knew WHY she said those things-because she has Alzheimer's.

You are going to need to educate yourself on dementia/Alzheimer's and then have a consultation with her doctor. Is she on meds for dementia? Read about the stages of Alzheimer's and familiarize yourself with what stage she's in. The more you read about her disease the better you will understand her and not hold this upsetting behavior against her. It really takes superhuman strength and fortitude NOT to take this personally. She is NOT doing it to hurt you or your dad, nor is she doing it of her own free will. Think of your mother's brain being taken over by the disease. She is no longer who she once was, I'm sorry to say.

Alzheimer's/dementia is a long, hard road for the patient, their families and caregivers. This is one level with a specific type of behavior. Next year it will be something different.

Give your dad some time to accept that he has lost his wife. He may not be fully accepting of her condition yet.

In the later stages it is practically impossible to keep them at home and he will be forced, by circumstances, to place her in a memory care facility.

My heart goes out to you all. I remember being where you are (but it seems so long ago).

You will come to accept her unusual behavior and disrespectful things she says as part of her disease. It will do you NO good to try to "set her straight ", because she is no longer able to tell right from wrong. You can try to pull her back into reality but she isn't able to make the trip.

I'm sorry. 😢
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EBE2002 Aug 2018
Thank you, SueC! I’ve read so much about the illness that my eyes are about to go crossed lol. I understand it’s not her fault ... but, yes, it absolutely cuts me to my core to see my mom behaving in such a cruel way. I have a mixture of pitty and anger even though I know she can’t help it. Sadly, I’ve had to quickly come to terms with the fact that my mom is no longer who she once was. I know for a fact that she would not be happy to know her behavior is causing her husband and children so much anxiety and stress. After a solid two years of wild unpredictable behavior, my dad seems to be very slowly accepting things, but his extreme delay in accepting the reality of the situation is costing my mom her dignity. Up until about 3 months ago, he was actually saying things like “I think she’s starting to get better”, “I think she may end up making a full recovery”. My dad is an extremely intelligent man and he has never been anything but a realist in life ... it pains me to see him be so delusional when it comes to my mother’s health. My dad has a huge circle of siblings, cousins, grandchildren, children and friends who live very close by; it’s not as though he lives far away from the people who love him most. And it’s not as though my mom is his last living family member or friend he has ... far from it, he’s a very loved person with lots of people who consider him a member of their inner circle; if he was elderly and had no one but my mom left, I could absolutely understand why he might become delusional to the situation, wanting to cling to his last source of love. For the last two years, my mom has been constantly telling me and my father “don’t put me in the crazy house. I don’t want medication, don’t give me pills to knock me out. don’t do that to me. don’t let anyone tell you I’m crazy, because I’m not.” I truly believe that my dad thinks when she says those things, she is saying them as a logical human being ... maybe he thinks that his formerly logical thinking wife is still inside there somewhere and he’d be doing the wrong thing if he went against those particular wishes. I’ve tried to tell him that’s not really her anymore and we have to do what’s right to protect her and keep her safe. I just want him to realize that loosing her in this way is truely horrible for all of us, but he shouldn’t allow this disease to consume his happiness in his life, like it has already consumed my mom’s. I asked him to please just put her in a place where trained medical professionals can medicate her easily as her disease progresses and her medical needs change, where they can aid her properly, make sure she’s is getting her nutritional needs met, give her all around proper medical care, where they know how to safely calm her down when she becomes combative, where she can live a life of dignity. Will she be “happy” in this place? Probably not, simply because her mind won’t allow her be happy or peaceful anymore.
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The only advice I can give is to perhaps have the doctor change her antipsychotic medication to a different one. My mother would get mean and threatening on one particular med but on Seroquil she’s calmer and sweet. People are different and our body’s react to medications differently.
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you mention UTI's in your profile. does she get those a lot? Ive heard with older adults there aren't  always physical symptoms but are mental symptoms
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EBE2002 Aug 2018
Good point! This is the first UTI I’ve ever known of her to have. But for the last year and a half she has been drinking excessive quantities of regular (not diet) soda. She may have had a UTI and didn’t know what it was. I had her caretaker pour out every canned soda in the house. I told her if my father buys anymore, to pour them out too. My father inables my mother because he looks for anyway to make her happy to stop her constant fussing. She’s also become obsessive with wanting ice cream. She believes that anyone who enters her home should have ice cream to give to her, and if they don’t have any, she will tell them to take her right then to buy some. Bless her heart, she can’t even tell the difference between chocolate and strawberry at this point ... all she knows is that she loves it and wants it!!! Between soda and ice cream I bet she’s gained 50 lbs. She is currently a size 16 and is about 5’3” tall. I’m 5’6” tall and wear a size 4 ... she will pick up my blue jeans and attempt to put them on, thinking they are hers. She truly has no idea that she’s now carrying around 50+ extra pounds or why she can’t fit into the smaller pair of jeans. Until my dad decides to lock the pantry and start limiting her sugar intake, I’m afraid that she will not only have more UTI’s but may also develop even worse medical problems ... her delicate frame is visibly struggling to carry her.
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My sister (early dementia) was recently hospitalized due to a fall. They gave her Seroquel. She began having the most horrendous hallucinations imaginable. Horrible! Her children demanded they take her off Seroquel. She was taken off and all hallucinations stopped with a couple of hours. She was back to herself. If you Google Seroquel, you will find that it says DO NOT give Seroquel to a person with dementia. When my mom would try to wear the same clothes, I went to the store and bought her three or four changes of the SAME outfit. I would switch them out and she never knew. This is part of that disease. Mom would forget to flush the toilet too, so I got a piece of wood and made a beautiful sign. Painted on the wood "Flush Toilet" in pretty writing and nailed it to the wall directly IN FRONT of the toilet. She pretty much never forgot again. Best of luck to you and your dad. I am so sorry you are going through this. I know it is not easy!
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EBE,
We recently lost our Mom to an 8 year bout of Dementia, it was the hardest thing we have ever had to witness. Each of us finally understood about 2 years into the disease, Mom was gone and that did help some with "grief relief" but her husband (they were only married one year before she was diagnosed) stood by her, what a saint, and kept her home until the end.

What I am saying is your Mom, Dad, you, and family members are experiencing the symptoms of the disease as it progresses individually on different levels. As the child you want to Mom to be as you remember her, Dad wants her back, and Mom is is at the mercy of the disease and the best that can happen is you keep her safe, comfortable, and continue to love her.

Often times as the disease progresses she will become despondent almost docile, but you have a bit to go to get there (so it sounds). Our Mom would pull down her pants in public places asking people if they "Want some" and oh my we were mortified the first time it happened - we put loops on all her pants and added a snug belt so she could not.

As far as hygiene that was a little tricky, but got her to come and get us when she was done so we could flush for her - she never was able to connect the dots on the need for flushing. We also learned to limit her choices to a couple of mix 'n match outfits and placed them everyday in one particular dresser drawer the night before so she felt she had some control/choice over what she wore.

The road to taking care of a loved one is not easy, no matter the circumstances. I compare it to taking care of a regressing 2 year old, there is no reasoning with them or a loved one in the throes of Dementia.

Have heart - we are all here for you and send you love, support and hope you realize you are an amazing person for supporting your family when they need you most.

Warmest wishes and prayers!
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EBE, it’s been a few days since the last activity in your post, please let us know if you all have accomplished anything.

Just another vote to do whatever it takes to get her to the doctor right away for a urinalysis and exam. After she’s treated for the likely UTI, an evaluation for a meds change.

The conditions you describe, to me, are fairly critical. Please be willing to upset your dad by insisting this all needs to be done, not asking. You can run her to one of those little clinics for a urinalysis *today.* Tell her the doctor needs to collect a tinkle test for all his patients who enjoy ice cream, I don’t think you have to be sensical.
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Dear EB,

I have a similar situation here.  I convinced my Dad to see someone and talk. Now that he has heard a professional say she needs other care and he is being verbally abused. He has been more open to finding her a nursing home (albeit , he is dragging his feet) it is progress.  It was put to him in a way he could justify. They told him it was better and safer for her as well.
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Seroquel is a strong medication,that does have strong side effects,and I am educated on its use,and it’s power.A small dosage can often be powerful..May I offer my thoughts as such,to follow,for consideration......Perhaps,A Gerentologist,as a medical Dr.to seek out,which currently are yes difficult to find,and locate.( Drs.are certified specialists in treating just the elderly,) Most large cities have a teaching hospital,and a medical school,which is a good place to start,to try to locate one..Even if the drive,is far,perhaps be open,just once to the trip.( and even if you go by yourself to see one and ask a ton of questions)Just like we see cardiologists for our hearts,dermatologists for skin issues,etc,these “ specialists” few and far between, I have found to be superior,when compared to the old tried and true,” just go see your primary care Dr”....all Drs.like counselors,educators,medical professionals,nurses,etc.are NOT created equal.I seek and try to search for the best,get 1st ,2nd,and 3rd opinions if needed,and am 200% open always to an ANP,in any medical field.I appreciate their time,and what appears to me,more understanding.Also I am aware older folks are not readily open to change Drs.Also does your state,or county,have an Office of Aging & Disability services,? Or Generational Office,etc,That may be useful,for some guidance,,for you and your current issue.Knowledge can be powerful,and the more we know,the more we learn.Ask questions,and do not laugh,but, like me,I now write down the answers,because I by nature,these days with brain overload, usually forget.Also write down ,& in one notebook,any and all questions you may have.Also in addition to seeking a gerentologist ,there are new blood tests out now,for anti depressants and the like,( in a newer category that measures “ if” a particular drug is compatible to ones blood type,DNA,how ones body will process it etc.; you can google,blood tests for depression “ as a start.)Again it is the next generation of prescribing,still in the development process,but it is available,from Drs.,APNP,APR,Drs.who are psychologists,etc.etc.I have some names here in NJ,but am not stating them in general,as I am unaware where you live,and do not want my knowledge to sound like an advertisement or endorsement).It does offer hope,and makes so much sense,as we all know,any medication is not a one size fits all approach!( the original studies on this began with a Dr.from Chicago,and Mass.General,and Harvard Med.have been at the forefront,of “ blood tests for depression,” & the like.)And no,insurance usually does not cover the tests,( not outrageous) but finding a Dr.or med.professional who is open to this style of treating patients,is the challenge.Those med.profess..are hard to find,but not impossible to locate.Any medical professional open to exploring and at the least listening to options I appreciate.Drs are tools and directors,but not always Gods.I have found in my family,and with mostly all the elderly,a resistance to another Drs.opinion,and also that they rarely question or challenge their Drs.,or dare may say,”I would like another opinion”...and so,seek and ask,and as their daughter you will learn,and not feel so alone and over whelmed.I am so sorry you are going thru all that you are,and understand your stress,and your job as a caretaker.It is you,who I am thinking about the most,and will.In closure perhaps consider some of the above suggestions,as even when I have been and am emotionally and physically depleted,and am tired of doing,seeing,hearing,living in family chaos,I am usually glad when I ask questions,and ask and ask,write down my answers,from a potpourri of med.professionals,counselors,etc.or this site,and now realize,I often keep those new educated revelations to myself...and that is because I have found when I share any new found knowledge,it is most often,instantly dismissed.( people in general are not readily open to change,&many fear change).You have courage.
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Sorry to say but 'WELCOME TO THE CLUB' - often things that were suppressed the most come out when the 'social stop' leaves - sometimes items that their mother's said were tabu like: don't go naked, don't talk about sex, turn a blind eye to X, we don't talk about those things, etc were dictates without explanation so have been suppressed all their lives for social reasons & now it's free rein to do so - if her mother was either very strict or repressive then you & your dad are reaping that crop

I had a great aunt who was so lady like she wore white gloves shopping with never a swear word but in her last weeks in hospital she swore enough to make a sailor blush - her family said she made up for 89 years & she said all the swear words that she suppressed in that time

This doesn't help much but occationally when mom would say things that happened when I was there I could say that it wasn't how I remembered & we would discuss things then she would drop it - asking 'when did this happen', 'who else was there', 'what did they do about it', 'why didn't you say something at the time' etc can stop these memories but only about 10% of time -

I call them 'chinese menu' memories with something from row A, something from row B etc that now come together as a new distorted memory [that can include data from movies or things others have told them] - some of the questions above may take them out of that loop otherwise it becomes a worse/larger story or at least stop it from mushrooming bigger

Your dad [& possibly you too] is in denial about her situation & needs to talk to a professional about it - when my mom first came into my care [after she wore out my dad then 89] then weeks later I made an appointment with a psycologist & she gave me insight into what her behaviour was & would become - I feel that session of one on one gave me a lot - I never felt guilty about some on the necessary things I had to do nor did I ever take what was happening personally - my only regret was that I didn't do it sooner as I would have proceeded slightly differently on past encounters but her guidance kept me from stewing about them too much
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The Alzheimer Society offers support groups for caregivers and family members. You and your Father would benefit greatly by attending. Others in similar situations will share with you how they are coping with problems you may be experiencing. Being a caregiver for a loved one with any form of dementia is one of the hardest things there is. You need a good support system or your own health will suffer from the stress of it all. Don't forget to take care of yourself!
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