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Meno - I am not sure if you understand the profound effect your posts have had on so many on this forum. I only accidentally happened onto your thread and you have helped me feel more appreciated in one day than anyone I have ever spoken to in person in the last 7 years - even my hubby.

Thank you very much. Your kind words mean so much. I hope that whatever procedure they have in mind for you helps your appearance so you can feel better about getting out and about without 'looks' from strangers. People can be so cruel. You and your family have endured some very stressful times and I feel guilty giving up on my MIL - but I must or I will die and then where will she be?

I hope with all my heart that you are not correct about her situation and she gets to spend the majority of her remaining years in the Assisted Living part of the facility. We cannot foresee the future. But, at least if/when it happens - a move won't be quite as traumatic - she will be in fairly familiar surrounding. They do try to keep folks in the ALF side as long as possible. I am so glad you can say your are HAPPY. We all want to be :0)
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Oldcodger2-I felt your pain in your pst and I am allowed to post on ome question or post a day because my daughter looks in and makes sure I am not being a nuisance. I am fortunate in some ways to have the kind of dementia I was diagnosed with but it leaves me physically disabled also so I shuffle along like an Old Codger-fall alot and have a frozen smile that scares the heck out of me and anyone who doesn't know that I cannot change expression. Having said that I can only think below my ears and frontal lobes-that is what the drawing shows. I am trying to give you some background in case you didn't already know. I was not always happy. I came very close to being put in a home with bars on the windows soon after my wife suddenly passed. I cannot remember if I had too much radiation or if it was a tumor that caused or started my condition and my daughter is not here this minute to help me out as she is picking up my grandchild from school. I am safe to be left alone for a while. I know my boundaries and I obey them because if I do not I will go to a nursing home or a hospice. I can tell you love your MIL. I am happy that she does not need sedation. I would like assisted living but my appearance does not allow it. People stare and whisper and point and that makes me paranoid. Also I am on a feeding tube. But enough about me. I have read everything I can find on dementia and AD. It sounds to me that your MIL is in the early stages of one or both and in my opinion there isn't much difference between the two. My psychologist agrees. I record and write everything down. I remember from recordings and pictures and my notes. I know what I did yesterday from my notes. If I forget to include something which I do 90% of the time or 45 or 60 or 20 I forget. I think we all live life this way. We have memory cells instead of notepads and we refer back or replay what we did yesterday. We have senior moments as we grow older-well most of us do. No one likes change unless it is their idea. MIL will be resentful-she already is. So be prepared and be prepared to be pointed out to everyone as the bad person. Do not take it personal. It is part of her disease and her doctors know this and the staff at her assisted living will know this. I do not think she will last long in assisted living. I cannot explain why I think this but this is what I think. Oh-because you told me she is more suspicious and negative-that is why I think she is on a downward spiral to another facility. Classic signs of deterioration and a break. Then even members of her family may want to lay blame on someone. They may say: well she was doing okay until you put her where she didn't want to be. I don't think about tomorrow but sometimes I think if I do this now it could cause this tomorrow. Do you understand? If I plant a seed I know it may grow a tree or I can say tomorrow I will go plant a seed but tomorrow I will not remember to plant a seed unless I mark it on my event calendar that I usually forget I have until I look and see it in front of me.
Dementia is just, just so hard.. Your MIL does not understand it Science is trying but until they figure it our familys are ripped apart and the only real help are the caregivers who are truly CARE_givers not just bed pan changers-Or family members who spend all of mommas money or children and grandchildren who take their drugs. Caregivers are on the front lines and I think underappreciated and underpaid or under sompensated for all they have to put up with. Thank you oldcodger2 and cattail and everyone who talked my sis-daughter for letting me say stuff.She is back now and I am happy..
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God bless you Meno - you have a heart of GOLD! I can tell you have empathy beyond measure.

I do love my mother in law but I am so very tired. I am not patient with her like I should be. She deserves a better caregiver - one who does not resent being one. And I need a long break and this is the only way to get it.

The Assisted Living Facility where she will go is a lovely place. An acquaintance of ours lived there several years and said it was a good place to be. We also know one of the head nurses - she has worked there for 25 years. To me, that is a good sign.

Our friend was reluctant to go at first - but adjusted well and continued to have friends visit and live a full life for a long time. We hope my mother in law finds the same peace there.

I spoke with one of the ladies who lives there just yesterday. She was very sweet. I interrupted her bingo game - but she didn't seem to mind too much and I just needed to ask one of the residents if they were happy there. She said YES and smiled. She said of course she wanted to stay in her home - but that wasn't possible - but she was happy with her life there. She said everyone was good to her.

She later saw me again in the hallway (she had just come from their little ice cream shop on the premises) and she pulled me aside and whispered - "I want you to know your mom will be as happy as she allows herself to be here. If she takes part and is friendly - she will be ok.' She didn't realize it was my Mother in law. That's ok. I consider her my mom anyway. We are not throwing her away and if she will let me - I will visit her often and continue to take her out to lunch and for rides in the car and shopping. It is 15 miles from us and two of her grandsons live nearby. We will do our best to help her enjoy her life. She will NEVER be forgotten.

But, Meno - sometimes the caregiver breaks. I am broken. We are not perfect or superhuman - we get old and tired too. We don't want to - it just happens. Caring for my mother in law isn't the only thing we worry over in this life. Just living and making a living is also difficult and stressful.

I don't know for sure that she has dementia - from what you say she probably does not. It is some sort of memory loss issues though. She forgets a lot. Mostly what happened yesterday or last week. She remembers long ago and a minute ago. I just saw a note on her nurses sheet once that said 'beginning dementia' - that was a couple years ago. I think her personality changes have happened since she had a stroke. She is angrier and much less happy. She is more suspicious and more negative. She has no happy memories of people or places in her past. She remembers all sorts of unpleasant things about people - dead or alive.

If she can't find something she thinks I took it. That sort of thing. But she has been unhappy for along time.

Her other children just won't help. They live in other states - but even when she was more well they didn't have time for her. I have asked so many times. The worst part is when they promise and then break the promise. One of her sons has done that many times. The last time was just last week - he promised to visit on his way elsewhere and after she dressed up and waited all day - he called her to say he wasn't coming. He wanted us to tell mom and we said no, he needed to do that - so he finally called her after she had waited for him for 6 hours.

Once in a while my husband stays with her and I go away for a weekend and stay with a friend. But she resents it and wonders WHY I need to go away. After all, she is no trouble and she takes care of herself. She tells everyone in her pitiful voice that 'she does the best she can.' 'I try sooooo hard.' And I believe her - in her own mind she IS doing the best she can and she IS TRYING hard. But the situation is still unbearable for me.

This decision to stop being her care giver was a long time coming and hurts my heart. I am also sorry that reading about it hurts you, Meno. I realize that she cannot fathom my pain because hers is too great. Her other children 'perhaps' could have prevented it or postponed it if they had helped with her care more - but they have not and will not and it would be 'too little too late' now.

Even though she may no longer live in our home - we will still CARE and visit her often and do all we can to help her have as good a life as is possible. We know she cannot understand the WHY'S of this. She either cannot or will not understand. She could a couple years ago - but not now.

You have a loving, caring family and I am sure God is smiling down on all of you today. Thank you for taking the time for me today. I cannot believe how much love and care that is shared here.
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Menohardy: I think you are a very wonderful man. Sending love to you and your daughter.

Cattails
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Meno, thank you so much for sharing with us.... I appreciate all your words, insights, how you express yourself.... I am learning alot from you... and thank you Menos daughter.... you both are very appreciated....
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sorry-I keep confusing my daughter with my sister. No one hurt my feelings. I thought I hurt someones feelings. I have difficulty remembering one post from the next or even what I said from one minute to the next. I do not understand my condition. I just said minute and I do not know what minute means-I did but now it is gone. This is my condition. I do not know where my thoughts come from or how and my doctors do not either. Oldcodger2. If you could forget yesterday and give no thought for tomorrow would you put your MIL in the ALF today?
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I am very thankful to my sister and to my friends on this forum. You make me happy.
I do not remember talking about why I hate showers and water that comes out of a pipe but I must answer oldcodger2. I spent some time looking at my older posts because sometimes I do not know if I said something or only thought I said something. I said that I will one day be lost in my own mind. I said that one day I will Nova and I meant that in two ways. To me Nova means my mind will catch fire and like a computer die. But my body will not burn. My body is my house. We do not take someone we love who's brain has caught fire and simply hate them. We can hate that it happened to them. Hate the disease. Hate the fact that the person who loves you and gave you birth has gone into Nova. I have said I know the time will come when I will go somewhere else to live. It is my hope today that my sis-my daughter will not forget me. That just as she loved her mother and puts flowers on her she will come visit me wherever I am dead or alive. Especially if I am alive becaues I know that parts of my mind will recognize her. Your mother is clever to suddenly wake up or behave the moment the Doctor comes near. She is in the neurotic phase of her affliction. This is the phase where her personality reacts against itself. It seems that our personalities reacts against our true character. A reaction against itself leaves the person who experiences it estranged; cut off, from himself in certain ways. He does not know what he feels or wants to do. He does not know what he feels, or sometimes he knows he has strong feelings or reactions but they seem strange to him, as in the case of phobias, mysteriously at odds with his judgement, attitudes or common sense. I wonder how long you have gone without a vacation? When was the last time you left your mother alone with a humane caregiver on a trial basis and spent two weeks without mom.? I am wondering how you can put up with her and keep you sanity. If I reacxh the stage that your mother is in I want to be taken to a home where I am treated well and I want you to come see me regularly because part of me still remembers parts of you. You must know that your mom might be at a stage where she does not see you as her baby. She may not even like you. Be her friend then. Momma is looking at oldcodger2 not her darling child. She loves the child that lives in you but you look nothing like her child anymore and you expect her to act like momma used to act but momma is ill. Her brain doesn't work right and that frustrates you. That might even anger you. Forgive me I re read your post and you are talking about your mother in law. My daughter just told me what MIL means and wants me to figure out alf but I don't want to. I need to read posts several times before I answer and I have made a note of it. your MIL is being childish. This should tell you she is hurt by your telling her you no longer want to be her caregiver but you want still to be her friend. She does not want a caregiver she wants a friend who pretends that everything is fine. I do not know if I am making sense to you or to anyone. Okay I read where your post says her other children rarely call and you have not had respite in 7 years! This is so wrong. You need to take it up with them and not take it out on her. I can tell you are fed up when you say you are her social planner, her secretary, her cook. Even if you were getting money or some other compensation you deserve time off from your MIL and she needs time off from you. Maybe her doctor should write you a prescription. Geriatric doctors love to go along with these kinds of interventions. He might say something like-gosh you look un-well (in front of your MIL) and you can say well I am needed by my dear MIL and the doctror can say to your MIL now dear, dont you think DIL needs to take some time off? What do you think? Should we give her a rest? Do you have any ideas where MIL could go for a few hours or days or weeks? I think you must love your MIL very much and i think you will miss her more than you know after she is placed somewhere else permanently.
You say she has passed her cognitive tests? Are her doctors giving you her scores or levels of dementia? What does she do around your home? Can she walk? Hold a conversation? What are her needs? I read she gives you mean looks, digs, insinuations. I also read she is in denial that she was bedridden. It is quite possible she does not remember/ I think you need to be recognized by the other family members. Maybe you are more angry with them? She came home and went into her rooms and wont come out. Of course her feelings are hurt. Especially since she has some independence. I do not think it is dementia I think she is being childish and wants you to coax her out, on her terms. Since she may have a few weeks before she goes into assistid living she wants to punish you. She is hoping you will give in. What are her physical problems and needs? I figured it out-Alternative Living Facility! And a year ago I almost went to one of these places but my daughter who was smarter than my other children loves me she found out and brought me home with conditions. I am level 5. but I do not argue with my doctors and especially my sister because no one can take her place so even when I want to get mad I find something else to do and this is one of them. She sits me down and I read and try to help and not hurt anyones feelings
I have many physical problems and I have a ritual I must perform every day and if I do not do it I cannot function on any level. I must draw a circle and put the word me in the middle. My doctor said that this is OCD and part of dementia. Some people with severe dementia need to find their ME place or they will get lost. This is how I explain it to myself and my doctors. Before I found this trick I used to be so afraid and I just rocked and moaned because I was inside a broken mirror and no one could find me. Help your mother in law find her me place. She is afraid of change and afraid of being lost and afraid she will be forgotten and she is unhappy/ Do you sing with her? Do you act like her friend and DIL or a caregiver. I have a caregiver who takes me places. She took me somewhere not this day-some other day and I cannot remember but I know I had fun because I just thought of her and smiled. I hope she comes back to ME soon but my sister is telling me not this day but soon. I never know what soon means but sometimes I like the word and sometimes I don't. How long is 7 years? I can remember 5. is the day I can say whatever I want and my doctor writes the words down. This is menos sister. Every friday. Meno cannot say the word friday he says 5 for friday. His therapist comes every friday and meno is asked to say whatever comes to mind. It is to penetrate the superficial, the purely rational and consciously recognized, and to gain or improve access to the essential subject matter of his therapy, the therapeutic material, the expressions or reflections of the underlying neurotic problems or conflicts. It is assumed that this material must be provided in this way by meno, that it requires his cooperation to this extent, and that it can be found in what he provides. It is understood that this material is likely to be disturbing or painful to meno, and menos refusal or inability to comply with these procedures-sometimes deliberate, in the more interesting instances not-is well recognized as resistance. Resistance indicates Ego in dementia patients. Thus far meno has demonstrated he has no detectable ego. The part of his brain where ego resides is shut off. He is in a state of Now perpetualy. I hope this can be worked back on topic. Please allow me to try. Meno as you know, mentioned how water hurts his skin. At first he was not taken seriously until he developed whelps and wheels covering his entire body. His PCP ordered a nurse to give him a bath using no soap and he presented with the whelps and wheels. She used a wash cloth she brought in a sterile bag, a sponge and a loofah-on three different occasions. Many elderly persons demented or not are adverse to bathing in water that has chlorine and other chemicals
He is capable of deep emotions. When I shower he thinks that because the water hurts him it hurts me and I will find him crying because he thinks I am or was in pain. He does this when I give my children baths. I have discovred that if I rinse him with distilled water he gets very happy. Just a foot note. Now I will return him back to his forum-sorry-I know it is off topic.
To answer your question oldcodger no I do not believe your MIL is exhibiting Dementia by behaving like a child. She is exhibiting all of the off shoots that go along with the disease. but not dementia itself. Look up dementia as it is defined. Find out what level of dementia she is in before you label her demented. A bit neurotic perhaps. How else can she fight back? I am looking at my friends picture.
I forgot about her until my sis-daughter turned me away so she could write something on this computer. My friend is very old. She is in the nursing home I will go to soon but not this day. I love her picture because she is an angel. I sit and talk to her on that day I go see her. She holds her doll in her lap and stares at it all day and she is smiling all day like me. She let me hold her baby and I got a gold star for being the only person she ever let hold her baby without her being bad when mean people try to take her baby away. Now she lets me hold her baby when I want to as long as I give her back when she asks and she says thank you isn't my baby adorable. Everyone clapped because she had not spoken to anyone except cuss words for a long long time but that scared her because she has no one but her baby to hold and they take it away when she is supposed to eat or take medicine. Why do they do that if they know it upsets her? So when she finishes cussing she then wil not eat. Oldcodger your MIL is acting the same way. She does not want to be in assisted living and she does not understand why you want her to leave. Why can't you do it a little at a time? If she can pass her cognitive test she can reason. I am a 5 on my dementia level but a 7 in some areas and a 1 in some areas and maybe a two in other areas. but my overall score is 5. I have a vivid recolection of my care dog. She was my whole life but one day I could not walk her anymore because it was cold and raining and I fell down so my sis-my daughter gave her away to a family someplace and then I had a stroke and my psychologist told my sist-my daughter she did a very bad thing to give my dog away because my dog was my friend and walking her gave me purpose and exercise and a will so what my daughter thought was a problem to me was what was keeping me alive or at least in better condition and I did not mind falling down because my dog let me pull myself up on her and she never let me get lost she just had to go to the bathroom and then hurried me back home. My sister was mean and I did not speak to her and I was bad and holered and rang my bell and that reminded me of a post someone asked how to help because their patient walked up very quietly behind her or him and she almost knocked her down. I wanted to write to the post and say do what I did with my children when they were toddlers-put little bells on their slippers and shoes. See-I can remember many things when they come to me. Caregivers if you see a patient as a problem use your mind to solve the problem. How hard is it to make a bracelet out of little tinkle bells. Do not lock your patient in-baby prof your home or their home. If your patient moans because they are in pain and the doctor says it is imaginary do not take that as Gospel-to the patient the pain is real and who cares if they are addicted to pain medicine if it is prescribed and given properly. If you suspect the doctor is just giving them medicine to shut them up take them to another doctor or an addiction specialist. Never ever try to detox them yourself. Ever. Shower watr hurts me-doctor says it is all in his mind-well they found out it was not in my mind it was the chlorine I was having an allergic reaction to and now my bedding doesn't make me itch anymore and my feet are not as swollen and my eyes are not swollen. Not this day but soon I am going to see a specialist who is going to try and make my face muscles relax. I am afraid but I trust my daughter and I believe a caregiver must win a patients trust above all else. I am not an idiot like some people think. My heart is full of love for everyone. Oldcodger I love you for being so good to your MIL for so long and she must ove you or she would be throwing a party. Someone like me who is so much worse off than your MIL and a stranger to you understands how important you are but I should not have to be the one teeling you this your MIL family should help you and give you the credit you deserve. All good care givers need more recognition for all the little things they do. I am thankful for your post because I will try to put sister in my circle from this day-she just hugged me and now she is crying so I must stop writing and give her a hug before I forget. Thank you oldcodger for helping me see a little better today.
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I just read the previous post about hurting someone's feelings and possible misunderstandings and typos - and we all make them - and I surely hope and pray I am not responsible for doing hurting him in any way. I thought Memo's posts were so heartfelt and eloquently spoken. Far better said than my feeble complaints on this forum. I hope he is able to continue to use his mind and heart to help others.
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I agree with Cattails - the posts by Meno are insightful and should somehow be preserved. They are answers to questions we had no idea we needed to ask. He is a blessing to this forum and I wish him peace - along with his care giver, family and friends.
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Menohardy - I appreciated hearing 'your side' of things - but, sadly, sometimes all the knowledge in the world can't fix a thing. My mother in law is the sweetest thing to anyone who calls or visits - but we rarely see this side of her. She hangs up the phone and the veil falls back over her face. The guests leave and the smile fades and we don't see it again.

She has lived with us for 7 years and the last three have required much more care and have taken a big toll on both of us. The more I must do - the more she resents it. We know she is unhappy. We know she is in pain. We know she grieves the loss of her husband, many friends, her health, her independence. But the more we do the more she resents it.

The digs, the mean looks, the accusations, the insinuations - they have all taken their toll on me - as has the actual care - which SHE SAYS SHE DOES NOT NEED.

As a caregiver, I hit a wall about 2 years ago. I crashed and burned. I have never been the same since. I felt that I was going insane. I cried a lot. I started 'rethinking' care giving.

She had several health crises that taxed us both emotionally and physically. Now, years later, she denies the 24/7 care that I gave her. Denies she was ever bedridden. She just forgot. If she doesn't remember - it didn't happen. She tells everyone that the cares for herself. She believes it - so it's true.

What so many don't realize is that care givers do so much 'in the background' that enables their parent or family member to maintain a semblance of independence. I am her cleaning fairy. I am her errand fairy. I am her calendar. I am her social secretary. There is no way she would be able to keep track of her appointments and meds. Her delicious, nutritious meals 'appear out of the blue.' She tells everyone she cooks for herself - when all she does is warm up a cup of soup in the microwave. But this is her reality.

But, when all is said and done, I am just tired and worn out and we have decided to put her on the list for an apt. at a lovely Assisted Living Facility. Her other children - who rarely call or visit - were consulted and could NOT POSSIBLE take mom - as usual. We expected that. After all, if they couldn't give me a week or two of respite in 7 years - they certainly weren't doing more.

We saw her doctor yesterday who guided us through the ALF discussion and of course it was ALL MY FAULT according to my MIL. And some of it may be at this point. But not before my crash almost two years ago. But living with such an unhappy, negative person has done terrible things to me, to my life and to my health. I know she can't help it, and neither can I.

We visited the facility and was impressed. The residents there seem content - they were involved - they were joking with staff. It certainly wasn't a prison. When we mentioned the ALF just a minute before the doctor came in - My MIL got mad and told her son and I that we could just dump her there and forget her - she didn't want to see us again. We didn't need to bother with her anymore. I know she was just angry. But it still hurts.
We told her that wasn't fair - why does she still love her other two sons who NEVER CALL OR VISIT and have done ABSOLUTELY NOTHING for her in years - but hates us - when we are only trying to help her?

When the doctor came in her demeanor instantly changed and she was sweet and amiable and agreeable Of course she told him she didn't need anyone to help her - she takes care of herself now. (I forgot to say that her helpful FAIRY at home is invisible).

I realize after visiting the ALF and talking with staff there that I could very well be part of my MIL"s trouble. I worry too much, I hover too much, I control too much and I do believe that once she settles in to her new routine she will feel a sense of FREEDOM she didn't feel with us. Without realizing it, we have contributed to her sadness instead of alleviating it.

I told her I wanted to go back to being her friend and daughter in law - not her care giver. Plain and Simple. I told her if she wanted me to visit her - I will be there. If not, I will respect her wishes. My husband will have to take care of anything she needs. She said she plans to spend ALL her time in her apt at the facility. I am sure she will change her mind.

The doctor gave her a simple cognitive test which she passed. What's funny is that if they asked her those same questions today, she wouldn't remember the answers. So, you see, no one really believes that she does forget. I forget things too. I think the difference is that I still joke about my memory and when the memory really becomes troublesome - it is no longer a joking matter and it makes a person angry and afraid. I realize this - but somewhere along the line - the frustration grows.

The last thing I want is to see is my MIL miserable. I prefer not to be miserable as I have been recently as well. My mother in law feels like we are throwing her away and that hurts. But I can't do what I have been doing any longer. We both deserve better.

She came home and went into her rooms and won't come out. She sneaked out and put a note on our kitchen counter saying she will fix her own breakfast, lunch and dinner. (she has a microwave and fridge and some foods on hand - but can't shop for herself.) Do we leave her in there to eat cold cereal, PB and J and Lean Cuisine or do we try to lure her out? It could be weeks before she is accepted at the ALF - depends on when an apt is available.

Is this Dementia or just 'acting out.' What do we do? How should we respond?

I realize this may have gotten 'off topic' and I am sorry.
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menohardy and daughter: I have read your dad's posts on other threads and it has never failed to move me. When your dad talked about how having a shower hurt his skin, it just blew me away. I have heard so many caregivers talk about the resistance their parent with dementia has about showers and now I wonder if the water hurts their skin. Without your dad's posts, I would never had even guessed that shower water could be painful.

I know a number of the posters on this page. Libracat has a mom who has a mental illness. Maybe she was wrong in leaving her children in the care of her mom when they were small, but she was much younger then and really wanted her mom's affection. That often happens to children who were abused; they have their own unique set of circumstances. Libracat and I have bantered back and forth over the issues between her and her mom, especially the meal issue. Much of what you dad said to her, I have said. Nevertheless, I know Libracat is really doing what she feels compelled to do. She truly believes that she is doing the best for her mom and her mom has lived with her for the past 4 years. Libracat is a good person, even if I don't agree with her. All of us who walk this earth have our own crosses to bear and we will do it our way until we find a better way.

Your dad is a moment in time to all of us. A window into a world that we can't understand. I have learned from him in the posts he made on this thread and others and I have responded to him with love and appreciation.

When he talks about his fear that another person, possibly jealous of your attention to him, might cause you to abandon him and send him away, I don't know if I can tell you how meaningful his words are. I don't know if he remembers that feeling the next day, but if the situation surfaces again, I'm sure his response would be the same. I'm not sure if he actually experienced that or if he was just empathizing, but it came from his heart.

Like others, I will say that Ladee is probably the one person on this entire site who has never said an unkind word to anyone. Granted, she needs to proofread, especially when speaking to your dad, but she is a dedicated and loving caretaker to many people who have dementia and she loves her patients with all her heart and soul. Your dad is telling her about the world her beloved patients live in and anything that can help her better understand and bring happiness into their lives is someone she wants to listen too.

I love your dad and I know Ladee and others do too. Can we start over? Can you help your dad set up his own thread. " I have dementia, I can't remember yesterday, but I can tell you what that is like? Or any title that you desire. Have your dad type in some of the things he has shared. The smiling face that he can't understand each morning when he looks in the mirror. I can't begin to tell you how much his experience and understanding of his experience means and will mean to all who read his posts.

Ask anyone responding to his question/discussion to carefully proofread their responses. It might be good if you reviewed them and asked for clarifications if you feel that is best. We all are dealing with stress and we all make mistakes.

I don't know if you or your dad are up for this, but I think his personal thread will last for years to come and give many people who are trying to do the right thing by their parents an opportunity to see into their world. Not only will the caregivers thank you both, but the parents will too.

Please let us know what your decision is and let your dad know that he is very loved and respected and cherished. You are too.

Love, Cattails
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Please Meno and Daughter reconsider!!! I found this site in April when I was in a very low place mentally. I can truthfully say the care and concern given to me carried me through when I thought I could no longer go on. I have not posted in a little over a month, I think because I was feeling much stronger and was also trying to choose not to dwell so much on the daily issues of my life. I have checked in everyday and read what was going on with my new found friends, but I have kept silent. It was Ladee's recommendation that everyone check out Meno's story so that we may have insight into what it was like to be your world. There is so much to be learned. My mother does not have dementia that I am aware of, but I see her short-term memory slipping. Just your writing your story I found fascinating and thought what a great book you could write. I don't know if you have realized that your impact is not just in talking about "dementia", it is truly a story of Love and the depths of Love. Just as I am thinking I have given much and shown enough love, your insights showed me that there was more to consider and I found more love inside me to show to my mother. You see your words are having a most powerful and profound ripple effect. It is impossible to see how many lives you are touching with your knowledge and sharing. I just have to tell you Ladee is the most loving, understanding, supportive, compassionate, hilarious person on this site. She was one of the first to lift me up and help carry me through my rough times. I know she is probably heart sick for the mistake in typing. I do hope you will reconsider and continue to share your light in the darkness so the rest of us can find well springs of love and compassion that we did not know that we were capable of. Much Love and Light to the both of you, and may God pour his blessings out upon you. Vivian
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Menos Daughter, OMG, it was it a typo, I am sorry to the core of my soul... I would never hurt you dad, I have nothing but admiration and respect for what he is sharing with us..... I want desperatly to know how the person with this ..... I don't even have a word for it... disease feels, thinks and perceives the world around him.... All I can say is I am sorry that I am so tired I did not proof read before I submitted it... please accept my heartfelt apologies,,, I would NEVER hurt your dad on purpose... it was an honest mistake....
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Menos daughter....i can assure you that Ladees post was made in error. I know she feels terrible for the misunderstanding, n i'm sure that it would hurt ur father. Ladee would never do such a thing to anyone, on any thread. She is one of the most compassionate n sensitive people i have met on this thread. Her words have been invaluable. There have been many times that i have typed a post incorrectly, bcuz my thoughts were moving so fast. Please, do not take her error for truth. She is a wonderful woman, n wants only the best for ur dad. She very much wants him to continue to post here. She will b shattered wen she realizes wat she actually posted...i assure u. We have all made posting "errors" on these threads n this was absolutely one of them. God Bless u both.
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I have taken my father off of this forum because he was not trying to hurt someones feelings. Ladee. My father is incapable of deliberate calculation. Your sentence: There is no doubt in my mind that hurting someones feelings was your intention would have devastated him. this is why I took him away from the forum. He takes everything in black and white. He does not have the ability to consider whether or not your sentence was an error or if you mean what was written. Re Read your post and just out of curiosity I am wondering if this was a sentence structure error or if you feel he wanted to hurt someones feelings. Thank you. Menohardys Caregiver.
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Meno.. You are not responsible for hurting anyone's feelings.... we are all grown ups here, and we can get over it, and try to learn what you have to teach... I only take care of people with Alz... I know of many things that you speak of, but you have so much to teach us... we are each responsible for our actions or reactions... please , would you and your daughter reconsider????? There is no doubt in my mind that hurting someones feelings was your intention.... you were talking from your place in this life... many of us are learning so much from you... please reconsider..... hugs to you and your daughter..
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Meno n daughter....PLEASE do not leave this forum! To quote, partially, ur last post,
"It is an action that will produce a bad result." At least, for many of us. We have already learned so much about the patient n caregiver relationship thru ur posts, as well, i believe that u have gained some knowledge for urself thru the very brave n courageous caregivers who have opened up their lives to u thru their posts. There is no right or wrong way to respond to anyone who posts here, but there is a kind n gentle way that i believe everybody deserves...a way that treats us all with mutual respect. We can learn so much from one another, n b a support to all who post here..that is wat this thread was designed to do. No 2 stories will ever b alike...but the similarities r wat we share. U bring to this forum,very valuable insight from the perspective of one who suffers from dementia....others bring valuable insight from the perspective of the caregiver...Both sides,equally exist, therefore, the reason we r all here. It is never easy to open up to ones personal struggles n tragic circumstances to complete n total strangers...but we still do...bcuz we NEED a place to go n vent to those who we feel will understand, without judgement or criticism. A place that we can all feel safe to express wat ever we r feeling. To leave this thread, Meno, would b a great loss to the many caregivers out there who can learn so much from the "patient." As for u, i believe it would b a great loss, bcuz u r able to better understand the feelings n emotions that so many caregivers go thru, including ur wonderful daughter.There is so much to b gained by u n others, if u continue to post....n there is an incredible loss that will exist, if u leave.. Please...i hope that u n ur daughter will reconsider..We need each other...God Bless,Meno...n ur courageous daughter..
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Menohardy~This your forum and you set the ground rules. If you want this forum for people to understand the patients side of dementia then people who post should not use it as their forum to explain their situation. There are other threads on this site regarding dyfunctional families, narcissistic parents for those of us dealing with those issue to discuss openly. Having your point of view as a patient is valuable to all of us. Please reevaluate your decision and continue to post♥!
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My daughter told me to tell everyone goodbye because I have hurt someones feelings and I do better talking to my nurse and her and I say things that people do not understand. so goodbye everybody I was happy to meet you. Be good and remember love can bridge any gap. My grandmother embroidered a sayin that hangs on a frame on my bedroom wall. It reads: Good thoughts and actions can never produce bad results; Bad thoughts and actions can never produce good results. , I mean me
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golfbhard. Are you addressing this to me? I hope so because you sound like someone who is a similar condition as myself. I am diagnosed with dementia, Alzheimers with big words in front like supra, subcortical. nuclear palsy and demented idiot, savant, retard. Those last three are big hurtful words. I have one passive son and one daughter who cares and another who wants me put in a hospice. I found this site because I am wealthy and was not sure if I can spend my money on what I want or on who I want and ended up talking to people who are caregivers and I think they have problems. I think most are non professional and they do not really understand what demented means and the levels that there are associated with dementia. I have a loving daughter who has protected me from being put in a nursing home. I understand my condition will worsen and the time will come when that will be best for me and everyone else. I see a Palliatrive care Psychologist who has helped me and her and even my passive brother understand what is going on. I wish all care givers would learn how to take care of us and realize that we are all different. Sometimes I cannot remember from one minute to the next and other times I remember very well. You seem quite able to communicate./ I feel bad that you are being treated this way. Please tell me about your situation if you can. I was at a point when I almost was sent away but my caregiving daughter found other resources that helped her understand my conditions. I also learned that it hurts my children to see me this way and that is why they get angry or upset. They think there is nothing they can do but they are wrong there is alot they can do and the 1st thing is for them to understand that love can hold back time. That is all that I ask for -love. If I had a child that got hurt and was brain damaged I couold not put my child in a home if the doctor told me I couolld learn to care for him or her myself. What kind of parent would do that to their child? Just because we are older and bigger we are still human beings who get lonely and don't want to be with strangers. I tell my daughter give me this day. I have it on my wall and I ask her every day. It is on my wall so I do not forget to ask her. I told her if I ever forget to say thaank you to point my eyes at my reminder and if I do not know what it means then maybe it is time to put me somewhere else. I sense alot of hurting people on this forum. Mostly daughters caring for thieir mothers and going back to issues from long ago. Daughter has a book called If only I knew. She must have it because I cannot find it. I cannot remember any of the verses or passages but she said it helps her to think straight. I clearly remember my doctor telling her to get it and ever since sahe did.
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Thank goodness you have loving kids, my daughter doesn't want to hear any of it. I have no sounding board. She just says "put her in a nursing home". Like that wipes her off the map. She told me not to expect her to take care of me. I even have to pick out my own nursing home (before) I need it. .
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Libracat from the viewpoint of a patient I feel like you and Marciwriter would leave me-that is what I felt when the words "Get out of Dodge were written. In defense of my post first I must apologize for being so direct but I know no other way. I fed my posts into my Fax that goes directly to my Psychiatric nurse and was answered with a quote from a book by David Shapiro-author of Neurotic Styles-A caregivers handbook would be of help in petty dispute. I cannot retract my statement because after re-reading the post from Libracat and reviewing the posts of Marciwriter I stand by them. I can soften the words. But I cannot be dis-honest. I would like very much for Marciwriter to understand I mean no harm. I am a Patient advocate and fortunate to have a caregiver who loves me. She will not allow me to abuse her or my grandchildren verbally, physically , passive aggressively or in any way and vice versa. I asked Libracat to shed some light on why she would leave her children with a serial abuser. I did not get an answer. Instead, and tell me if I am wrong, you and libracat spoke on this issue by message. I asked several questions of libracat. 1. why would she leave her children with a serial abuser.
2. why do you find your mother capable of arranging for her meals irritating?
3. who paid for the bathrooms to be re-done. If your mother cannot refrain from abusing your children arrangements must be made to guard them-protect them.
How does her meal arrangement effect you? Why are you the only one who sees a problem. Your husband and at least one of your children have taken your mothers side. Am I wrong? I am not wanting anyone-especially caregivers to think I am mean. I apologize for my accusation of libracat being jealous. Poor choice of words. Maybe if you would not say things like it is time to get out of dodge or instill fear by saying if Mom doesn't comply fully it is time to put her away I would have answered differently. A caregiver in my opinion must not put up with abuse. I have said this in many of my posts- my daughter says to remind you. Libracat. You have issues that will only get worse if you let them. And no Marciwriter you know I never intended to excuse her mothers abuse because that was the way it was done in the old days and you know this. I was making a point. If the mother was abusive to her she will be abusive to her grandchildren-so how could libracat trust her young children alone with her? I think with less than half a brain but most of society thinks with less than half a brain. My daughter calls my tantrums senior moments. We go to the tabvle with my nurse and my sister-I mean daughter once a week. I do not like baths because I am embarrassed and the water hurts my skin and I want a filter to soften the water and I cry and cry and get mad and want to scream because no one understands that baths hurt me physically and mentally but I know I have to have them unless they let me go live on an island like I want to but this is my dream not going to happen. That man who comes to visit my daughter is jealous of me and I hear him talking to her sometimes about putting me in a home-he thinks I am demented and crazy and does not like to look at me. My daughter tells me she will not leave me so I try to be good. I think if Libracats mother was talked to and explained to she might soften. I just do not understand why you would deny your momma her meals. Is it money? Is it taking something away from you? Help me to understand. If you were my care taker I would ask you why? Has she asked you why? Have you educated her that times have changed and we do not hit children for any reason? If she can arrange to have her meals delivered she should be able to understand that being mean and bad only gets you put somewhere you may not like. If you were so abused that you still carry the emotional scars you need to see a therapist to help you put it away so you can forgive and maybe see your momma as someone who needs your love. I am sorry if I hurt you. I wont post anymore if I hurt anyone. I only want to help patients and caregivers
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marciwriter forgive me for taking so long to answer but I finally got help to find what I wrote. I think I asked a question about the bathrooms to find out who paid for them-not to criticize and I believe I was using the point that in her mothers era children were by todays standards treated abusively. Does that make sense? I have no help this time so it is hard. I keep going back to look at what said and my answer goes away but I will send this and next time go back and take notes-before I submit the rest of my answer. Before I do I looked up at your post and you wrote libracat was devastated by her mothers abuse. I an sorry-you said "crushed"-this opened a door in my understanding the need to understand why she would leave her children with someone woh was an abuser to her in the past. I would never attack anyone but I will ask questions the only way I know how. My questions are only that. Now I feel bad because I do not want to hurt anyone. I have to go back to the part where I said I thought Libracat is jealous and I hope I do not lose this thread
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Libracat, thank you for your words. I understand completely the frustration you are feeling. I think at some point when trying to care for an abusive, elderly parent, the caregiver can become so "beaten down" that for their own emotional and physical welfare, they must leave the situation. Yes. It can become toxic.
menohardy, I always respect what you have to say, especially because as a
dementia sufferer you can give us, the caregivers, valuable advice. But, I think you are being rather hard on libracat. If she feels emotionally devastated and crushed by her mother's verbal abuse does it really matter if she paid for the bathrooms to be remodeled in her daughters home? Also, does it really matter
that physical abuse was acceptable in "her era?" The fact that her daughter still suffers from the mental scars of that abuse definitely does matter and affects the way she interacts now with her mother. By the way, I don't think that Libracat actually meant she walked away and left her mother to be neglected. What I think she meant is that, at some point, the caregiver must walk away from an abusive
parent when the words coming out the parent's mouth are so painful that to stay
poisons the caregiver. I am only now learning to "walk away" when my mother starts her vile comments to me. I must save myself at some point and so should Libracat. By the way, with all due respect, I don't think Libracat is jealous of her mother.
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Menohardy~Wow, You have an insight and an incredible love for humanity! I can only say that you are teaching us all much more than just understanding your side of the patient's view, but the love and compassion that is within you. My father passed on December 27, 2003 from Alzheimer's Disease. I visited him 2-3 times a week on days and times when I knew my mother would not be there. The reason for that is because my mother has a mental illness (Paranoid Personality Disorder). If she were there when I visited, all my attention had to be focused on her instead of spending time with my dad. I can completely relate to what you said about how the the person with dementia can hear what you are saying but cannot respond. One day when I was visiting my dad, he sat in a chair sleeping the whole time I was with him. I told him how my children were doing and about other family members. After about 30 minutes of me trying to talk with him as his chin hung to his chest, I kissed him and told him I was leaving. As I got up to leave, he said, "Don't go". It took my by surprise because I did not think he heard anything I had said. So I sat back down and we had a nice visit with him awake for about another 20 minutes. I cried all the way home because I realized then that even though he didn't always respond to us, he knew we were there. I cherish that memory of my father.
My mother is now 83 and has Alzheimer's. She is still abusive but I know the difference between her normal personality disorder and the Alzheimer's. She lives alone in her home and is able to care for herself at this time. I learned many years ago to detach from her emotionally so I can handle her abuse better than my sister and brother. She will never live with any of us and will eventually be placed in a nursing home. Her abuse is just too much to have her living with us. Our goal is to allow her, her dignity and to live as independently as she can for as long as possible and that includes having home healthcare when the time comes.
Bless you Menohardy and your daughter and I look forward to reading more of your posts!!
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Meno..first let me say, for a 63yr old man with Dementia, ur words r so profound, n leave the reader pondering about what being a caregiver, really means. To give all of us such a personal journey into the world of someone suffering from Dementia is truly invaluable....n i am so grateful n priviledged to read ur posts,,,thank you

I am the caregiver for my 82yr old father, who suffers from this cruel disease. I say that, bcuz he asks me, frequently, why does life have to b so cruel. It breaks my heart every time he asks me that question, bcuz i have no answer...i dont think any of us do.

My father was a very successful stockbroker for 40yrs, the last 10yrs, being the V.P of the firm. He was strong, in control, n the hardest working man i have ever known, even to this day.As a father, he was never "abusive", but still instilled fear n intimidation with just a look. He expected perfection from his children, as many do, n he was always treated with the utmost respect, n his voice, alone, demanded it. He was never an emotional man. He told me he loved me for the first time only 5yrs ago..i am 53. My father has always been a very wise n worldly man. He taught me to love the piano n classical music. He opened my world to opera, n ballet..he has always been my mentor, even thru this difficult time of his life. My father means everything to me, n to think of my life without him, is inconceivable.

Through this disease, i've watched many of these qualities disappear, n become embarrassment, humiliation, anger n frustration. He is a man no longer in control.
With that, i have also seen many qualities that i have longed to share with dad all of my life. He's become emotional, which is a wonderful thing to witness n more expressive with his feelings. He lites up wen i walk in the room...as do i. He's humble, n really listens to me wen we talk, n he has become completely dependent
on me, which he is most ashamed of...yet it is one of my greatest joys to b here for him.

I cant bring myself to get angry or impatient with him wen he's repeating himself, calling me 10-15 times a day, raises his voice to me in frustration, or needing me to hold the urinal while he tries to pee..This is now my life. I look at him thru the eyes of compassion n empathy. I look into his eyes n see a man who is sad, lost, n confused. I try to b there in his world, at those moments. I have learned not to bring him into mine, bcuz it distresses him greatly. If dad calls n says hes on the beach n needs to help a drowning victim out in the ocean, which he jst did, i jst help him thru it. I have dealt with these episodes with a calm approach, bcuz that is wat gets him thru it. I have 3 siblings that r out of state, so they r not able to help me, but i believe with all my heart, that i was the one that was meant to care for my father. I know my siblings wish they were closer, but they keep in constant contact with me, n they know that im caring for dad for ALL of them. There is no animosity...what purpose would it serve.

I know that not all who r caregivers have a past with their parents as i did, n my heart breaks for those who have suffered thru verbal or physical abuse growing up.That would b a very difficult path to navigate. I suppose my point in this rambling post is, I still, to this day have the utmost respect for my father. Above anything, i want him to have his dignity...he has certainly earned it.

Meno...as u said in one of ur posts...there will b a day wen his voice is silenced. That day will forever leave a hole in my heart that only dad can fill. I cherish every moment that i have to spend with him. I understand, to some degree, ur comments about a family caregivers responsibility. I will endure as much as it takes to care for dad, leaving him with as much dignity as he deserves. He's still teaching me so many things. He's teaching me about humility, loss n the fragility of growing old. He is n always will b the greatest hero in my life. Even dementia can bring blessings...u jst have to pay attention. God Bless you n ur wonderful daughter.
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ladee-my daughter told me you apologized for calling me a lady and I did not or was not able to understand the difference because I am focused on the rest-or the content and now I am confused-but I will try to work thru it as I address casey 1234. I asked how to start a new thread and my daughter wants me to learn so someone will help me. Your father must learn he needs help and who but to teach him but you. You have taken the time to ask how. I have taken the time to ask how. my answer to you is how can you hep someone who needs help but does not want it? You see what the needs are and provide them. You call an elder law attorney. If he was your child and needed help you wouold do it. Yes? Does he have dementia? Does he need care? Then you will find a way and not let him tell you no. If he is mentally competent and wants to drink himself to death then you cannot help him whether he is 21 or 110. You must prove mental incompetence.
Just because someone is 70 or 80 or 100 does not mean they cannot decide they need or want help. If you feel he needs help then you must state why and prove it.
My grandchild needs her diaper changed and I am not demented enough not to know so I told my daughter to stop watching me and change her diaper because I can smell better than I can spell. If your daddy truly needs help what are you waiting for? Help him! We are our brothers keeper. We help our loved ones no matrer what. Sometimes that help is too much for us so we have to call in the professionals. Even if the professional says your father must go in a Hospice or a nursing home you still must visit them or him if you care. An old person is angry for many reasons. They hurt. They are angry that life is so cruel to them. They want to say I love you but cannot make the words come out right so you hear them moaning or making odd noises that drive you nutts because you do not understand their pain and their loneliness. You take them to the dr and the dr says it's all in her head-well I ask you -is not their head a part of their body? or if their dr says it is just in their mind-is not their mind a part of their body? so does it matter where the pain is? In their toe or in their brain-to the patient it is pain just the same so listen to them!
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Libracat I have just finished reading a text my Psychologist gave me for this forum since my sis-I mean my daughter told him I have interest in teaching Caregivers the differences in dementia an AD including the levels of cognition between patient and caregiver. I read your story and feel your frustration but noticed some contradictions. You said several things that waved the red flag. The first was saying you could tell us some things about your earlier life with mother but wouldn't go into it-I think you should go into it because then that would explain why you let your children be around what you believe to be an abusive person to children.
I think she was abusive to you which was the norm in her era. So if you took that as abuse why would you dare leave your children in her care I suffer from dementia and some people wonder how I can write on the subject if I suffer from Dementia. These same people will say that the demented are smart enough to finnaggle?. My answer is yes, they are and do all the time. But so do the family caregivers. How long ago was it when grandma abused your children? My daughter is reminding me that her grandparents on both sides used the belt. Now a days we use drugs on our mis-behaving children to make them behave. My Psychologist writes down instructions and records our visits so I can review my visits and my daughter is playing a tape for me now titled: How family caregivers manipulate their aged parents into acting out in front of their doctors to convince their doctors they are in need of care. In the time of my grandparents grandparents were heard. If your children are mis-behaving how do you handle the situation? When little Johnnie or Mary is throwing food at the table do you call them demented and send them to their room? Do you get out of Dodge as you put it? No. Or at least I hope you do not. So why do you mis-treat your mother. If she is demented do you just walk away and forget about her? Then I feel sorry for you and maybe for your mother this would be the best thing for her because you sound like the abuser to me. I would bet her money paid for both of your bathrooms to be equipped with handicapped equipment. What else have you benefitted from by your mothers condition, I am wondering? If your mother is entitled to a bathing lady why can't she have one? She is 87 and all her other senior friends have one. My daughter does not bathe me. How would you like to have your children bathe you?
Your husband is right. I think you are jealous of your mother. So what if she is capable of arranging her meals brought to her. You are telling someone else to get out of dodge...move away and find a place for you and let the chips fall where they may. That sounds counterproductive. Have you ever had a troublesome dog and took them off and dropped them somewhere just because they are causing you problems. Tour mother sounds pretty healthy minded for 87, especially if she is able to convince your husband and daughter that she is not a bad person. I think you have other issues and counseling for yourself would be a good start so that you can learn to be a caregiver or Get Out Of Dodge, but leave mom alone with a thoughtful son in law and granddaughter. No one should have to take abuse and that includes the patient.
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Hi MarciWriter, boy can I identify with you.....and I know exactly what you are saying, and where you are. I had the same abuse (verbal and physical) and even though my mother is 87 and lives with us now, the verbal part still continues.
Somehow she feels entitled to put in her two cents on everything from how I decorate my house to how I treat my granddaughter......of course these things are none of her business but she does it anyway.
I could go on and regale you with horror stories of the things that happened to me in childhood, but it wouldn't do much good. I learned early on to separate myself from these things - but I could only separate from my mother for so long as she wormed her way back into my life when I got married and had my children.
She was fortunate in that I wasn't so hard-hearted that I would not allow her the pleasure of grandchildren, but she abused that also. She took it upon herself to discipline (hit) them whenever they went over to her apt. (I just recently found this out) and the guilt from that hit me like a ton of bricks.
You MUST remove yourself from this toxic person/personality - I have just lately discovered my own strategies of dealing with her constant negativity and complaining: tuning her out, changing the subject, pretending I don't hear her -- but it is very, very difficult to change someone (if not impossible) at her age, someone who has spent a lifetime crafting their manipulation and deviousness and perfecting their evil, sarcastic, cruel comments and remarks.
I, like you, have no support because she is clever enough to have wound my husband and one of my daughters around her little finger (as well as countless doctors) so that if I complain to them, I just get shut down. My other daughter sees the tricks, lies and games she plays (thank goodness) but does get very tired of hearing about it. My sibling is no help, contributes not one penny to my mother's care, and is totally off the hook where she is concerned and will visit maybe twice a year. Of course he is excused by my mother who says "he works and you DON'T" to which my answer was, "and what do you think taking care of you is?"
We took her in out of the goodness in our hearts, only after she had finagled the doctors (through various academy award scenarios and hospital emergencies) into telling us that she was unable to live alone and do for herself. That was a crock. She had a system set up for herself in her apt. that allowed her to have various people bring her coffee and donuts in the morning, cook dinners for her and leave them on her doorstep, do her laundry, bring her mail and newspaper, etc.
You cannot underestimate the lengths these types will go to in order to get their own way and what they want but you CAN devise a life for yourself that will include either minimal or no contact with them. I so regret the day that I allowed her and her toxic behaviour back into my life. In fact last night when I said to my husband, if I, with a broken leg, can manage to get into the bathtub (both bathrooms equipped with handicapped equipment) to shower myself then why can't she do it? He snapped at me: "She's 87! What if she falls!! Leave her ALONE!" Oh, so I couldn't fall too? Her reasoning is that she is "entitled" to having a bathing lady, because all the other seniors have one so why shouldn't she, whether she needs it or not?
The only way you are going to have a clear road ahead - for YOURSELF - is to get out of Dodge......move away and find a place just for you and let the chips fall where they may.
You have done enough and deserve better for yourself. When you said "beaten down", this is a phrase that I have used many times to describe my feelings, so please know that you are NOT alone in this........many of us on here have been caught in the traps of the narcissists but there are ways to get out, and I'm working on mine right now.
Good luck and prayers to you.
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Thank you all for your words of wisdom and for sharing your similar experiences.
It really does help to know that I'm not alone and that there are answers for how to deal with a seemingly torturous problem--caring for an abusive, elderly parent.
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