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Even before the dementia took hold, I was never "allowed" to see a movie without her or go on vacation with just my kids without her. Sure, she realized the importance of me spending time alone with my kids, but didn't understand why SHE couldn't be there too? She would tell me that she would never do that to her mother (her own mother died when my mom was only 15 months old. Clearly that made a huge impact on her parenting style with me).

She is now living with me. I spend FIFTY FOUR HOURS with her a week. When she is out with the caregiver, she constantly asks "where's Karen?" and the caregiver has found that a simple "she's out with friends" or the like, won't work. She has to say something my mother would approve of, such as "she's at the gym" (I"m overweight and mom has been trying to get me to lose weight forever!). I guess the thought is that if it's fun, mom should be there with me. I shouldn't be enjoying any time away from her. I should be including her. Well, guess what? I don't want to include her! 54 hours a week is MORE than plenty enough hours for me to spend with her!!

So here's the issue. I just can't do this anymore. I thought a good alternative to assisted living would be to hire caregivers to do as many hours as it would cost to do the assisted living. This would give me lots of free time.

I don't want to abandon my mother, but I thought that say, ten, twelve hours a week would be great on my end. When I discussed this with the caregiver (who found a new job and will be quitting us anyway), she said that might be good for me, but she doesn't think it will be good for my mom to spend less time with me.

I was just about handling the guilt, but now it's back again. Sadly, she's right though. If you were to ask mom, she would say that she doesn't see me enough even at 54 hours a week!

I'm just so burned out. Other than the paid caregiver, there's only me. No family other than us.

It doesn't surprise me that mom only wants me. I'm all she has ever wanted since my dad passed away in 2005. Her entire existence revolved around only him. Now it revolves around only me. Maybe he liked it but I HATE IT. I feel emotionally strangled to death. I feel her eyes bore into me when I come downstairs as if to say "oh thank God you're here, now I can breathe again."

I Love my mom. If I didn't I would just stick her in AL and never go see her again!
I want to do what's best, but is me seeing her less really best. It's best for ME, but it's not best for her. So, who matters more? Me or her?

I fear if I see her less it might accelerate the dementia as she will be more frantic not being with me as much.

Please help, I just feel so overwhelmed and burdened and guilty and resentful and unloving and wishing one of us would just die to get this over and done with.

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Karen the first word that comes to my mind is "suffocating". What do you think you mother will do if you spend less time with her? Walk away? Have a temper tantrum? Be mad at you? What I'm getting at is you are in charge of your own life. Your mom is just part of it. You choose how much time you spend with her not vice versa. It's called setting boundaries. Make sure mom is in good hands, leave and spend time doing what you want to do and then return, hopefully rested and happy. None of this means you love her less. She has been allowed to "cling" all these years so you can't blame her. You aren't happy with the way things are and you need to change it for your sanity and happiness. My suggestion would be to plan a super fun outing and get out there and enjoy yourself...ASAP!
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Karenp, I see me in you. Mom is 91, though, and because she had to move to my state and leave everyone else, she has only me here. I know the feeling. I don't even have any caregivers to help. I still go somewhere every day if I can, even if it's for a half hour. Last night I was in my bedroom and she was asleep in her chair, and she woke and called out "Where is everyone? Did everyone go to bed?" I yelled back ( I have to yell since she loses all her hearing aids) "No, I'm in here." Boy, I know exactly what you are going through with a clingy Mom and it isn't easy to change someone after everyone allowed her to be this way her whole life. Now, I've learned to just go out and not let the pouting ruin my life. She can stay alone for a while, but it is getting where she shouldn't really. I have mentioned her paying for someone to come in and sit with her or take her places and she panics. She doesn't have a lot of money, but she could afford caregivers several hours a week.

You are ahead with the caregiver, so that is a good step. you need to do things with your kids and family without her. Good luck.
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My Mom is 92 and I have lived what you're living. My dad died when I was just 19 and I have always taken up the slack for my Mom. I have taken care of her business, house, etc. for many years. She has tried so hard to break up my marriage and has never had much of anything good to say about me or my husband. I have even been accused of being her "enabler." About a year ago, she moved in with my husband and I because she was not eating, progressing dementia, etc. We used to get out and take walks and ride bikes and I would leave her at home with my husband while he worked in the garage and I worked my job. she would always get angry when i left the house. She was sooo clingy. I was all she wanted. In Dec. she had a "brain bleed" was hospitalized and could no longer walk. I placed her in assisted lving where she only lasted 3 weeks, because she was yelling for me, paranoid, confused and agitated. Well, I brought her back to my home, not knowing if i could handle all this or not. I did hire a wonderful caregiver and I use all of her income to pay that caregiver so I can continue to work, go out to dinner with my husband or visit with my kids. I don't think my Mom will be around much longer, but you on the other hand may have a long way to go with this. Pay that caregiver and get out and continue to live your life. You can do this! Don't feel guilty, you are a great daughter. Surround yourself with people who can help - any local agencies for the elderly, etc. Do things for yourself and your kids. You are not her entertainer. Find an adult day care provider and insist that she go! And use all of her income for your time away from her and it is money well spent! Nobody trained us to be caregivers, but we have taken on that role. remember god gives us the strength to do what we feel we need to do . God Bless The Caregivers!
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Oh I hear you.Mine lives with me,and I am the only one in charge of her care.My sis works full time and does take her 2 hours a week,but I am feeling the same.I can't even go to the bathroom in peace.If i didn't have a lock on my bedroom door,I would be insane...please do what you need to for your sanity!!!
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I think that if she was in an ALF, she would have other stuff to distract her from only thinking about you. At your home, with the limited number of people to interact, she can't be focused on anything else but you. If she truly does have dementia, she probably doesn't remember that she is with you during the 54 hour week. When I call and talk to my mom, I ask her who has come to visit lately? The answer is always, no one, she hasn't seen anyone for months. I know, my aunt (her best friend, since childhood), my uncle (her younger, and only brother) and my sister have all seen her within the week. You have already sacrificed, quite a bit for your mom. I think you should work on letting go of the guilt. Some people on this site, condemn anti anxiety meds. My mom was a monster, before abilify. She is no sweet, wall flower zombie now, but she is somewhat content. Which I consider a huge positive, considering how negative she had become. Just because she goes to live in an ALF, doesn't mean, you'll never see her. It means that it will be more in your control. I'm sure if you had more "me time", the time you would spend with your mom, would probably a higher quality experience. That would probably be better for your kids too.
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I know the feelings well also. It is hard, especially one with dementia, my mom has been off the wall lately due to several factors not in her normal routine. friends over, dinner late and changing of the tv schedules. Last night my daughter came to visit and mom was complaining no one talked to her. we asked her to play cards and color with us and all she wanted to do was to pace, which drives me crazy. My son just said she was jealous, and he is probably right. I get to be here to watch her regress due to the dementia, but I can look back and say at least I had a few months of freedom before she moved in and the kids moved out. Getting married in June and I have to make arrangements for 24 hour care and I know she will be off the wall then. I work 40 hours a week and then it is home to mom and she starts pacing, singing and clapping until dinner is on the table. Most nights I sit at the table with my computer just so that I am here where she can see me. This is the life I chose to take care of her, because the NH after her last hospital stay wasn't a pretty site. I have to listen to her say that she wants to go home, not realizing this is now her home, sold most of her stuff, used the money for her care while I work and I get 4 hours a week to go out and do something. My mom will be 87 this year and I don't see things getting any easier for me, but so goes life.
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I am floored to be reading about myself! My mom is 83 and I have taken up the slack with her for my father dying at 54 years old - she was 53. Competition between my husband which I married 10 years ago late in life and her have reached large proportions in regard to her 'using' me and him 'protecting me from her'. He has been ill a year and taking heavy duty medications and I have developed a heart thing where it speeds - I think the stress is trying to take us down. I feel responsible for making my Mom a spoiled child cause I have always given her everything and done everything for her even without asking cause our family doesn't really talk at ALL and I'm a doormat. You don't do anyone a favor feeling sorry for them cause I'm seeing the result now. Anyway - I've seen her for real and now am not sure if she's developing into someone stubborn and obstinate or has always been. This new awareness is saddening. I've had her checked and she is on the borderline dementia phase. She gone 'off' a few times but has always bounced back. At times, with the dissention in the household, I am so relieved she might not remember. I try and keep things as positive as I can. If the doctor didn't increase her meds for depression, I thought I couldn't stand it. Thank You for everyone who shared. It has given me great insight and resolve to move forward stronger and more aware. It's just me and always has been even with 2 sisters. My older sister just dumped her and said she couldn't 'do it anymore'. That was just visiting her and shopping. I'm glad God gave me this time with her of course however I'm finding that everything I know intellectually about eldercare can be put on the head of a pin. We have been talking about taking some courses through a senior center here in town and I think we will make that appointment for sure. Thank you again all of your sharing and God bless and carry you through.
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Hey KarenP and cmor1954 -- I hear both of you. I get this same thing, and she lives with us. Privacy has gone out the window. She has to know EVERYTHING all the time.....I can't make a move. If I go to do laundry, it's "I thought you did the laundry yesterday" (why do you care? as long as yours is done, what difference does it make whose I am doing now, including my daughter's if she needs help?)
She HAS to know where everyone is, what everyone is doing, what they are going to be doing, what did your husband say before he left this morning, what is that thing outside on the grass, it's a constant line of questioning and she is very clever in the way she gets the info out of you......it never stops.
Everytime I go past her room she has something to say. In fact, she has something to say about everything!! Always putting in her two cent's and a lot of the time, making hurtful and inappropriate comments about every single thing.
If she doesn't get what she wants in the time frame that she wants she starts nagging. "It's four o'clock - you better order that food now or it won't get here til 6!" "What are we having? I don't know if I'll like that". Then it goes to my children and their children, unsolicited comments and advice that never, ever stops.
Is she trying to live her life through me? Because she didn't do a very good job of living her own!! That's for sure!!
Of course the golden sibling is never, ever nagged or questioned because they would just retreat and distance themselves so she wouldn't get to them and they know how to cut her off so these things don't happen....but then again they don't live with her.....
You're probably wondering why isn't she in a care facility: three words -- she won't pay!! and I sure as hell am not going to even if it would give a freer life!!
Like you cmor, my dad died very early so he was off the hook. I doubt if he would ever have survived old age with her anyway!
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You're doing this to yourself. When someone has you by the short hairs, you're the one letting it work. She's DEMENTED, right? She's obsessed with getting your attention, but suppose what she was obsessed with was, say, sticking matches up her nose? You'd just get all the matches out of the house and keep moving. I'm giving you a slightly crazy example on purpose. So look hard at the "guilt" business and where it's got you hooked. You're a grown woman but we have the opportunity to keep growing all our lives, and this is a growth frontier for you.
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"Who matters more?" You matter equally, but she chose her path and she is needy and dependent. Think Hoover, vampire, sucking the life out of you.
For what reason? She feeds off your energy. Hurry up and make some more!
Tough Love is a good exercise. You be in control of your life and how much of yourself that you give away to others. You wouldn't let anyone else do this to you.
It is survival. Don't be used by anyone. Find a nice place where she will make friends. Let her get settled in for a couple of weeks ( yes) then visit her.
You will soon get your life back. Then you will lose weight. Blessings, xo
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I'm not sure that Assisted Living will help much. My Mom wants me to do everything for her. She even tells to maid not to dust because I'll do it. I spend so much time doing things for her that we can't enjoy ourselves.

A psychiatrist told me that one of the greatest fears of an elderly person is dying alone. They do know that the end of their life is near so I suppose that's some of it. It sure is suffocating.

I have to disagree with your caregiver that time away from you wouldn't be good for your Mom. Like the airplane crash analogy, we need to take care of ourselves first. It's hard to remember that.
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I agree with Christina.....spare us the Dr. Phil crap, "you teach people how to treat you" !! It's nonsense. These people are 99% of the time narcissists, and they only get worse when they are older - they don't have a "true self" so it's all about them, all the time, their dr. appts., their medications, what they eat, even, G-d forbid, their bowel movements!!
I don't believe that you teach people how to treat you. Why would anybody choose to be treated as a doormat? These are users and manipulators. They will go to any extremes to get drs. and caregivers, and US, to get what they want, when they want, and their own way. They are devious and when they find a victim, they hook on like a bloodsucker!
Block and detach, set boundaries, is the only way to survive with them. If they HAVE to live with you, you have to remember, it is your home, your life; they can live in your world, but you don't need to live in theirs. Otherwise you will end up being their "whipping boy"!!
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Seven13 and Christina, you are both correct in that you need to take care of yourself 1st. The point I think you are missing is that you can't teach a person with dementia anything. They can hardly remember things that they learned how to do years before the dementia. They do not know that they demanded a glass of water from you 1 or 15 times, even if they are holding the glass in their hand. It is hard to deal with, but your demented 80 somethings are basically the same as a two or three year old, NARCISSITIC. Babies and young children are wired this way in order to survive. They (typically) learn to control their behavior. A person with dementia can't.
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Hi KarenP, my mom is 89 and she and I have lived together a number of years. Just in the last six weeks she has slid into dementia like a baserunner sliding to home plate - not slowly, but with a big crash. It has been hard for both of us. She has also developed previously unknown heart issues.

I gave serious thought to leaving my job and spending all day with my mother, and just getting a caregiver for when I wanted to go to a bb game or something like that. The only issue, of course, is that I can't fully protect her and I think she would drive me batshix after awhile. I love my mother dearly, but while I want what is best for her, I also have friends and relatives reminding me that I need to take care of myself since I am the only child and my father has been long gone.

You have a choice - to get your mother some part-time care, or to have her admitting to full-time care. I recommend starting with some part-time care, which will give YOU some relief and help your mother adjust to you being out of the house. Maybe start with an hour a couple days for the first week, then go to two hours, then a little more.

That being said, make sure to check out whoever you use for your caregiver. Don't get a volunteer - they can sue you if they are injured. You want someone who is bonded and insured, and whose skills have been checked out.

All the best to you.
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Karen, so many comments, and many of us RIGHT THERE WITH YOU! I sense that you are a loving caring daughter. Your post could've been written by me, as so many of the others. I think of SMOTHER sometimes when I think of Mother. But I really do love her. And I can't think of placing her in a facility, because as one person commented (maybe Vicky?) it would just zap her quickly into a frenzied frightened state, and it would be sad to see her go that way. Rackem was so right on with the comment that these people are like little children....me, me, me. That can't help it. They've reverted back to those survival skills that babies and young children are wired with. So very true. I don't see them as demanding, manipulative, bloodsuckers! (Unless, of course, they've been that way all their lives.) My Mom has always been somewhat manipulative, but always very loving, kind, and giving....her family being the most important element of her life. Thus, I can understand why family always remained in that significant position. And I have been the "lucky" one that now gets all that focus, all that attention, all that smothering. It is challenging to get away and get a break, but I'm just determined to do it, and I am finally working it out fairly successfully. When I get away, I just enjoy myself...guilt-free. I need it, and deserve it. I do it in a way that is firm but kind, just like in dealing with a two year old who doesn't want you to leave. I know she asks over and over when I'm out of sight the same question: where is she? When will she return? But, it's not like she's going out of control, or throwing things. It may be annoying to a babysitter, but afterall they ARE getting paid. And they don't live with it 24/7. So I don't even feel guilty about that. I just have to be persistant and determined and downright selfish about the time I need alone. Ahhhh! It feels so good. :) Blessings to all of you good, caring, and wonderful ppl. We all can give ourselves a nice pat on the back and know we're together in this, and for some reason (misery loves company?) it helps.
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Rackem, who's trying to teach them anything? I have experience with 3 generations of NARCISSISTS. It's amazing I have a nerve left but I have a strong mind and a tremendous drive to be victorious through righteous means. I haven't missed much except a nurturing childhood. But now that I am an adult and have raised 2 awesome, responsible, communicative, ambitious, gorgeous children who have depth of soul, love God, love their parents, speak up for justice, convey appreciation, are honest and respectful, but by no means perfect-- I know what I'm doing. I am still trying to fulfill my dreams and goals for myself in spite of the bs of Gma, mother, and older sister who all attempted to keep me down. I have no sympathy for these selfish people. I encourage others here to quit wasting time trying to rationalize personally taking care of them, ruining their own health, taking on false guilt in middle to late years.
Additionally, toddlers are innocent and must be trained. Adults choose their behavior and whether they are going to be loving and giving, or a royal manipulating pain. Amen.
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Amen is right! How can one have sympathy for them just because they are older, when they have behaved this way all of their lives, putting themselves first? they sure as heck don't care about us, so why should we care about them and sacrifice whatever life we have made for ourselves just to abandon it and look after them, so they can have what THEY want!
It's different when the narcissism is a component of dementia.....but if they have been like this all their lives (as my mother has) it's a whole new ballgame. They do NOT own us -- a lthough they like to think they do. They are not in charge, they do not control everything especially when they are almost 90 yrs old!!
This thread, although its subject is a "clingon" parent, cross-references to bullying and narcissism.The only criteria for difference is whether or not this is part of the person's makeup and has been there all their lives (making others' a living hell and ruining their childhoods and them, for life) or whether it has had its onset in old age with dementia.
It is extremely difficult to feel sympathy for someone who has been abuse, in every way, for your whole life, and who you do not love, but have chosen out of the goodness of your heart to care for!!
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Christina, I'm sincerely sorry, if I offended you. The conversation was regarding a person afflicted with dementia. I'm not a doctor, but the many doctors I have been to with my mother have all agreed on one thing, and that is that she can't CHOOSE her behavior. Its a pretty lonely existence, even if you are surrounded by family members that you can't quite remember who they are. I only pray that if/when it's my destiny, someone feels sympathy (not guilt) for me.
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karenp, you may not realize it, but you answered your own question in your post. Hiring the care givers and giving you more free time. It is not better to care for her the hours you can even if there is guilt then doing 54 hours that comes also with resentment and anger?
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Rackem, you didn't offend me:) My Mother has dementia; my memories of her and adult interaction with her are those of selfishness and things she did that never made any sense. Hard to figure out.
I understand that dementia, per se, is not chosen. Whatever her mental condition or personality, it morphed into dementia. Did she have dementia in her 30s? Don't know. She was angry, impatient, selfish. She cannot hurt us in her advanced condition, but once in awhile she still shows her snide personality. I just say goodbye and leave, sometimes in disgust. But she can't help it, I know. xo :)
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First of all Karenp, nothing you do is going to impact her dementia. It is a progressive, degenerative disease with a terminal outcome. What would happen if you gave yourself those 10-12 hrs. per week by yourself? Your mother would still be with someone, and you could get respite which you desperately need. Parents like to make adult children feel guilty, but remember YOU CONTROL WHAT YOU FEEL AND THINK! No one has the power to control that unless you allow her to. A 15 mos. old does not remember who their mother was so her telling you she would never have treated her mother any way is poppycock! Tell her you need time alone and if she objects, say, "I'm sorry mom, that is the way it is going to be!" Just because she has dementia does not mean she can bully you into sticking by her like glue. Be strong, get some You time and pretty soon she will forget you are gone, and she will not recognize you. Best wishes.
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Talk to her MD, if she has a gerontologist even better, and ask for n anti-anxiety med. It helps my mom. I can leave for a couple hours at a time. She may be mad when I leave but she forgets when I get home that she was mad. Good luck. Definitely do things you need for yourself, especially if you can afford a caregiver so you know she is in capable hands.
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AlwaysMyDuty is right. You must set your boundaries. Who knows, maybe that's one of your important karmic lessons for this life. You still have time to learn it.
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Wow, thanks for all of the responses. I am in the middle right now of finding more caregivers. I just cannot understand how some of you out there can have someone with dementia, mobility issues and hearing loss live with you and NOT have any help. I feel like I am in quicksand. I kind of wish I had your resolve. But sadly I don't! Oh the joys of being an only child with no other family members.

Sometimes my mother says out loud that she wishes she was dead. I'm ashamed to say that I've uttered under my breath a few times, "me too!"

Thanks again. I guess my sanity (or what is left of it) is something worth salvaging.
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First of all may I suggest try to determine when she is most needy and if there a pattern to her dementia. Every one is different .Document time of increase of the urgency or needy behavior.Also document triggers. Once you establish some sort of history or pattern you will have better solutions to moments through out the morning day and night. It will also help you better share with the doctors or others who are helping you with care giving for your parent, or person of concern. Sleep patterns are also very important.
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I agree with your caregiver, she feels alone , confused and scared now and needs love. A great idea is to hire someone weekends,and maybe 1-2 days during the week. I am doing it, living the same life only my Mom cant walk, talk hardly, or see hardly and is incontinent. Regardless she reaches her hand out to me and it makes me melt. I try and think of it as a job full time, and hire help weekends. Lots of times they dont come but I am working on it, it makes all the difference in the world having time off. Good Luck, I understand completely!
PS try music and singing the old songs, or christmas ones they remember, they love it! If she can see, get some I Love Lucy and Lawrence welk dvds also, they love those too. (My mom cannot watch tv but makes her feet go to music)
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I don't dispute that your Mom feels confused but you feel destroyed. Since you can fix only ONE of these problems, save yourself. She will be mad but most of the emotional blackmail I see on here stems from caregivers feeling guilty if their mother or father or in-law is mad or makes them feel guilty. They are going to do this even if they get their own way since whatever you do will NEVER BE ENOUGH. So, save yourself. If you burn out or get sick, they will have no one.
Let the sulking begin. Don't bother to try to make them happy. That's never gonna happen!
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Hi there, I just read your post and started crying..I feel like these are my own words you posted. My mother is 81 and lives with me, my husband and 2 kids of 14 and 12. We all feel trapped like in prison. We are not allowed to leave the house without her.W e are scared to go to the movies or drive around together like we use to. She gets jealous if she does not get to go..So we stay home or just take her everywhere with us. She got mad at me one time last year when I took my daughter to the mall alone and left her home, I wanted to spend alone time with my little girl, Well when I got home my mother was crying in her bed then that next day asked me for a gun to kill herself, That was done in front of my kids. My 14 year old son has developed nervous tics now. I am scared of going downstairs every morning not knowing what her mood will be. I feel I have lost my life as well as my husband and kids too..She is very controlling and is always angry if she does not get her way. I am very depressed because of my life, I feel alone and get no help from my sisters, They tell me just to deal with it and they are tired of hearing about my complaining.I try everything to keep my mom happy so there is piece in the home. I have panic attacks every day. I know how you feel.
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karenp im in this position and like you cannot do this anymore its what you say is suffacating im losing myself and also alot of friends a bit different here as i dont want to live in this one horse town im drowning in negativity here and after getting quite ill from stress I know now I have to leave and find a solution for mum either she comes to live with me in another town or a NH as i just cannot do this on my own family all live abroad and dont help much! the posts are right though its your life too and you have a right to live it the way you want the guilt is overwhelming and ive been there BUT its I crack up and have a breakdown OR my mum goes into a NH im trying to do the right thing even have her live with me but then she would still be on her own??
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My lay person diagnosis is mom is codependent. It's about time you had some time to yourself. Hire the caregiver, be ready for her to complain, but proceed.
You deserve a life, you have more of yourself to share when you are fulfilled.

Be careful, break the pattern by regaining your independence. Bad family behaviors can be learned and repeated. Do it for yourself and your kids
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