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She's too weak to walk with her walker or stand so I can help her toilet but if she's left on her own she gets up and out the door? WTheck? "I'm just so tired." On and on and on and on - anytime I need her to eat or transfer from wheelchair to recliner or transfer to toilet or stand and brush her teeth or ANYTHING. Now if I have to take her somewhere, doctor, church, store, cemetery (I swear if I told her we were going someplace to be drawn and quartered) she can stand and practically run down the hall. If she is hanging on to a grab bar and I want her to sit down in the wheelchair because we are both falling towards the tub she can hold us BOTH up by the grip of one, trembling, 87 year old hand. She gets in a cycle of self-pity, crying and whining about fillintheblank and it just shatters everyone around her, but if it is just us and I tell her to can it 'cuz I'm not buying it she brightens right up and proceeds to call me all 13 words you can't say on television. Is it just me? Is she capable of tailoring her responses for JUST ME? The doc says it's the disease, she just doesn't know what she's doing. I am having a VERY hard time buying that as she is pi-ti-ful for everyone (and they all buy it and feel awful for her and pet and try to console) but I have found she is IN-consolable when she is like that. So I make her mad and she snaps right out of it and fires up at me and then she is good for a while. What gives? Oh, she's 87, about an early 6 on the 1 to 7 scale for Alzheimer's, she still knows who we all are, I am her daughter-in-law (friends and prayer partners for 30 years) and primary caregiver.

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I'm on board with all these thoughts on this behavior thing. I know the brain with most memory impairments is not a healthy one. My brother has ALZ and from day 1 he has been angry, I've been on my guard. He has said what he wanted, or so it seemed, his filtering gone. Even now, in a late stage, he seems to have no problem lashing out with the worst of the words. Most bully behaviors calm down with stages, without even introducing meds, but some stay on or even escalate. What's the answer? A facility? They will not, cannot tolerate a sign of bad behavior. They will either increase meds or introduce new ones, not used in a home environment. A facility can also ask your loved one to leave, others cannot be put at risk. Is home a better choice and for how long? When is when? I don't think a caregiver should be faulted for correcting bad behavior at that moment. I don't think it's wrong to advise that profanity won't fly at the time when it's used. We know this is in vain, not to be taught, will be forgotten. Caregivers have feelings, it's not good to keep those inside, buried. We also work on instinct with so many deeds, it's only natural that we may not always bite our tongues if we are frightened or hurt by angry words. We hang in there, maybe too long, because we care and love. We're not mean or stubborn. We get a bad rap at times, so, please give us a break before you condemn us. Caregivers take care of you, stay focused and strong. God Bless
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I have to agree with Riley. I don't care if it is the disease, I am not going to put up with abuse from a person I am trying to help. My father likes to pull the same stuff. Acts helpless around me but get him into a casino and he moves like OJ in an Avis commercial. Another poster had it right when they said to let them live the consequences. I don't coddle my father. I know what he is able to do and what he can't do. I refuse to do things for him that he can do himself. And he does act like a 4 year old when he wants to manipulate me. It is so obvious it is funny and he thinks he is being so sly and smart. Then I get offended that he must really think I am stupid to fall for this. Luckily my father is not abusive, just very needy and a bit manipulative. I would not be around him if he was.
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I was often confused by my fathers actions and words. I asked after several evaluations, at two different rehab facilities, if they found him suffering from dementia. Each time they told me no, he has some age related forgetfulness,and some confusion caused by the opiate pain killers, but he is intact. It caused me to lose patience with him several times because I felt if he was intact, he was just being obstinate and manipulative.
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Pargirl, Yes, Mom is on medication. I am in touch with her doctors on a regular basis and we have tried many different things. I did not say that I did not agree with putting a LO in a facility. In fact, I am very sure, that at some point in time, it will become necessary for my mom. However, my feelings are that I won't do it until I can no longer care for her myself and I have no other alternative. I also was not telling others that my way is best or that they should not consider a different option for their LO. I was simply stating why I do what I am doing. We are all different. Our circumstances are all different. Our options are all different. We all have to make the decision for ourselves based on what our best options are at the time.
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I appreciate the posting on the link for the article about how Dementia may appear to be manipulation, but, it's not. Dementia is a disability. I pray that those caretakers, especially family members who are caring for Loved ones with dementia, would educate themselves about how it's brain damage, not manipulation.

When a doctor says the person's behavior is due to dementia,( brain damage), then, we as caregivers are bound to adjust ourselves to this mindset. If we are impatient, we must muster it. If we are thin skinned, we must get tougher. If we are confused, we must learn more. And then if the challenge is too great, we must place the care of the LO somewhere where there are those who can do it properly.

Expecting the disabled person with brain damage to get with the program is not helpful or feasible. It's not about us, it's about them. I don't think there are any situations where the disabled, brain damaged patient's care is contingent on their good behavior. Regardless, they must be dealt withy love, care, compassion and patience. That's why they have laws about it.
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I fully understand the feeling some people have with regard to "obligation" and "guilt". But here is something I want to throw out to all of you. Do you agree or disagree with this statement? When the behavior and actions of someone else causes you emotional, physical, mental discomfort - thereby disrupting your life - which you have a right to live in the best way - do you stay in the situation or do you remove yourself from it? If you answer that question, then you will know what to do with those you care for. No one can answer that except the caretaker. Each case is different.
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Blessings4Ever I agree with everything you wrote, and especially the caution about not using placement as a threat. That would be like telling a pre-schooler to behave or they'll have to go to kindergarten. Many, many of the people we care for are going to wind up in placement, no matter what we do. So making them think of it as a punishment is not helpful (or nice).
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Riley2166, I put up with it because I loved my husband dearly, and I understood that his behavior was not fully under his control.

Yes, sometimes the behavior looks manipulative. But if you examine it, it is more like the manipulation that a four-year-old would try. It is not the sophisticated ploy that a healthy adult would try. (Although someone who has been manipulative all their life may still retain some subtlety.)

My husband had dementia. His brain was damaged. In fact, his neurologist (a researcher with access to diagnostic scanning devices not yet in widespread use) shared with me a colored picture of a section of his brain, and also what a normal brain looks like. Yup, there was damage.

Upon autopsy his brain was found to have very defuse "Lewy bodies" -- all over his brain, confirming his diagnosis. The damage could easily be seen and counted by those trained to look for it.

His behavior was not always under his control. And he was unable to learn new things. Telling him "in no uncertain terms their behavior WILL NOT BE TOLERATED," would not teach him to not do it again. He might understand and want to please me, but he would soon forget. Tough love for those with damaged brain is just cruel and doesn't accomplish anything.

But there was some behavior I would not tolerate. In his belligerent period he threatened to push me. If that had escalated and continued I could not have tolerated it. But I wouldn't have tried to teach him to stop. That is pointless. I would have arranged for placement for him (assuming doctors could not solve it with medications.)

I'm amazed that some people can care for a narcissistic parent. I really don't think I could tolerate that. (But you never know until you are in the situation.)

I did not stay with my husband or care for my mother out of a sense of duty. I did it in love. Each of us has different tolerance levels, different boundaries we need to maintain.

You may not give a hoot what the reason for the behavior is, Riley, but the fact is that dementia (or any kind of damage to the brain) is not the same as a broken arm or respiratory illness.

Those lewy bodies (tiny masses of a protein) that caused my husband's dementia also causes Parkinson's disease.

If your loved one had Parkinson's and sometimes could stand up and walk and sometimes needed help, sometimes had very shaky hands and spilled beverages but sometimes could drink just fine, would you assume she was being manipulative? Would you tell her in no uncertain terms her behavior WILL NOT BE TOLERATED and she has to stop falling and keep her hands from shaking?

(Sorry this is so long, but it really hits one of my hot buttons.)

Here is an AC article on the subject. Scroll down past the insert ad to read the entire article. https://www.agingcare.com/articles/dementia-behavior-manipulation-154554.htm
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I hear you Riley2166 and thank you for your excellent question! It took me a while to "toughen up," to realize I could not reason or win battles as a caregiver to my brother. I chose to educate myself on ALZ by reading, asking questions to others in the know and attending seminars. I learned how to take care of my brother, realizing this disease is not "cookie cutter" and just maybe "the books" aren't always right. The "same old" not going to work for each person or every situation. I've never punished him for behavior, just have learned to ignore it, not respond to it with begging or tears, been there/done that. I walk away and do a time out for both of us which seems to be the best choice. I get a yes from him on attending a day program and doing an occasional respite stay, both at facilities, threatening not an option I would choose. I really don't want him to fear other places than home. This gives me/us a much needed break as well. I do know that this disease is not nice, it is winning, I see that and it saddens me, no matter. Time passes quickly, instincts kick in, we start to get things right. I have to believe we do because we care and love.
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I would like to address Layne2017's post about putting in a facility and your loved one being scared. I don't know if she is on medication or not but sounds like she needs to be. Maybe she is already and the dosage isna't right. At any rate, being in a facility (and I have had the chance with all my family to be in many), each one knows with the few exceptions how to handle this and the dr. associated with the facility can evaluate and then proceed from there. We as caregivers can't do that. We just get more and more frustrated even with the boundaries. Plus as I had said in my post or on another post for an answer, they get used to all the aids and THEY become their family almost. They see them on a daily basis and bond with them at least that's what I have found. Quality facilities are not like they used to be. Nursing homes were nightmares (unfortunately some still are) but that's why you still have to stay on top and be their forever advocate and make sure everything and everyone is being well attended. Go at different times of the day. Don't have a pattern. Most of the husbands and wives that came to my mom's place came like clockwork at lunch. Well, the aids knew that. Fortunately we all watched out for each other and loved ones so we could confront the situation and report it or handle it ourselves. Anyway, as for being afraid my mom was one of those but in her facility she could pace all night long if she wanted to never out of site of the aids and nurse. they knew how to comfort and redirect instead of saying "there's no reason to be afraid". Please don't let that keep everyone from looking into facilities. You just have to find the right ones. God Bless
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Okay, so if I had seen the word, "Alzheimer's" first word out of your post, I would have said "There's your answer," which it still is your answer. You have to understand that her mind is broken. The rationale has left the building. There is no point in trying to fix what is only going to get much worse. You will come up unsuccessful every time.
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Riley the short answer is that care in her declining years is HER RIGHT and OUR RESPONSIBILITY. We have set boundaries and confronted behaviors and dealt with the ensuing passive aggressive garbage. And we've made the statement that her needs have to be within our ability to manage or she will have to go somewhere else. However beds and resources are limited and she does not really need skilled care. Around here it's not as simple as booking a room in the Best Western. (We do that for US occasionally!). Insurers require proof of medical need (she doesn't), most places have long wait lists with priority based on need.

During good spells,she can stay in her own home with support (she doesn't drive, can't manage her own shopping or interact with the outside world very effectively, she is anxious and lonely and tends to get her medications out of whack). Yes, it's a royal pain in the hind parts and yes it negatively influences our quality of life, and it's twice as hard for me as I am a newish wife and never knew her (though by all accounts she was never easy to deal with) but she's still our responsibility. She's 90 so it won't be forever (though she's in remarkably good physical health so it may BE). This is not how we pictured our retirement but it's what we got, and resenting it just makes it worse.
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Riley2166, I understand your questions and obvious frustration. I deal with my mom and dad who both have dementia and are both physically handicapped as well. I guess, some of my willingness to "put up with it" has to do with the fact that you just never know for absolutely sure if they really know what they are doing. I don't always just sit back and take what is seemingly abuse. I have set some boundaries for my own sanity and I do enforce some hard "rules of order" when I have to do it.  Dad is not the problem.............he's the same as always, just confused. Mom, on the other hand, is doing exactly most of the stuff that is described in the above posts. She was not always like this. During my lifetime, my parents were awesome parents to me. I was a very rebellious teen and made a mess out of the first 30 or 40 years of my life. They were always there for me. Never judging, only helping and loving me. I know in my heart, if the circumstances were reversed, they would love me through it all and take care of me for as long as they could. My mom told me several months ago, in one her more lucid moments, that she loved me and that I am a good daughter. She said she wanted to tell me that and wanted me to remember it for when the time comes and she might be mean and might not even know who I am. My real mom is in there somewhere. If I put her in a nursing home and she was in one of those frames of mind that she was afraid (as she sometimes doesn't know where she is even at home), or delusional, or even her mean self, there would be no one there to hold her and tell her that they love her and that it will be alright as she did for me all those times that I didn't deserve it and had put her and my dad through h*ll.

Sorry, I guess I'm rambling, but this is one reason (my reason) why some people try to continue to care for their LO and "put up with" their bad behavior. 

There are as many reasons as there are people. Financial concerns, legal issues, family problems...................................and the list goes on.
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Will someone please answer my question because I simply do not understand something. If you are a caretaker to people who act like this - and I don't give a hoot if it is because of the disease they have, their mental issues, their personality, whatever - WHY ARE YOU PUTTING UP WITH IT? Let them have it in no uncertain terms their behavior WILL NOT BE TOLERATED and if it continues they will be REMOVED AND PUT INTO A FACILITY. Why do people (caretakers) allow such obnoxious behavior?
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Runaway.....I laughed out loud when you described her grip like a silverback gorilla and boy did I need that! I know it's so hard to live under those conditions. I was also care giver to my in laws until their passing, care giver to my mom with Alz/dementia until her passing in Aug. and my grown son lives with us along with his 2 small boys off and on. Oh yes, and I still take care of my almost 95 year old father. I lived with my parents for a couple of mos while my dad was recovering from a massive heart attack and couldn't take it with mom. I tried. At that time she was probably an early 6 or late 6 also. Plus the fact that there is NO way she could have taken care of my father since she kept asking why the Hell he wasn't out of bed yet to take her to eat! I would tell her mom, he just had heart surgery. She would turn on a dime like I was an idiot and say well I KNOW THAT!! Turn to him and say come on now, get up and take me to eat. The things that would come out of her mouth. I had to look up some of the bad ones just to see what they meant! :)) Where did she learn those?? Anyway, the last straw was when she got mad at dad one day and I saw her try to hit him because he wouldn't get up. I knew something had to be done. It was the hardest thing I've ever had to do but I had to place her in a facility. Thought it would be only until he recovered but alas.....7 years. It took about 6 mos for her to really settle in but that was her new home, her new normal. They were trained in how to handle ups and downs, crying, falling, pacing, etc. I wasn't. None of us are. We are too tired and exhausted. The aids at the facility get to go home, we don't. This is a shortened version of everything that happened but please, please look into a facility. Talk to a social worker, go visit facilities and see what they offer. If there is no money for that then there is help. Again a social worker can help with that. It's not worth ruining your heath or ife to try to make this woman happy when she is on a journey that none of us understand. Good Luck and God Bless
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Oh RunAway, love the name; and all of you, what we do and deal with as caregivers, I hope and must believe it matters. As a caregiver to my brother, with ALZ, I have heard for most everything, "It's the disease," or, "Personalities change." I have come to realize after 6 years of this "roller coaster ride" this is somewhat true. I am still baffled on the "pick and choosing" I see him able to do on some tasks. I see his "old personality" alive and kicking still. From the start of this journey, I did not hesitate to travel with him, he has seemed to know who to be charming with; when to try or actually do for himself or not; the timing on when to attempt control, fib or manipulate. It seems, from day 1, he recognized the difference between passive and aggressive behavior and when, or whom, to share it with. Professionals say the primary caregiver will probably become "the bad whatever," what if you have been "the bad forever" no matter? The personality hasn't gotten worse or changed then, not really. Caregivers stay safe, strong and focused. God Bless
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When my mom would be in a mood and get angry and silent with a caregiver, we would call on the phone to try and explain they were nice and needed to stay and help her with dinner. She was super happy and cheerful on the phone for our call. When she hung up she went back to being sullen and quiet towards the caregiver. So she definitely turned the moods on and off for specific people.
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Now, Mom won't speak to me. She wants me to stand there and play guessing games as I try to interpret nods, eyebrow raises and sometimes vague hand gestures. She puts on a convincing show of no longer being able to communicate.

So, I told my daughter last night to go in and try to get her to speak. I stood in the shadows. It took my daughter less than 30 second to get my mother to say very clearly what she had done during the day.
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Oh my goodness you just described MY MIL. We deal with it by ignoring the histrionics, and setting her up to make her own choices and live with the consequences. I also detach from her mind games (I taught juvenile offenders for 25 years so I answer happily to any of those 13 words without taking it personally). I'm an aftermarket wife so as the most recent addition to the family I am to blame for all the world's evils. She is quite capable of morphing into a whole different person in one heartbeat or the turn of a word. A sense of humor helps, and some time to yourself when you can swing it.
Bless you -- you and I are standing in the same pair of shoes. I'm convinced Mama is going to outlive us all out of sheer spite!
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My Dad was the same way. He needed my help in and out of the shower(four inch step to get in or out), up and down the 2 steps to the garage and the car. Couldn't put his coat on or off without help, or pour milk on cereal or water in the coffee pot. He couldn't see to sort his meds (we had cataract surgery but he still wanted me to sort them) and required me to repeat everything 3 times.(because hearing aids just made everything loud) But over the course of a few months. I caught him out driving after I left to do some shopping. I caught him down in the basement smoking with his feet up on the coffee table. (13 stair steps) He didn't know I was watching, but he checked to see the coast was clear, then zipped with his walker quickly around 2 cars to my vehicle to go to my brothers for dinner. It was a real eye opener for me and I got a little testy about him not doing anything for himself.
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At first I thought I was imagining it but then, one time my SIL (A Psychologist, BTW) pulled me aside during a visit and told me that the minute I left the room, Mom completely changed. She puts on a show where she looks and acts like she is being held hostage by an abusive, armed gunman and is afraid to speak or even make eye contact. Then, when I leave the room, she brightens up and engages with everyone.

She will be totally helpless and unable to even lift her hand to put food to her mouth but put a cookie or piece of chocolate within reach and she snatches it so fast that you don't even see her hand move.

She is too weak to do anything but has the hand strength of a sliverback gorilla - especially when I am trying to mover and don't realize that she has a death grip on a fixed object.

She can't remember how to do simple tasks or follow instructions given a minute ago but has managed to formulate lies (that, of course, I have caught her in) when she needs to. Example - I didn't give your brother my credit card number, he must have still had it written down from a while ago - LIE. Her caregiver had just told me that she had given it over the phone that day. She didn't forget, she lied so I would not yell at her.

No, Runaway, it is not just the disease. I think the disease exaggerates the personality traits but she is still in there sometimes, pulling the strings when she wants to.
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