The woman in the article had loving parents, so she was able to rationalize and understand the behavior. Wonderful parents are a rare gift, unfortunately. What do caregivers do when the person has a clear history of abusing relationships and is known to many for their toxic behavior? Did ya see the big elephant in the room, good people?😕
Dementia brings with it so many challenging behaviors, and once you feel like you've figured out how to manage one, another one arrives in its place! I think the key, rather than trying to figure out if manipulation is going on or not, is to ensure the person has the highest possible quality of life based on his or her particular challenges and ability level.
Read this article because my FIL, who has mild dementia, seems to be trying to manipulate my husband's feelings and I needed to try to understand what's happening. In my opinion, this article glosses over the fact that people with dementia had personalities before the dementia.
Before dementia, my FIL was tightly wound and needy but he had my MIL and so she dealt with his personality quirks. When MIL got sick, FIL became severely depressed and anxious and fell apart. Now that MIL is dead, FIL has learned helplessness and noncompliant with his antidepressants and antianxiety meds. He complains about everything and reserves his negativity for my husband and me.
At yesterday's visit, FIL threw a new pity party for himself. It's the "your wife blames me for everything" pity party. It does NOT come as a surprise to me because I have seen that side of my FIL before i.e. before the dementia. But my husband is upset, and I don't know what to do about it. My FIL seems to want someone to act toward him as did MIL but that's not possible. So now what?
Dementia can seem like regression into childhood, just like advanced age can. It can feel like you are tending a small child - mood swings, temper tantrums, self-pity, need for attention, etc. - all from a creature who wants to be the boss.
Dementia Behavior Can Seem Like Manipulation Yes. The behavior in a person who you think has dementia can seem like manipulation. Experts in the medical and psychological fields say that it is not. And they are right. Manipulation cannot be present in a person diagnosed with dementia. So, then what was going on with my mother? A neurologist that was finally seeing my mom at the age of 93, told me that my mother did not have dementia. But she “…only has brain shrinkage that is appropriate for her age.” What? That sounded like a brush-off to me. I was really frustrated. No dementia. But something else that I didn’t understand, and the doctor did not take the time to explain to me. But maybe there was nothing else the doctor could have explained to me. I tried for months to figure it out. My best response in the days following that comment from the doctor was to just ignore my mother when she seemed manipulative, and vent like crazy in the car on my way home from my visits with her. Yes, some would say to lessen my visits if it’s that bad; that I had to think of my own health and mental wellness. But, she was my mom. I loved her dearly. And she and I were the only ones left in our immediate family. Everyone else had passed away years before. About two years after the neurologist had made that comment to me I found what I had been looking for: what was making my mom into such a different person from the woman I knew as “Mom” during my growing up years, and in my earlier adult years? As I grew from birth through the age of 66, my mother was a down to earth kind of person. Everything in her mind was done with full intention, without knee-jerk or sudden reactions. Every thought and action required her well determined planning and purpose, and it was always for the good and betterment of all involved. My mother never got angry at me as I grew up, and never showed outright anger to anyone. For disciplinary purposes she would “ground” me to the house for a few days or maybe a whole week or month if the offense was extremely awful. That only happened once when I told her I was going to a movie with a girlfriend but met up with a blind date arranged by my girlfriend. I had been grounded from dating. My mother always found out, no matter how hard I tried to fool her. She could not be fooled. And it was all to my best interest. I learned this lesson: no matter what, do not lie to anyone, because it will always be uncovered; and even if it isn’t, the lie inside of me would eat me up into a hollow, bitter person. All those years, 66 of them, everything seemed well between my mother and me. Then things changed. When my father passed away in 2007 (I was 62 – my mother was a heathy 86) my mom was managing her life and her home at excellent levels of care. In 2010 my older sister died of multiple kinds of cancer. Then in 2011 (66-90) my mom was diagnosed with breast cancer and had a mastectomy. She seemed to recover completely. However, she wanted me to move in with her for the months she was to recover. I did. During that time, she began to yell at me in public for silly things – trying to give her the receipt after a purchase. She would give me the money to make the purchase, and then I would give her the change and the receipt, but she insisted I was embarrassing her in public. She would yell at me while I was driving from one place to another with silly things. Like, I was going too slow. Or I should not have waved on the pedestrian to walk across the crosswalk. The food I cooked lacked whatever it was that she wanted. And on and on it went. This was so upsetting to me. I even loaded the dishwasher wrong. My mom was never a candidate for complaining or yelling before. But now, it was all she could do. I am aware that surgeries, past the age of 60 can cause unpleasant side-effects. And I am aware that the deaths of my father and sister weighed on my mom heavily. My mother did take advantage of the free monthly counseling available in her area after the passing of my father. That was a great help to her, and they reminded her that they would always be there when she needed them again. They continued to check in on her, and I was grateful for that. But, this newer behavior change wasn’t really making any sense. My cousin and I were researching the internet to find the answers. But came up short every time. My uncle, my mother’s brother, was displaying the exact, identical symptoms as my mom. What could it be? Each time my mother stayed with me in my home, before she was in assisted living, I could see that she would deliberately dig the wheels of her walker hard into the carpet. It made a little ripple in the carpet. I decided not to make an issue of it even though we had only had this new carpet for one year. To this day, 4 years later, there are two ripples in our carpet that are there for all time because of my mother’s intentional decision to dig her walker into the carpet. But was she just trying to get back at me because she was mad at me for making her move? Was she being manipulative? That is what it looked like to me. As I waited for her to complete the walk into the dining room from the long hallway, she would pause at my side, look up at me with that cute little childlike tilt of her head and grin a big grin. Then she would be on her way again, digging up more carpet. Just a bit passive-aggressive, I think. A few months before my uncle passed away, I decided to research “brain shrinkage” on the internet. I had never even thought to do that before because the doctor’s comment about it to me sounded like so much balderdash. As I said before, like a real brush-off. To my amazement, “brain shrinkage appropriate for the age” is an actual medical diagnosis. Unbelievable! At that point in time, I did not realize that I would only have a little over one year left to enjoy my mother. She eventually passed away in November, 2017. But, I discovered what she was up against in this brain shrinkage problem of hers. I learned that as we grow from infancy, our brains grow along in the equal needs of our chronology. As we get larger/taller, our brains grow larger/bigger. There is an approximate size for a 5-year-old and for a 10-year-old, etc. Eventually our bodies stop growing and our brains stop growing in size. So, what is brain shrinkage? As we age, sometimes our brains begin to reduce in size – the brain slowly shrinks. I am not sure why this happens to some people. But, as I learned in my research, our brains can shrink in size back to the size it was when we were 12; then 10; then 5; and even back to the age of a 3-year-old. In this kind of change for an older person, since it is not a case of dementia, the memory areas of the brain are not destroyed or lessened. And the intelligence areas of the brain are not affected. What this older person is left with is a mind that is sharp and clear, and with the intellect that they had when they were 40 or 50. And they have the memory of an elephant, if that was the case when they were younger. Now we have learned that brain shrinkage of the elderly means that the intellect capacity that was normal for them prior remains intact. And the memory capacity that was normal for them prior remains intact. What does not stay intact in brain shrinkage are the cognitive abilities. The person’s capacity to make good decisions involving personal safety, relationship decisions, financial changes, etc. is diminished commensurate with the size of the brain. The way to look at it is to try to assign the elder’s behavior with that of a much younger aged child. Example: My mom would never want to lock her front door so that all of her friends could just come in at will without the bother of knocking first and being allowed into the house. Her reasoning was that “…everyone in my town is nice. There are no bad people that live in my town. So, I can feel safe with my front door unlocked all the time.” Young children must be taught this principle of safety, even in our own homes. It does not come naturally. Maybe it is a 5 -year-old who needs to be taught this safety rule. During the door argument season, my mom’s brain was probably the size of a 5-year-old. As I began to look at her situation in this way, it did make it easier. What made it more difficult was that her verbal skills were that of a 50+ healthy woman. It was just her reasoning that was off. So, her judgments were not consistent with her intellect or her ability to recall information. Another example of the brain shrinkage were the relationships that she continuously kept. When I wrote on this website a few years ago about my mom’s inconsistencies I got railed upon (criticized, kicked, attacked and denounced) by every comment. It was not nice or helpful. This is the first time since then that I have left a comment. The comments from before indicated that I needed to feel blessed instead of frustrated that at the age of 90+ my mother still had friends to meet with, even if they were in their 40’s-50’s. The point here is that these people were what I call “elder vultures”. They wanted whatever they could eventually get from my mother: her house, her money, her jewelry; and in the moment: free lunches, etc. i.e. The man (my age of 66 at the beginning of all of this) next door would hug and hang on my mom like she was his long, lost wife. It was really embarrassing as his own wife looked on. He used his house next door as a vacation house for he and his wife. But, they always showed up at the exact time that I would bring my mother back to visit her home. I never could figure out why at the time. I later learned that he kept in constant phone contact with my mom. She had her cell phone glued to the inside of her pants pocket. And no one was allowed to ever handle it. Private territory. Like a little kid with his favorite new toy. After the passing of my mom I learned that this man was a realtor (through an internet search) and had a realty company which owned several vacation homes in my mother’s area. The house next to my mother’s house was not this man’s personal vacation home like he always indicated. It was one of a string of rentals that he owned. My observation now is that he hoped to be in a pristine place to jump on the real estate band wagon as soon as or before my mother’s house went up for sale after her passing. I believe that he wanted my mother’s house because it was next door to one he already owned, making a nice marketing offer to someone looking for extra rental space for a larger group. To his surprise, our family always intended to keep the house for our own vacations, and eventually a retirement home for my husband and me. We haven’t seen or heard from the neighbor since. The issue with this house example is that our whole family felt that something was wrong with the elaborate show of attention from this man toward my mom. It was equally as clear to all of us that my mom could not see it. She didn’t have the capacity to see it. Her brain size did not allow her to make that choice. It wasn’t until after my father died that the neighbor would come over and sit in my mother’s living room and they would talk so intelligently in utter detail (no memory problem) about the common places that they had both traveled to all over the world. And, yes, that was nice. But to have to step in and be so watchful to make sure that no advantage was ever taken was exhausting. Would he have done it if allowed? Yes. Would my mother have been able to stop it before it was too late? No. Another “friend’ situation was with a woman who had been a family friend through one of my mother’s school friends. This woman was in her 50’s and was a real estate agent – the $1,000,000.00 Club! After my father died she began a similar show of attention as the neighbor. She insisted on birthday dinners, wine, etc. And she always insisted on bringing the birthday cake/cupcakes – homemade of course. And, where was I? For a while I enjoyed the fact that someone else was doing these things for my mother. But then I got suspicious. My mother told me that she had gotten a phone call from the family friend while she was preparing to move to assisted living. My mother suddenly informed me that she wanted to reconsider the decision to keep her house. She was now thinking that selling the house was a better option. Why? Because Sally said so. Also, Sally told my mother that she would come over to my mother’s house and tell her which objects my mother could take to the assisted living place, which ones to give to the family, which objects she could sell in a garage sale and which ones she could donate. “You have got to be kidding me??!!” and that is putting it mildly. As a last resort, on the advice of my mother's lawyer, I wrote a letter to the woman and asked if she would keep her wonderful relationship with my mother on a family friendship basis, and to please leave business out of it. Since my mother’s passing, I have not heard from Sally either. This issue of the brain shrinkage is what caused my mother to no longer be able to live alone. It was no longer safe. Besides leaving her front door unlocked all the time, she was allowing others to come and spend the night whenever they wanted, and she had allowed a couple to take care of serious medical needs without the family’s knowledge. Her mastectomy was the result of following this couple’s advice about a lump in her breast in place of getting to the doctor right away. She waited too long for medical intervention and eventually a mastectomy was the only option since the tumor had finally begun to exit her breast. The journey into assisted living was excruciatingly painful for both of us. But we adjusted as well as we both could. The 4 years that I was so very involved in her care exposed many instances where I could see that she was manipulating me. And when everyone said that people with dementia cannot manipulate, I knew that there had to be something else, or everyone else was wrong. If you think your loved one has dementia, but you see signs of manipulation, consider brain shrinkage. I have learned that older people who might appear as though they have dementia, CAN manipulate the other people around them. But instead of dementia, their issue is “brain shrinkage commensurate with their age.” Look it up. I am glad that I did.
I have similar situation with my wife, for every real life situation she interprets wrongly and starts shouting and arguing constantly, if I give explanation she does not want to listen but she picks up unfinished explanations and make her own interpretation but it always in negative way. she has been this way ever since I married her, she was 24 then but now she is 36. its very hard to focus on further career growth and kids activity...I am going into depression state sometimes because of unbearable taunting ?
does dementia happen to such a young age people? oh Ya forgot to mention, she is 100% manipulative and tells complete wrong story to her won family.
I caregive part time for my parents who both suffer with dementia. I work a full time job as well. In the past year my dad has run off 3 caregivers. I am at my wits end. I know it’s the disease, but why do I feel like he’s doing that on purpose so I will have no choice but to become their full time caregiver.
Why does a dementia patient be nice to family members and as soon as they leave have a superior and sometimes agitation behaviors toward the caregiver.
I see the current moments of others and have lived caring for an extremely manipulative family member who has developed dementia and been diagnosed with a borderline personality disorder. I think the BPD and dementia go hand in hand. As a nurse, working with the elderly and those with dementia for the majority of my 45 years nursing, this has been seen as an all too common occurrence - BPD and dementia. People with BPD are master manipulators or string pullers.
My mom is in a assisted living facility every time we pick her up she says nobody likes her that everyone that works there is against her there all talking about her. When she's the one that's aggressive to everyone there it drives us crazy what can we do. We ask every time she says it and they don't know what she's talking about.
My mother is 90 and Im positive she has dementia. She has not been diagnosed but she has been blaming me of theft and other terrible accusations for about three years now. We have never had a really great relationship though. She has always been so critical of me. I asked her a few years ago if she could say anything good about me. She thought for a few seconds and said: you dress well and you go to work every day. That was all she could possibly say about her daughter that has so many other qualities that others have always complimented me for. Anyway, the dementia is bad but no one else notices because she's just "a peach" to everyone else. She has become extremely hurtful to the point of telling me she hopes she dies so I can feel awful for the rest of my life. Im an only child and this situation has my blood pressure soaring almost daily.
Thank you, sunnygirl1. Yes, the loss of a child is like no other in its pain.
2 of my 3 brothers understand that I will not put up with unlimited demands by our mother (the other one wouldn't care and just about never comes to see his mother). One brother was going to make a special trip here to look at Assisted Living facilities, but that never panned out. Mom has announced she won't be willing to look at any AL places "for at least two years."
I am so glad that there is someone else here who believes that adult children are not bound to provide care in the home for elders. I have also told my brothers that our mother is not coming to live with me. (It helps that she clearly told me that she didn't want to live with me several years ago.) I stayed with her for 8 days and nights 1.5 years ago when she somehow hurt her back and she was nearly helpless. That time with her was unbearable, as she ordered me around. Yet now she says I did NOT do that -- that at the most I was with her for 2 days, and that she could have stayed by herself. Ummm...NO. She was prescribed powerful painkillers and was not to be left alone, according to the dr. My brothers knew full well what I did for her, as I informed them. I will not be doing THAT again.
I promised my dad as he was dying that we would take of her. That was 5.5 years ago (just months before my son died). I'm trying to work out with myself just exactly what that means. But I know it doesn't mean I am to sacrifice my own mental and physical health (particularly mental health).
Cttn55, I'm so sorry for the loss of your son. That must be incredibly painful. I can't imagine such pain.
It it good that your mom has long term care insurance coverage. Have you discussed your concerns with your siblings. It sounds like they aren't aware what you are dealing with. Would it help to give them the heads up, so they know what you will not be doing?
I'm of the opinion that adult children are not bound to provide care in the home for parents. I don't think it's selfish, but realistic and practical. That's just me. I would not want my adult children caring for me and not living their own lives. Others have a different view on this.
I think that dementia patients offer particularly harsh challenges for most family members caring in the home. That's why we need a lot of help. I took solace in that fact when placing my loved one into Memory Care.
"...I think it's so important to have a very long fuse and be of a very special temperament who can tolerate a lot."
And that is the gist of why I am NOT looking forward to increased caregiving responsibilities for my mother, which was starting to happen (until she got mad at me and now hardly calls at all -- not complaining! but it will end when she stops driving and I have to be her taxi service).
I do not want to be her caregiver, but as the only local sibling (and the only daughter), I am expected to be the one. It is what she expects. When I mentioned the dirty "c" word (compensation), she got furious. She thinks I am trying to take advantage of her. Short-term memory lapses aside, she doesn't forget THAT!
I do not have the patience to deal with her controlling ways. I have never had a good relationship with her. I love her, but do not like her. I resent that my 3 brothers are all out of state. When the demands on my time increase, I will expect compensation, as that is the only way I can do this (we could use the money).
I have had enough to deal with in my life by losing my young adult son 5 years ago suddenly and unexpectedly. I will NOT give up my life and health (as so often seems to happen) to be the Daughter-Slave to my mother. She has excellent LTC insurance, and once she qualifies I will expect her to use it. I don't even want to hire/supervise the in-home help, if she ever agrees to even that.
I have informed my brothers that I will just walk away if things get to be too much for me and there is not adequate compensation.
When the dementia patient's behavior progresses to the point that they are a disruption in public, then I would consider if public outings should be continued. Or perhaps go to smaller places at hours when they are less busy and the less likely that Sundowning is taking place. I'd try to get out during the morning and return home by the afternoon, when behavior can take a turn for the worse.
Although, there is a lot of frustration, hurt and resentment about how a dementia patient treats their caregivers, it's not much that can be done, except, the standard, medications, redirecting, distraction, etc. The patient can't learn anything new, so you aren't likely to teach them a lesson. And even if you did, they would forget it in short time. That's why I think it's so important to have a very long fuse and be of a very special temperament who can tolerate a lot. Some people don't do well in residential environments due to aggression and resistance. There are places who do a wonderful job and they are also an option. (Memory Care.)
LadyBelle's comment is exactly what bothers me, too.
"But I still struggle with why anyone trying to help someone should have to put up with bad behavior at all. ...dementia, personality disorder or not. And what I've noticed is that the dementia sufferer always targets the person who cares for them...they rarely lash out at a stranger."
I was out with my mom and her husband tonight for dinner and my mom acted like a out of control child. She pulled a few of my hair's out of my head just for the fun of it and many weird embarrasing things the entire night that i needed to ask for the check. I have never seen this as bad as tonight and could not control it or she would get upset and argure. How fast can she go down hill from here? What can i do to stop this?
I think this is a great article. Very important information.
From what I have read over the last couple of years, it is extremely difficult for us as loved ones and caregivers to really step back and not see the dementia behavior as manipulative, mean, ill spirited, selfish, controlling, etc. No matter how hard we try, I think that some just can't let go of that.
Apparently, many families have long standing issues where there was a lot of dysfunction. Often due to the fault of the person who now has dementia. I suspect that the loved ones just can't bare letting the dementia patient off the hook, so to speak. Still, I think that medical information confirms that not recognizing the limitations of the dementia brain, is not helpful and only a fantasy for those that insist it can happen.
One of those asking about what happens then....I think that we just have to protect the dementia patient loved one and keep them from harm as best we can. They cannot be held responsible. We can't place expectations or demands on them. It's a waste of time and will likely be met with disappointments. We can't expect the dementia patient to use good judgment, make the right choices, show respect and appreciation, act nice or give us love. We must do that for them with no expectations of them in return. We can't lose sight of what is really happening and not take it personally.
I wanted to ad this: I do understand the issue of being angry at the disease and not at the person. I also understand the rest of the advise: which says, "Set a goal to maximize and enjoy the time you have with them." My frustration with this issue is that, "Then what?!" When other people come into the mix one must stay observant and vigilant. But, I still want to know, "And then what?!" I don't think I can just say to myself, "Remember, be mad at the disease and not at mom, and set some goals to be sure and enjoy the time I have left with her. LOL" It is still, "And then what?!" Sure, that comment is a good one. But the responsibility cannot stop there. Other things must be taken into account and must be acted upon. That is what I was asking in my previous post.
It is really hard to just "...blame the disease and not the person. Set a goal to maximize and enjoy the time you have with them." when I can see that my (95) mother (who lives in AL) is in the process of shifting her loyalty to a woman who comes in from the outside to "help" (dressing, etc.) her older friend (another resident of the same AL) throughout the day. The woman has befriended my mother, giving her gifts for any reason, and treating her like a peer instead of a resident of an AL; not keeping a professional distance, probably because she is just a friend and not a professional - or it is intentional for a motive of some sort. In the midst of my mother's shifting toward this person, my mother is systematically shifting her loyalty away from me (daughter-71) and the rest of the family. This is not a matter of jealousy. It is a symptom of a real, mental condition, although I do not know if it has a name. I know of other situations where, over time, the elderly shift their all of their loyalty toward someone else, and in the end, the elderly then flatly reject family members from even visiting or calling on the phone. I believed that having my mother live in an AL would help prevent this situation from happening because there would be recourse through the administrative staff if any of the employees were to take advantage of this elder-related phenomena. But when it is coming from someone who is not employed by the AL, there is no one to create any accountability. I have spoken with the AL director and she said she would "monitor" the gift-giving. But it continues - jewelry, candy, etc. The most recent is making bone-broth at home and bringing it to my mother. I used to think that my mother was mad at me for making phone calls, and other things, etc. So I thought I would limit the phone calls to only giving her information about any changes in her many doctor appointments. Now I realize that she really isn't mad at me. But I am concerned that the "anger" she displays is a part of the "rejection" that is necessary in order to complete the process of shifting her loyalty to someone else. I am not meaning that my mother is mentally aware of this process. I do not believe she is doing it on purpose, with intention. But I am concerned that the process is taking place because of the level of dementia she has. What to do?
But...what about the elder mother who (shows other signs of dementia) says she doesn't want to cook anymore, so she tells her son and daughter-in-law that they can hold Thanksgiving dinner and that she will pay for it all - then a few days later tells the son and d-in-l that they can invite anyone else they wish besides family (i.e. friends who have no where to go on the holiday) - then a few days later wants to know if she can bring a friend and her young child (a person who the family thinks is manipulating the elder mother out of finances, etc.). It looks as though the elder mother set up the whole scenario about thanksgiving dinner and telling the son to invite whoever else to the dinner just so the elder mother could justify inviting someone she knows the family doesn't trust and get away with it. The mother clearly has dementia in other areas, but does this kind of "manipulation" as well. how is this example not manipulation?
I was going to post the same thing Dazednconfused said, What if the parent has always been manipulative and abusive and just getting worse with age? My mother has been manipulative, gaslighting, underhanded, lying, hurtful, all my life. So I can't say she's just behaving like that because she's elderly and has dementia. She's never been tested for dementia, so who knows what's going on. I don't respond to her constant complaints and merry-go-round of illogical excuses anymore. (But again, she's always done that.)
My older Mom has been told by doctor she has hyperthyroidism (which is causing a lot of anxiety and 'thinking insanity' my words) but she is so darn stubborn she WILL NOT take the 2 simple pills a day, but instead talks and acts like her whole life is over. When it's treatable hyperthyroidism? Now what?
My mother hates having railing on her bed too. I did it once though because I found her during the night holding on to her wheelchair and her head was resting between the bed and the wheelchair facing downward and she was on the very very edge of the bed. That part of the wheelchair is not safe for her face and I was afraid she would get really hurt, especially if she fell out of bed. I used a toddler rail with netting on it so it was more airy, but still prevented the problem. She fought me about it, but I held fast and she adapted to it and finally stopped complaining about it. But the railing was a bit too long and it put her too far down on the bed and she always had to scoot up toward the pillow after getting into bed. So when I found something to work, I replaced the railing with furniture, making sure there were absolutely no sharp edges or corners. This also gives her more to hold on to and lean on when she gets in and out of bed. She still feels a bit cramped, but she deals with it.
Great article; As a seventy five year old woman w/ two post-grad degrees, I am aware of what's going on with my dementia; the disease is especially troubling . I smell foot odor, yet my caregiver says she doesn't smell anything. I don't know what to believe, i've always had a more acute sense of smell and and hearing -people say they hear what I can hear only after it becomes louder. I don't believe I'm paranoid, yet. I don't know how to get accurate, non-patronizing feedback from those around me before I do start getting 'paranoid'. What do I do? I smell foot odor` from my carpet (where I sit barefoot in front of the computer), and sometimes in closed spaces - my friend's car. Any suggestions before I actually become paranoid?
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Dementia Behavior Can Seem Like Manipulation
What do caregivers do when the person has a clear history of abusing relationships and is known to many for their toxic behavior?
Did ya see the big elephant in the room, good people?😕
Before dementia, my FIL was tightly wound and needy but he had my MIL and so she dealt with his personality quirks. When MIL got sick, FIL became severely depressed and anxious and fell apart. Now that MIL is dead, FIL has learned helplessness and noncompliant with his antidepressants and antianxiety meds. He complains about everything and reserves his negativity for my husband and me.
At yesterday's visit, FIL threw a new pity party for himself. It's the "your wife blames me for everything" pity party. It does NOT come as a surprise to me because I have seen that side of my FIL before i.e. before the dementia. But my husband is upset, and I don't know what to do about it. My FIL seems to want someone to act toward him as did MIL but that's not possible. So now what?
Yes. The behavior in a person who you think has dementia can seem like manipulation. Experts in the medical and psychological fields say that it is not. And they are right. Manipulation cannot be present in a person diagnosed with dementia.
So, then what was going on with my mother?
A neurologist that was finally seeing my mom at the age of 93, told me that my mother did not have dementia. But she “…only has brain shrinkage that is appropriate for her age.”
What? That sounded like a brush-off to me. I was really frustrated. No dementia. But something else that I didn’t understand, and the doctor did not take the time to explain to me. But maybe there was nothing else the doctor could have explained to me. I tried for months to figure it out. My best response in the days following that comment from the doctor was to just ignore my mother when she seemed manipulative, and vent like crazy in the car on my way home from my visits with her.
Yes, some would say to lessen my visits if it’s that bad; that I had to think of my own health and mental wellness. But, she was my mom. I loved her dearly. And she and I were the only ones left in our immediate family. Everyone else had passed away years before.
About two years after the neurologist had made that comment to me I found what I had been looking for: what was making my mom into such a different person from the woman I knew as “Mom” during my growing up years, and in my earlier adult years?
As I grew from birth through the age of 66, my mother was a down to earth kind of person. Everything in her mind was done with full intention, without knee-jerk or sudden reactions. Every thought and action required her well determined planning and purpose, and it was always for the good and betterment of all involved.
My mother never got angry at me as I grew up, and never showed outright anger to anyone. For disciplinary purposes she would “ground” me to the house for a few days or maybe a whole week or month if the offense was extremely awful. That only happened once when I told her I was going to a movie with a girlfriend but met up with a blind date arranged by my girlfriend. I had been grounded from dating. My mother always found out, no matter how hard I tried to fool her. She could not be fooled. And it was all to my best interest. I learned this lesson: no matter what, do not lie to anyone, because it will always be uncovered; and even if it isn’t, the lie inside of me would eat me up into a hollow, bitter person.
All those years, 66 of them, everything seemed well between my mother and me. Then things changed. When my father passed away in 2007 (I was 62 – my mother was a heathy 86) my mom was managing her life and her home at excellent levels of care. In 2010 my older sister died of multiple kinds of cancer. Then in 2011 (66-90) my mom was diagnosed with breast cancer and had a mastectomy. She seemed to recover completely. However, she wanted me to move in with her for the months she was to recover. I did. During that time, she began to yell at me in public for silly things – trying to give her the receipt after a purchase. She would give me the money to make the purchase, and then I would give her the change and the receipt, but she insisted I was embarrassing her in public. She would yell at me while I was driving from one place to another with silly things. Like, I was going too slow. Or I should not have waved on the pedestrian to walk across the crosswalk. The food I cooked lacked whatever it was that she wanted. And on and on it went. This was so upsetting to me. I even loaded the dishwasher wrong. My mom was never a candidate for complaining or yelling before. But now, it was all she could do.
I am aware that surgeries, past the age of 60 can cause unpleasant side-effects. And I am aware that the deaths of my father and sister weighed on my mom heavily. My mother did take advantage of the free monthly counseling available in her area after the passing of my father. That was a great help to her, and they reminded her that they would always be there when she needed them again. They continued to check in on her, and I was grateful for that.
But, this newer behavior change wasn’t really making any sense. My cousin and I were researching the internet to find the answers. But came up short every time. My uncle, my mother’s brother, was displaying the exact, identical symptoms as my mom. What could it be?
Each time my mother stayed with me in my home, before she was in assisted living, I could see that she would deliberately dig the wheels of her walker hard into the carpet. It made a little ripple in the carpet. I decided not to make an issue of it even though we had only had this new carpet for one year. To this day, 4 years later, there are two ripples in our carpet that are there for all time because of my mother’s intentional decision to dig her walker into the carpet. But was she just trying to get back at me because she was mad at me for making her move? Was she being manipulative? That is what it looked like to me. As I waited for her to complete the walk into the dining room from the long hallway, she would pause at my side, look up at me with that cute little childlike tilt of her head and grin a big grin. Then she would be on her way again, digging up more carpet. Just a bit passive-aggressive, I think.
A few months before my uncle passed away, I decided to research “brain shrinkage” on the internet. I had never even thought to do that before because the doctor’s comment about it to me sounded like so much balderdash. As I said before, like a real brush-off.
To my amazement, “brain shrinkage appropriate for the age” is an actual medical diagnosis. Unbelievable! At that point in time, I did not realize that I would only have a little over one year left to enjoy my mother. She eventually passed away in November, 2017. But, I discovered what she was up against in this brain shrinkage problem of hers.
I learned that as we grow from infancy, our brains grow along in the equal needs of our chronology. As we get larger/taller, our brains grow larger/bigger. There is an approximate size for a 5-year-old and for a 10-year-old, etc. Eventually our bodies stop growing and our brains stop growing in size.
So, what is brain shrinkage? As we age, sometimes our brains begin to reduce in size – the brain slowly shrinks. I am not sure why this happens to some people. But, as I learned in my research, our brains can shrink in size back to the size it was when we were 12; then 10; then 5; and even back to the age of a 3-year-old. In this kind of change for an older person, since it is not a case of dementia, the memory areas of the brain are not destroyed or lessened. And the intelligence areas of the brain are not affected.
What this older person is left with is a mind that is sharp and clear, and with the intellect that they had when they were 40 or 50. And they have the memory of an elephant, if that was the case when they were younger. Now we have learned that brain shrinkage of the elderly means that the intellect capacity that was normal for them prior remains intact. And the memory capacity that was normal for them prior remains intact.
What does not stay intact in brain shrinkage are the cognitive abilities. The person’s capacity to make good decisions involving personal safety, relationship decisions, financial changes, etc. is diminished commensurate with the size of the brain.
The way to look at it is to try to assign the elder’s behavior with that of a much younger aged child. Example: My mom would never want to lock her front door so that all of her friends could just come in at will without the bother of knocking first and being allowed into the house. Her reasoning was that “…everyone in my town is nice. There are no bad people that live in my town. So, I can feel safe with my front door unlocked all the time.” Young children must be taught this principle of safety, even in our own homes. It does not come naturally. Maybe it is a 5 -year-old who needs to be taught this safety rule. During the door argument season, my mom’s brain was probably the size of a 5-year-old. As I began to look at her situation in this way, it did make it easier. What made it more difficult was that her verbal skills were that of a 50+ healthy woman. It was just her reasoning that was off. So, her judgments were not consistent with her intellect or her ability to recall information.
Another example of the brain shrinkage were the relationships that she continuously kept. When I wrote on this website a few years ago about my mom’s inconsistencies I got railed upon (criticized, kicked, attacked and denounced) by every comment. It was not nice or helpful. This is the first time since then that I have left a comment.
The comments from before indicated that I needed to feel blessed instead of frustrated that at the age of 90+ my mother still had friends to meet with, even if they were in their 40’s-50’s. The point here is that these people were what I call “elder vultures”. They wanted whatever they could eventually get from my mother: her house, her money, her jewelry; and in the moment: free lunches, etc. i.e. The man (my age of 66 at the beginning of all of this) next door would hug and hang on my mom like she was his long, lost wife. It was really embarrassing as his own wife looked on. He used his house next door as a vacation house for he and his wife. But, they always showed up at the exact time that I would bring my mother back to visit her home. I never could figure out why at the time. I later learned that he kept in constant phone contact with my mom. She had her cell phone glued to the inside of her pants pocket. And no one was allowed to ever handle it. Private territory. Like a little kid with his favorite new toy.
After the passing of my mom I learned that this man was a realtor (through an internet search) and had a realty company which owned several vacation homes in my mother’s area. The house next to my mother’s house was not this man’s personal vacation home like he always indicated. It was one of a string of rentals that he owned. My observation now is that he hoped to be in a pristine place to jump on the real estate band wagon as soon as or before my mother’s house went up for sale after her passing. I believe that he wanted my mother’s house because it was next door to one he already owned, making a nice marketing offer to someone looking for extra rental space for a larger group. To his surprise, our family always intended to keep the house for our own vacations, and eventually a retirement home for my husband and me. We haven’t seen or heard from the neighbor since.
The issue with this house example is that our whole family felt that something was wrong with the elaborate show of attention from this man toward my mom. It was equally as clear to all of us that my mom could not see it. She didn’t have the capacity to see it. Her brain size did not allow her to make that choice. It wasn’t until after my father died that the neighbor would come over and sit in my mother’s living room and they would talk so intelligently in utter detail (no memory problem) about the common places that they had both traveled to all over the world. And, yes, that was nice. But to have to step in and be so watchful to make sure that no advantage was ever taken was exhausting. Would he have done it if allowed? Yes. Would my mother have been able to stop it before it was too late? No.
Another “friend’ situation was with a woman who had been a family friend through one of my mother’s school friends. This woman was in her 50’s and was a real estate agent – the $1,000,000.00 Club! After my father died she began a similar show of attention as the neighbor. She insisted on birthday dinners, wine, etc. And she always insisted on bringing the birthday cake/cupcakes – homemade of course. And, where was I? For a while I enjoyed the fact that someone else was doing these things for my mother. But then I got suspicious.
My mother told me that she had gotten a phone call from the family friend while she was preparing to move to assisted living. My mother suddenly informed me that she wanted to reconsider the decision to keep her house. She was now thinking that selling the house was a better option. Why? Because Sally said so. Also, Sally told my mother that she would come over to my mother’s house and tell her which objects my mother could take to the assisted living place, which ones to give to the family, which objects she could sell in a garage sale and which ones she could donate. “You have got to be kidding me??!!” and that is putting it mildly. As a last resort, on the advice of my mother's lawyer, I wrote a letter to the woman and asked if she would keep her wonderful relationship with my mother on a family friendship basis, and to please leave business out of it. Since my mother’s passing, I have not heard from Sally either.
This issue of the brain shrinkage is what caused my mother to no longer be able to live alone. It was no longer safe. Besides leaving her front door unlocked all the time, she was allowing others to come and spend the night whenever they wanted, and she had allowed a couple to take care of serious medical needs without the family’s knowledge. Her mastectomy was the result of following this couple’s advice about a lump in her breast in place of getting to the doctor right away. She waited too long for medical intervention and eventually a mastectomy was the only option since the tumor had finally begun to exit her breast.
The journey into assisted living was excruciatingly painful for both of us. But we adjusted as well as we both could. The 4 years that I was so very involved in her care exposed many instances where I could see that she was manipulating me. And when everyone said that people with dementia cannot manipulate, I knew that there had to be something else, or everyone else was wrong. If you think your loved one has dementia, but you see signs of manipulation, consider brain shrinkage.
I have learned that older people who might appear as though they have dementia, CAN manipulate the other people around them. But instead of dementia, their issue is “brain shrinkage commensurate with their age.” Look it up. I am glad that I did.
she has been this way ever since I married her, she was 24 then but now she is 36. its very hard to focus on further career growth and kids activity...I am going into depression state sometimes because of unbearable taunting ?
does dementia happen to such a young age people? oh Ya forgot to mention, she is 100% manipulative and tells complete wrong story to her won family.
whats the solution? save me
2 of my 3 brothers understand that I will not put up with unlimited demands by our mother (the other one wouldn't care and just about never comes to see his mother). One brother was going to make a special trip here to look at Assisted Living facilities, but that never panned out. Mom has announced she won't be willing to look at any AL places "for at least two years."
I am so glad that there is someone else here who believes that adult children are not bound to provide care in the home for elders. I have also told my brothers that our mother is not coming to live with me. (It helps that she clearly told me that she didn't want to live with me several years ago.) I stayed with her for 8 days and nights 1.5 years ago when she somehow hurt her back and she was nearly helpless. That time with her was unbearable, as she ordered me around. Yet now she says I did NOT do that -- that at the most I was with her for 2 days, and that she could have stayed by herself. Ummm...NO. She was prescribed powerful painkillers and was not to be left alone, according to the dr. My brothers knew full well what I did for her, as I informed them. I will not be doing THAT again.
I promised my dad as he was dying that we would take of her. That was 5.5 years ago (just months before my son died). I'm trying to work out with myself just exactly what that means. But I know it doesn't mean I am to sacrifice my own mental and physical health (particularly mental health).
I'm so sorry for the loss of your son. That must be incredibly painful. I can't imagine such pain.
It it good that your mom has long term care insurance coverage. Have you discussed your concerns with your siblings. It sounds like they aren't aware what you are dealing with. Would it help to give them the heads up, so they know what you will not be doing?
I'm of the opinion that adult children are not bound to provide care in the home for parents. I don't think it's selfish, but realistic and practical. That's just me. I would not want my adult children caring for me and not living their own lives. Others have a different view on this.
I think that dementia patients offer particularly harsh challenges for most family members caring in the home. That's why we need a lot of help. I took solace in that fact when placing my loved one into Memory Care.
"...I think it's so important to have a very long fuse and be of a very special temperament who can tolerate a lot."
And that is the gist of why I am NOT looking forward to increased caregiving responsibilities for my mother, which was starting to happen (until she got mad at me and now hardly calls at all -- not complaining! but it will end when she stops driving and I have to be her taxi service).
I do not want to be her caregiver, but as the only local sibling (and the only daughter), I am expected to be the one. It is what she expects. When I mentioned the dirty "c" word (compensation), she got furious. She thinks I am trying to take advantage of her. Short-term memory lapses aside, she doesn't forget THAT!
I do not have the patience to deal with her controlling ways. I have never had a good relationship with her. I love her, but do not like her. I resent that my 3 brothers are all out of state. When the demands on my time increase, I will expect compensation, as that is the only way I can do this (we could use the money).
I have had enough to deal with in my life by losing my young adult son 5 years ago suddenly and unexpectedly. I will NOT give up my life and health (as so often seems to happen) to be the Daughter-Slave to my mother. She has excellent LTC insurance, and once she qualifies I will expect her to use it. I don't even want to hire/supervise the in-home help, if she ever agrees to even that.
I have informed my brothers that I will just walk away if things get to be too much for me and there is not adequate compensation.
Although, there is a lot of frustration, hurt and resentment about how a dementia patient treats their caregivers, it's not much that can be done, except, the standard, medications, redirecting, distraction, etc. The patient can't learn anything new, so you aren't likely to teach them a lesson. And even if you did, they would forget it in short time. That's why I think it's so important to have a very long fuse and be of a very special temperament who can tolerate a lot. Some people don't do well in residential environments due to aggression and resistance. There are places who do a wonderful job and they are also an option. (Memory Care.)
"But I still struggle with why anyone trying to help someone should have to put up with bad behavior at all. ...dementia, personality disorder or not. And what I've noticed is that the dementia sufferer always targets the person who cares for them...they rarely lash out at a stranger."
From what I have read over the last couple of years, it is extremely difficult for us as loved ones and caregivers to really step back and not see the dementia behavior as manipulative, mean, ill spirited, selfish, controlling, etc. No matter how hard we try, I think that some just can't let go of that.
Apparently, many families have long standing issues where there was a lot of dysfunction. Often due to the fault of the person who now has dementia. I suspect that the loved ones just can't bare letting the dementia patient off the hook, so to speak. Still, I think that medical information confirms that not recognizing the limitations of the dementia brain, is not helpful and only a fantasy for those that insist it can happen.
One of those asking about what happens then....I think that we just have to protect the dementia patient loved one and keep them from harm as best we can. They cannot be held responsible. We can't place expectations or demands on them. It's a waste of time and will likely be met with disappointments. We can't expect the dementia patient to use good judgment, make the right choices, show respect and appreciation, act nice or give us love. We must do that for them with no expectations of them in return. We can't lose sight of what is really happening and not take it personally.