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I am on only child, caring long distance for my Mom. Her health went from bad to worse in 2010 after she called me experiencing what turned out to be a brain hemorrhage. I traveled to be with her and care for her for 3 months. She ended up back in the hospital two weeks after I left. Evenutally this led to her being placed into a nursing home. Initially we were set up for assisted living and she backed out at the last minute. There are no friends or relatives to help. She cannot travel across the country. I am unwilling to give up my home and move to be closer to her. I do not travel well myself. I call her every day or so and each day the conversation is the same.She says she wants to get out of there, she hates the people there, the food is awful, she will not let anyone touch her and she wants a place by herself. She has always been somewhat reclusive and because she feels so poorly, I know she is very emabrrassed about how she looks and feels.

I have hired an elder care nurse who is wonderful and sees Mom every two weeks. Her regular doctor felt a nursing home was the best option for her, because she wouldn't let anyone in her home to assist her with anything. She didn't even want me there and had a psychotic break over me being with her. She does appreciate some of the things I have done, but this is not how she pictured her life in her old age. She feels she has been stripped of her life and I have to admit that is probably true.

She is 91, suffers with dementia, behavioral dilusions, develops blood clots (has a vena cava filter to prevent problems), has really bad osteoarthritis and has short term memory issue as well as aphasia. Now she has not let anyone touch her for over a year, and her toenails are so bad, they are grotesque. She has anxiety and depression and paranoia (getting meds for this). They finally got her into the beauty shop to cut her hair and she was very upset that they "violated" her in that way.

She will interact with her roommate and others and she seems to save her worst moods for me. Guess she feels comfortable with me.

Today, was like most. She just wants to die because she is so miserable and she hung up on me. I have talked to the social worker, her elder care nurse, and friends. I wish I could make all her wishes come true, but I cannot in good conscience give her what she wants, which is her freedom and the control she used to have. I am at a loss and feeling overwhelmed and sad. Now I have total control over her finances and all the other things I should have.

Back to my original question.....am I doing enough and if I am not, who will tell me?

Thanks for listening.

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You have no other choice but to have your mother in a LTC facility, let's face it. Yes, you are absolutely doing the best you can. My mother has been in an ALF for the past 3-1/2 years with many of the same issues yours has; the IVF filter, the blood thinners, the dementia, etc. She chronically complains about the food *they ALL do* and about a million and one other things, but it's not my fault, you know? I can't 'fix' this old age situations she's in *just turned 91 yesterday* and have enough of my OWN issues to deal with! I call her 1-2 x per day, and usually take her to dinner on Saturday nights. The ALF tells me I'm doing TOO MUCH, so take solace in that, dear woman! There is only SO much any of us 'children' can do for our parents.
Best of luck
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My mother is living with me now and I also feel like I'm not doing enough because she is so unhappy. It helps me to know that she has always been a negative person, and she has lost pretty much everything that she valued due to being moved here and there. On some level she knows that she is having "issues" but she denies them fiercely and I'm sure her dependency irritates and frustrates the heck out of her. So I try to console myself that no matter how much I do, she STILL has every right to be angry at the hand life has dealt her. That doesn't stop me from trying to get her to laugh and turn her negative outlook on life to a positive one, though. And I'll tell you what... the next time a docs office schedules a fasting blood test at 11am, I will pitch a fit myself because that is causing a meltdown like no other right now! LOL
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They experience so many losses in old age - I see how depression sets in. I dont look forward to aging. I dont want to after caring for both elderly parent alone. I know this does not help - but I can't change how they feel in doing a lot for them. They are blessed to have one another. I stand on the periphery and wish I were loved in this family the way they are. I know it is hard for you. I know it is hard for your mom. I wish there was a simple joyous solution.
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Joyce W, I wish I had an answer for you. Let me put it this way: My mother has what many would consider an ideal set-up, and I STILL feel that I'm not doing enough. She has excellent care, is living in her own home (with me on hand every day), has her hair and nails done each week, has PT and massage therapy four times a week ... I could go on, but the long and short of it is that 1) she is not happy, and 2) I still feel that I am not doing enough precisely because she is unhappy. We all want our parents to be safe, comfortable, and most of all happy, but the last one is difficult and often impossible to achieve. There is usually one moment in each day when we can get a smile out of her, so I try to be content with that. But Lord, it is hard! God bless!
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I think you are doing the best you can. Sometimes the situation is like the proverbial rock and a hard place, damned if you do/don't. "What if...' can only torture and torment, nothing you need at this moment. Sometimes, when the process is slow, it strikes me as an abomination...why can't they just slip away in their sleep...and there is nothing we can do, short of providing comfort. Hang in there.
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I TAKE CARE OF MY UNCLE AND BELIEVE ME THAT THE PATIENT HAS A RIGHT TO SAY NO ALRIGHTY AND HE EXERCISES THAT RIGHT TO THE FULLEST EXTREME! HA! He says that he has made so many mistakes in life and that he has never been happy! He never answers just yes or no, and the conversation tends to get diverted to something that had nothing to do with what I asked him! Then sometimes he'll break into song, he'll sing a verse and then I'll sing the next, and so on! He's good at changing the subject when we are discussing what's important! He was the boss when I worked for him on his farm but now I kind of have to be his boss but I don't ever let him know that! So I act like he is still my boss! He is 90 now and he is still waiting for his golden years! He says that there is no golden years and I believe it! He sleeps in his recliner chair so that he can get up to his walker which took falling and breaking his nose to use! I tried to get him to use for two years before he did use it! He lets me give him a bath now twice a week instead of once now because he was getting yeast infection under his arms and in creases! I help him be in control of whatever he needs and I let him know that I'll help him be that way! If there is something that he don't want to do that is important, I tell him that the doctor said that he needs to do it and he goes along with it! I call him every morning to make sure that he is alright and if he needs anything I'll get it but I make sure that he has everything on Monday and Friday when I drive the 75 mile round trip. So far it's all working but I wish he could sleep in his bed!
( I would never consider using pills to get him to do something.)
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I posted this recovery reading on my blog today, and thought it appropriate to share here:
The Language of Letting Go
Responsibility for Family Members

I can still remember my mother clutching her heart, threatening to have a heart attack and die, and blaming it on me.
—Anonymous
For some of us, the idea that we were responsible for other people's feelings had its roots in childhood and was established by members of our nuclear family. We may have been told that we made our mother or father miserable, leading directly to the idea that we were also responsible for making them happy. The idea that we are responsible for our parents' happiness or misery can instill exaggerated feelings of power and guilt in us.

We do not have this kind of power over our parents - over their feelings, or over the course of their lives. We do not have to allow them to have this kind of power over us.

Our parents did the best they could. But we still do not have to accept one belief from them that is not a healthy belief. They may be our parents, but they are not always right. They may be our parents, but their beliefs and behaviors are not always healthy and in our best interest.

We are free to examine and choose our beliefs.

Let go of guilt. Let go of excessive and inappropriate feelings of responsibility toward parents and other family members. We do not have to allow their destructive beliefs to control our feelings, our behaviors, our life, or us.

Today, I will begin the process of setting myself free from any self-defeating beliefs my parents passed on to me. I will strive for appropriate ideas and boundaries concerning how much power and how much responsibility I can actually have in my relationship with my parents.

From The Language of Letting Go by Melody Beattie ©1990, Hazelden Foundation.
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Joyce, I often ask myself the same question. I believe my mom to be inconsolable and a "yes, but-er" who resists opportunities to feel better and people to provide her comfort. The longer it goes on, the more at risk we are of developing compassion fatigue. Trying to do it long distance is even more of a struggle and worry. It's like the cell phone, the more you use it the lower the battery gets and you have to recharge it. Or sense of smell, exposure to the scent over a long period of time renders you unable to smell it because the olfactory senses are fatigued. Add the fact that there is no immediate, positive feedback on what you do for her combined with a negative world view, it is understandable why you feel you have failed in some way to do the best you can to make your mother happy. Was she always like this or is it a personality change from the dementia? I can tell you that I have stayed home with mom for the whole month of July except to go for the groceries and to church, and she is still complaining about being alone all day, every day. At some point I have to set boundaries and limits.
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I do believe that 'man' needs a purpose and not too much relaxation and this is what happens as we age. Some elderly do not cope well 'sitting around' and life has not worked out as they initially envisioned. It just is. Nobody gives this much thought when we're young and I think it's a bit of a shock. That said, there is only so much we can do before exhaustion takes over and there is little left to give. My experience were that I eventually shut down the 'past' topics and decided that if I can help provide what my parent/s need in terms of a roof, food, clothes and 'maintenance, then that is where it stops. They have what they need and should be happy that a child still looks out for them. I do not have to entertain all their miserable memories, because I cant erase it. Therefore, I do not give them a platform to voice it and choose to make my life and theirs happier by changing the subject and looking ahead. My dad did not like it at first, but it is all I can cope with and it was all up to me. He stopped with the nonsense of whining and demands. What a change it was for the better.
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JoyceW

I have been right where you are, down to the call hang-up. I also am an only child and was in this situation with my father. He latterly distorted a hospital room because each doctor that saw him he fired and I would rehire. It seemed to me, no matter how hard I tried to help it was wrong or of no help to him. What is an only child to do? There simply is no one else to help.

My dad would call five and six times a day then hang up on me if I answered. I did move from one city to another to take care of him. What could I do? I tried everything I knew and I seemed to always to be doing just the thing he did not want. After many months I was advised by his doctor and his attorney to get a Guardianship. They explained that he would not just be allowed to ‘fire’ any professional necessary to treat his health issues.

My answer came by way of his clergy; I would go away for two days to get a fresh prospective on this situation (no cell phone at the time what a blessing). After much thought I began to see 'it is impossible to reason or even talk to someone who is in this condition. My resolve after these two days was to: 1. I would look back on his wishes earlier in life when I believe he was in a best place or right mind to distinguish what he would want. This was mostly founded on his experience with others he knew in this situation he was now in. My decisions would be ruled on his past wishes. 2. I weighed every decision on a scale of how I would face myself later after he had passed.

Using this process I know I did the right thing for my father. This is not to say this strategy will work in every case however it is something to consider. My profession now is a Geriatric Case Manger.
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My mother, 89, is a true narcissist and, as a result, is never happy no matter WHAT. At nearly 59 years old myself, and an only child (adopted), I've spent most of my life trying to do the impossible: make her happy. It's not possible, and it's taken me 50-some-odd-years to finally figure that out! She crucified my Dad, who passed last June, and she still talks badly about him, believe it or not. I mentioned my husband had gone to the movies yesterday, which spurred on a memory and story she repeated for the 200th time about how terrible it was when my Dad took her to the movies about 6 years ago. She fell down and he didn't even notice, if-you-can-imagine-the-nerve. The story before that one was about how Dad had 'prevented her from doing all the things she loved to do before she met him'. She lives in a $4,200 per month ALF, in an apartment that the director uses as the 'show home model', she has a wardrobe fit for a queen, has tons of visitors and phone calls, is taken out for dinner on a regular basis, and on & on. And still, she dwells in misery. Is it 'my fault'? Nope, it certainly is not. I've been there for both of my folks every step of the way, and I was with him right up until he died. I'll be with Mom as well. Women like turn Guilt into an art form. No matter what I do, it's never quite 'enough', so I can be left to feel guilty or I can recognize what's happening: that I'm being played like a violin. Unfortunately, there is no 'answer' to the dilemma we face, as children of women like this. I love my mother with all my heart, but God forgive me I DO NOT like her.

I wish you the very best of luck navigating through the muck & the mire known as old age, dementia, possible narcissism, and everything else that goes along with being a daughter. Try not to punish yourself for what you're 'not doing', and start loving yourself for what you ARE doing. It IS enough.
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Peace and Blessing Joyce, I pray all is well with you and yours.You are not alone and you are doing a fantastic job! The dynamics involved in caring for a loved one are complicated, add Dementia and or Alzheimer's and it becomes incomprehensible for most of us because of the constant roller-coaster of behavior and emotions that present themselves.

Here is where your faith really comes in. Look at the practicality of what you are doing, she cannot take care of herself and you are taking care of her, there is no price or value that can be placed on the personal sacrifice one human being makes for another, know that what you are doing is the ultimate gift of love, it is the ultimate sacrifice, those who know her and still interact with her know deep down that she wouldn't be here if it weren't for your valuable assistance. Making her happy is a futile undertaking however. We cannot maintain another persons outlook on life, all you can do is your best to provide the things she needs, her wants and don't wants or likes and don't likes are what you cannot control. I am in the same boat and deal with ungratefulness and being unappreciated everyday. They do become comfortable with their caregiver to the point that they let it all out emotionally. I get the angry, depressed, unenthusiastic, resistant and argumentative person, everyone else gets the warm, friendly, exited, enthusiastic and very grateful person. This is because for Dementia and Alzheimer's sufferers, appearance is everything. They are fighting the disease and are often confused about what is happening to them but they want to appear as normal on the outside. This brings out all sorts of emotions and is an exhausting process that is always taking place in the background of a Dementia sufferers mind. They have to use so much energy when in social situations and around others in an effort to present themselves as having it all together, that when they are finally at home alone with "just" the caregiver, the emotional breakdown and release can come out in many forms. Another dynamic is the fact that as caregiver's (care providers), we are the ones who represent the doctors, the nurses, the pharmacy, we are the ones who have to say "no" to sugar and salt and other things detrimental that they may want, we are the ones making them bathe, stay hydrated, eat right, keep moving etc, this builds animosity over time and soon we are not family anymore, we have become the "bad cop" so to speak subconsciously for them and they unknowingly treat us bad. Lately however her behavior is coming out at Church and other places and people now know my sweet, innocent, saintly, Christian mother has a pair of horns and a tail! LOL I knew all along but everyone thought I was crazy. But that's also part of Caregiving, being questioned, doubted, told we are exaggerating about whats going on with our loved one, until they see it for themselves.

Caregiving is by far one of the hardest jobs and when it involves family, it can be a nightmare. The number one thing I deal with is a lack of support and appreciation from not only my mother but my family in general. Know Joyce that what you are going through is building your character up to another level, you are literally an angel to have stepped up and accepted the task of making her final years the best they can be and you will be blessed tremendously. I live by this prayer: God grant me the Serenity to accept the things I CANNOT change...Courage to change the things I can and WISDOM to know the difference! I also ask for my patience to be replenished and for more wisdom and understanding. Last but not least, get some YOU time, there is no crime in feeling overwhelmed or exhausted, Jesus couldn't help or save everybody so what makes us think we can! Caregivers are chosen for a reason and a season, because we possess the qualities rooted in empathy for others, we may not think we are capable of handling the situation,but God knew who to put in your position. I have found that when I stopped fighting the circumstances, I began to learn valuable lessons about my mother and myself and see it more as an opportunity than a stressful burden. It is still the most difficult thing I have had to do in my life but ultimately, it is the most rewarding because my mother deserves every moment she has left to be the best it can be and I am thankful for the opportunity to be here for her.
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Well if it is not relevant to the person who asked this in 2012, it could be for another today in a similar situation😘
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Like every one who answered you, I' m in the same boat, plus I too I' m an only child with a chronic illness on top of the other painful things. The fact that you're questioning yourself proves that you're a loving daughter still wanting to provide relief and happiness to your dear mom. Sadly love is not enough to compensate for the losses this d@#n disease affecting your mom causes.It is not your fault and sadly not in the power of anyone to give back to your mom the capacity to enjoy life anymore. Because the desease rip her of the capacity of adapting,tasting, enjoying,she is unhappy. My own mom lives the same in a very nice nursing home. She' s made a great female friend and they are like sisters. She has a very nice appartment with her own tv set and bedroom set. But she is unhappy. With very good reasons because she is losing herseelf bit by bit. As much as I understand that, as much as I love her, I' m just a poor human being and I have to admit I cannot as I was used to it bring relief to her. It is heart breaking and when she calls to lament herself, some day, when I' m myself to down, I found a pretext not to talk and to hang up with kindness. We used to judge if we are doing right with our loved ones by the results we obtained and that´s why we are so troubled and unsure and feel guilty with our poor suffering moms, because the disease put them out of our reach in a way. We must change our criterion to judge ourselves not by the results we hoped for but by the love, guilt, torment we're suffering on their behalf. If you're not indifferent, if you're worried, if you suffer to be unable to do better, then you are a loving daughter. Be at peace on that point. I hope, I've answered your anguished question a bit. Remember, it' s not you the cause of your mom's sufferings, it´s the disease.
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Does this go back to 2012?
Still relevant to the original message?
Just curious,
M88
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"She is 91, suffers with dementia, behavioral dilusions, develops blood clots (has a vena cava filter to prevent problems), has really bad osteoarthritis and has short term memory issue as well as aphasia. Now she has not let anyone touch her for over a year, and her toenails are so bad, they are grotesque. She has anxiety and depression and paranoia (getting meds for this)."

Wow, reread your own quote above. You are being WAY to hard on yourself and unrealistic!!! It's amazing how wonderful people can tear themselves down with misplaced guilt or shame and so unhealthy. Mom is where she needs to be. But I agree with the poster who says she needs hygiene and foot care--this can be deadly in older people, period. I'm all for patient rights but some of this gets absurd when you are clearly taking about people that are mentally impaired which is why they are in a facility in the first place! Peace and blessings to you.
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My situation pales to yours, but is similar in many ways. The biggest difference is that my brother and I persuaded Mom to move close to me (independent retirement living facility w/home health care available - no kitchens and the facility provides 3 meals a day). She has been here about a year and I beat my head against the wall daily wondering what magic I can perform to "fix it" because she greets me with misery and unhappiness every time I see her or talk to her. She will mellow and be civil after a bit - if I handle her correctly.

Trust me - you are absolutely doing all that you can do. Some things just can't be resolved. If you left her at home and some tragic event took place - which is more than likely what would have happened - you would feel even worse. Hang in there! This is the hardest thing I have ever endured.
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Joyce you really are doing your level best in a terrible situation. I agree the Doctor(s) should be doing more and please keep on at them as the nursing staff are usually stretched . The sedative might be the only answer. It is very difficult as I found even when I lived a mile from the nursing home. An independent caregiver as " ladee " suggested would be ideal! I only wish I had done this as my husband tried to stop me going to the home every day. Do let us all know when and if things improve.
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Sounds like my aunt. She has no children but the demands on the nieces and nephews are endless. She is 83yrs old, also a recluse, needed help and my cousin put her into an assisted living home. She hates the people, demands to move back to her home alone, is never appreciative of anyone doing anything and complains all the time. We're all exhausted, since we all still run around for our parents, her siblings and in-law siblings. We've run out of steam and it creates conflict among us cousins. She is a problem and never happy.

I broke my ankle very badly 5 months ago, still have trouble with swelling and stiffness apart from the 'knobs' on both sides of it. I hate asking my sons for help, though they did at first and miy wonderful sister who insisted on paying for a full-time carer for a full 2 months until I could manage a bit more on crutches. I hope I can always put my kid's happiness first, knowing that life for them is also to strive for better, even if they are professionals. I just never want to feel sorry for myself and when I do, I can mope on my own without them knowing.
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Greeeaaaat answers!! WHO WOULD WANT TO LIVE LIKE THAT???? NO ONE!!! Let her complain...that's really all she can do, it's not your fault! I'm going early too....just give me the valiums...for sure!!! No fear of death...just living to the end of life!!
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So sorry Deb you are doing the best you can and the dementia will never let her see why she is where she is. Do as babalou says and tell her the Dr just won't let her go home now you don't have dad to help. it is so hard to constantly visit such a negative person so maybe cut back a bit on your visits. Try and talk about positive things. take her soft things to hold such a soft blanket or toy, large or small. A favorite food or pretty card might take her mind off things. Can you wheel her out in good weather. i am afraid it is her dementia progressing so you can only modify her behaviour by medications that is anti anxiety or sedatives. it is a sad and hard choice but her disease is only going to progress so you have to find a way to deal with your emotions. blessings to you and Mom. Feel free to come back her and talk to others no one will mind and be ready to help. We all have the choice of reading your posts and replying or not so don't let your feelings of constantly writing the same thing over and over stop you. it is very therapeutic to get things written down it helps you see things more clearly.
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Oh Deb! My heart goes out to you! Is mom being seen by a geriatric psychiatrist? There are meds that might help, like antidepressants or antianxiety drugs. Blame the doctor! " the doctor says you have to be stronger, mom". It's worth a shot.
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My mother has been ill for the past 25 years. Suffering at least 10 strokes since then her poor body is pretty well shot. She has several health issues, Afib, high cholesterol , osteoporosis and dementia. During the past 25 years I have given up 3 part time jobs and so much of my personal time away from my husband to take care of both her and my dad before he passed. So I am no stranger to care giving. Both of my parents are/were very sweet, good people and we are very close. Moms hip broke last March and has been in a assisted living facility since confined to a wheel chair, PT says that she must have someone with her at all times. She absolutely, positively HATES it there. The Doctor stated that he would not release her due tot the fact that she must have the 24/7 care. Every day either when visiting or when we speak on the phone she BEGS me to get her out of there. Some days I feel like maybe I made a mistake and she can take care of herself, but when the next phone call or visit comes and the dementia is ever present I realize that this is where she should be for her well being. I have ran out of ways to answer the question "why can't I go home" and to add insult to injury she wants to know "why no one wants her", "why" are we allowing her to be held prisoner, people are stealing her things (not happening), there are mice all around (no). My husband and myself took care of mom 2 years ago for about 7 weeks. She had hospital psychosis and was recovering from afib problems, mild stroke and severe anemia and it was 24/7, I thought I was going to have a breakdown. So I know that I am not a candidate to take her back in. My mother is a very sweet dear person we have always been very close but when the mental inconsistencies show up its to much for one person to manage. Any suggestions how to answer her when she feels that we are doing this to be mean to her. Its taking a toll on me. It has become the only topic I seem to discuss with people over and over again. Thank you in advance for any and all help. Hope this makes sense. Debbie
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Olmaandme
you make a great point. I am 30 years younger than my mom and I am feeling discouraged about aging. Don't heal as fast, can't shake off aches and pains as a few years ago. Takes longer to get over a simple thing like a cold. Aging happens to all of us. Part of life. You gave me a new perspective--to see things thru her eyes.
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Honestly your mother would probably suffer the same depression and anger even if she were able to alone in her own home.What she wants is the youth she enjoyed, the freedom, the health, the security she had. She knows she it's gone forever but it doesn't stop the dream.Getting old, suffering the indignities of old age and the dependance on others is a bitter pill to swallow.If you are doing all you can to make her passage into this next phase of her life comfortable then rest easy.
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Lostwoman - You start a new post with more details on exactly what kind of trouble your brother is causing, and promptly find out how many people are in the same boat...then collect all the different opinions and see if there is anythng good you haven;t tried already.
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What do I do when my brother causes more trouble than help concerning my mother. She lives with me ....in my house.
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It is easy to be resentful and that brings on the guilt. I never dreamed that I would be spending my entire 6th decade taking care of my nasty mother in law. But that's what happened and I'm not thrilled about it. My wonderful,sweet
husband died..........and instead of him (the love of my life) I've got her.

I hate looking at all the "perfect" couples on facebook. So I don't go on facebook anymore because it breeds more resentment, etc.
My MIL is never happy and makes me feel guilty that it must be my fault. Well it isn't............ and for whatever reason she's miserable, I try not to beat myself up with guilt because it makes things even worse.
Over and out from "the twilight zone."
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I did not read answers or your entire question~~I respond from "How do you judge..."
You don't judge. You love yourself for what you do & how you do it. Then that is what you have to give~~JUDGE~~loose that concept~~it steams from fear.
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You are doing all possible but being good to, yourself~
DON'T judge yourself~enough others will do that~you need to love you.
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