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I really think that well established behavior patterns do not change even with Alz disease or dementia. I helped care for a gentleman and I mean gentleman who was ALWAYS very polite, and grateful. My Mother has always been argumentative to a certain extent and she still is! I know it is NOT easy, take care, J
I totally get it. The person I care for co-operates when in her daughter's care but not in mine. If it can be turned on and off at will with LONG TERM consistently and predictably and without ANY variances ..... how can it be dementia by definition?
amarillo - you've just posted answer #s 19 & 20. In #19, you've started with "l've asked (past tense) before ..." and ended with thanking everyone for their input. Yet you are not the original asker of this thread, nor were you a poster to any other of the 18 answers. I'm trying to figure out if you meant to post here and figure out if this was just a comment or did the AC system log this in the wrong place?? I'm sorry to be so confused.
I asked because she moans and groans and says she is going to pass out (when it's only me in the room), but as soon as someone else enters, her face brightens up 100% and she acts like a normal person that doesn't have dementia. YES this is really frustrating, and I am TRYING. Thanks everyone for your input...
Hi Jaye - you say your mom Nancy is 86 but you don't say what stage of dementia she's in. Each person's dementia is different. Kinda like what they say about pregnancies: each one is different, even your own. It's great, and sometimes a little easier, if you can still see the person inside that was your parent or whoever. A significant amount of us have been caregivers to people who, especially near the end, aren't who they were. They look at us and don't know us. We look at them and FEEL the same -- we don't know who they turned into -- the difference being that we KNOW what's wrong with them, they are just confused. That's the saddest part, that we can't really console them. For some confusion on our end, there's the range of moments of lucidity mixed in with sessions of complete derangement. Sometimes you can believe they're not sick at all, and others you know for sure they are. It's a devastating roller coaster. Personally, I was always wishing they would die peacefully in their sleep before they could get any worse. But that neither happened with the for family members I took care of nor 5 others, family members of friends, that I helped with. I hope you and your mom retain mutual recognition for as long as possible. It's definitely more comfortable.
I think that certain behavior patterns and personality traits do not change with Alzheimer's or dementia. My Mother has dementia she is VERY much the same person in many ways. She is still somewhat dramatic and can be VERY manipulative... take care...
My Dad with Alzheimer's often has more lucid moments when we wonder whether he really does have dementia! Yesterday I drove him and my Mom to a doctors appointment he had. On the way there he spoke from the back seat, asking questions. On the way home we made a quick stop at a grocery store; he and I stayed in the car while my Mom went in. He started complaining about the seat belt, said he had claustrophobia and wanted it off. As we drove home, he noted hail damage on roofs, told me to watch out for the sheriff's car in front of us (there really was one) and mentioned some other things we passed. He seemed almost 'normal' as we drove home. Yet as soon as we got to their home, he wanted to know what to do, couldn't understand when I repeatedly told him to go into the house as I drove the car into the garage, needed my Mom to help him undress 'right now', had to pee, etc. Was totally confused again. We know he has AD, but sometimes there are fluctuations in impairment that make a person with AD or other dementias seem almost like their old selves, which makes you wonder if the person IS manipulative. I don't believe anyone with AD can think well enough to consciously be manipulative. I DO believe that dementia can enhance personal characteristics that they've always had to make them more obvious; and that their personalities do change due to the problems in the brain. Some people's negative personalities are what they were before the disease, only 20 times worse! And some people take on characteristics we've never seen in them; perhaps they were repressed prior to the disease taking over. I can NOW look back at my Dad 10 or 15 years before diagnosis and realize that there were signs that something was going on; those small signals have done nothing but increase over the past 4 years since diagnosis. People do get worse, and maybe some are at a point where they CAN be manipulative; but I don't think they can consciously be that way as the disease progresses.
navel811 - My aunt had alcohol dementia. My mother told me that her little sister was always the spoiled baby of the family and that there was always a negative underbelly of her personality when she didn't get her way. That was magnified when she was diagnosed with dementia and she COULDN'T any longer have her way or her independence. It's like all the stops were taken out and she would do anything to get her way, even to the extent of being combative if all else failed. The neuropsychiatrist explained it thusly to me: when we're healthy, we all have an "ego curtain" that is dropped down in front of us to keep the "inner us" in line in terms of what we show to the outside world. This ego curtain generally prevents us from exhibiting truly ugly or obnoxious behavior. With dementia,, the ego curtain lifts to varying degrees and allows that inner self to easily come forth. So this is why the behavior of dementia patients is so varied.
It can appear to be deliberate or manipulation, and depending on their state at the moment, it could be. But ONE thing is for certain: THEY TRULY CAN'T HELP IT. Snd that's where our patience and understanding is invaluable as caregivers of dementia sufferers.
I get your point. This is my first day on this site and reading other posts has clarified to some degree my frustration. I was trying to get my point across without rambling and now realize without her background story and specific examples how I came to that conclusion has no support or the right information for anyone else to validate it or dispute it. I am frustrated because she still remembers family members, Dr.'s names, knows where she is, what town she's in, her past occupation, where it was, how long she worked there, her position and what it entailed,her birthdate, SS#, she doesn't rant or sundown or have outbursts, repeat things, wander, no paranoid delusions. I know the stages overlap but with a 50/50 choice she will pick the wrong one 100% of the time. Please, someone explain so I can understand the consistency issue of a 50/50 choice. I mean no dis- respect and am teachable.
My husband has dementia, probably AD and is in a nursing home. 4 months ago the disease suddenly (in 2 days) took a downward spiral - my jovial, talkative, intelligent husband could no longer carry on a conversation - his words often make no sense; he is incontinent, has difficulty swallowing food; sometimes refuses his meds if not redirected by a patient nurse, and is up many times at night. He gets confused but still knows me and my name, and usually recognizes old friends who visit but not their names. The doctors say he has declined a lot in the 4 months and to expect another change within 4-6 months. Is this realistic?
The asker of the original question should have clarified the variable of whether or not the person was this way (manipulative) BEFORE the disease. If it's so out of the patient's character to begin with (before) you know it's the disease (after). What about the one's who were controlling and manipulative before the onset? And now it seems they are using the disease as a reason to justify their behavior? I'm talking higher brain functioning here.... remembering consistently ONLY the wrong thing to do, consistently doing ONLY the very thing you have asked them not to do. When an opportunity to do the wrong thing in a situation doesn't come up for awhile and then does, NEVER accidentally making the RIGHT choice. I guess that's what it comes down to. It seems her intent is negative by choice because she NEVER "accidentally" gets it right. Consistency and intent. IF a patient with Alzheimer's is consistent in every way with the execution of getting it wrong, does it not imply that they can therefore be consistent in the other direction? And Yes, I'm talking about a person who was a mean, nasty and manipulative person before the disease. Those are the ones we have to talk about honestly and quit muddling up the discussion by grouping them in with the one's who were never like that before the disease. It warrants discussion and clarification.
It is hard. My mother says the same negative and hurtful stuff she used to say when I was growing up, but now is more often. If she gets upset, she knows how to use her brain to hurt with words or "small songs" I get upset and go to another room I can help to believe that those episodes are deliberate. According to the doctor, her Alzheimer is moderate.
My mom has dementia and is manipulative and controlling, but she was that way deliberatly for most of her life anyway. It just has made it worse now that she is in nursing home and trying to find ways to get out and talk me into taking her back and caring for her on my own again with no other family members. She comes up with a lot of hairbrian ideas now to try to get out.
Absolutely, I agree with rstkot, its NOT their fault. My sweetheart of a mom who couldnt kill and ant, turned into someone I didnt know. Its not their fault. As you said "mom would be shocked at herself the way she acts now" is what I say all the time too about my Mom too. She would accuse her grandchildren of taking things, say things about people negative, she never did that either. They are just so confused and scared and not themselves. I cant imagine treating or suspecting your mother is doing it on purpose, I hope no one ever thinks that of me if I ever should get it. Please treat her as she WAS and dont think its her fault. Its only going to get worse usually.
I neglected to mention in my earlier post that my mother was never a sarcastic or manipulative person before her alzheimers. Although she was always a pro at making you feel guilty if you didn't call her every day.......lol She be shocked herself at the way she acts now.
Remembering how my mom was before this disease, I cant believe she would do some of the things she does is she had control. She asks for something hot to drink, then compains that she is the only one without a soda. Give her a soda, then its you know I dont drink soda. Does the same with any beverage and food. For one I know she wouldn't waste anything and would've appreciated having anything to eat or drink. (she is 85, so has lived through hard times, many times)Try to remember how she was and you can at least convince yourself that her behavior is not deliberate. Just keep caring for her and loving her the way she did for you.Try to remember all the times you deliberately did something unappropriate and she was there for you. Smile, Laugh and keep on caring. Its what we do!
I've asked myself this same question about my mother who is in the later stages of alzheimers - not knowing who I am, talking to people who aren't really here, thinking she's a movie star (which makes for a lot of lighter moments....lol), but I've been amazed how she still has the "wherewithall" to be sarcastic and manipulative. On days when she refuses to eat or drink or take her meds and I'm trying to change her mind, she has actually said to me "Give me that water - I'll drink it." and then she puts her hand across her mouth and raises the glass as if she's drinking and I don't realize she isn't. Then she says, "There, I drank it" and she looks at me like I'm an idiot......lol
Oh, man, that's a big question, namely, "how much control does she have of her behavior"... which translates into some version of, "how mad do I get to be when she does crappy stuff".... which is born of the idea that "tolerating crappy behavior encourages it." If you look at it that way, it comes down to "how do I handle her behavior, myself, emotionally" and "what's a good way to respond to her behavior". Once you ask those questions you realize that getting mad adds to your own suffering and isn't particularly influential/helpful. And -- guess what? -- that's true whether your mom is doing it deliberately or not. So, with an Alzheimer's patient or anybody else, look after your inner state with as much detachment as you can; and find practical responses to practical problems as much as you can. If you find yourself thinking "But she's doing it on PURPOSE" then a useful next step might be to say "suppose she is, what can I do that's helpful; and suppose she isn't, what can I do that's helpful." Then do the stuff that shows up on both lists.... It's good practice in focusing on what actually does any good... no matter whom you're dealing with.....
I would say it depends on what stage their disease is in. However children learn early to manipulate if you think about it, so maybe they can. I think it also depends on how they lived their lifes when they were well. It is not easy I know but assume that they cannot and do the best you can, which I am sure you are doing... take care
My Mom has dementia and she has told me that she "just doesn't care anymore", when I have pointed out things like going out in your pjs and robe aren't appropriate.
I don't think they are deliberately manipulative. I believe even if they know they shouldn't do something they just can't really control it due to the damage to their brain.
Much would depend on her stage, but likely she is not deliberately acting that way. Her brain isn't functioning in a normal manner. She likely feels fear and perhaps gets depressed. Alzheimer's is very dificult, as you can imagine, to live with. My take is that this isn't deliberate, it's just the only way she knows how to act.
Another thing to remember is that people with AD tend to lose their inhibitions (that make us socially "polite."). Often they are "rude," but it's not intentional. They are just saying what crosses their minds.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
variances ..... how can it be dementia by definition?
It can appear to be deliberate or manipulation, and depending on their state at the moment, it could be. But ONE thing is for certain: THEY TRULY CAN'T HELP IT. Snd that's where our patience and understanding is invaluable as caregivers of dementia sufferers.
If it's so out of the patient's character to begin with (before) you know it's the disease (after). What about the one's who were controlling and manipulative before the onset? And now it seems they are using the disease as a reason to justify their behavior? I'm talking higher brain functioning here.... remembering consistently ONLY the wrong thing to do, consistently doing ONLY the very thing you have asked them not to do. When an opportunity to do the wrong thing in a situation doesn't come up for awhile and then does, NEVER accidentally making the RIGHT choice. I guess that's what it comes down to. It seems her intent is negative by choice because she NEVER "accidentally" gets it right. Consistency and intent. IF a patient with Alzheimer's is consistent in every way with the execution of getting it wrong, does it not imply that they can therefore be consistent in the other direction? And Yes, I'm talking about a person who was a mean, nasty and manipulative person before the disease. Those are the ones we have to talk about honestly and quit muddling up the discussion by grouping them in with the one's who were never like that before the disease. It warrants discussion and clarification.
I don't think they are deliberately manipulative. I believe even if they know they shouldn't do something they just can't really control it due to the damage to their brain.
Another thing to remember is that people with AD tend to lose their inhibitions (that make us socially "polite."). Often they are "rude," but it's not intentional. They are just saying what crosses their minds.
Take care,
Carol