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I’ve read posts of many caregivers being burned out and wanting to get out of their situation. I see a lot of encouragement, do’s and don’ts, but what I haven’t read is a way for the caregiver to really Get Completely Out !!!!
I have been a caregiver for 3 years now. No help. I can’t go anywhere, not even to the store, which only takes me 20 minutes there and back unless I find someone to sit with my mom. By the way, she’s coherent and can get out of bed, but refuses to do so. She handles her business, but is petrified of being alone because she REFUSES to get up out of the bed.
I am totally burned out and I do not want to care for her anymore.
How and who do I turn to to relieve me?
She doesn’t want to go to a facility, she doesn’t want anyone in her house.
I am trapped!!
Any suggestions?

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Welcome, Legna!

So, mom CAN get out of bed (say if there's a fire), but she's afraid to be alone, yes?

Has she been seen (via telehealth) about her anxiety by a geriatric psychiatrist? What does her internist suggest?
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Your profile says Mom is 57? Or is that you? Do you live with Mom do you work at all? If your 57 or Mom is, you are too young to give up your life for her.

I would have Mom evaluated. First a good physical to see where her numbers are. Checked for any cognitive problems. Then I would ask if Dr. could give an order for a physical therapy eval to see what she can and can't do. If its deemed she is cognitively ok and she is not 24/7 care then start making your plans. If you have no job, get one. If she feels she needs someone to help her, she can hire someone. If no money, see if Medicaid will provide an aide a few hours a day. Once you have a job, you can save for a place of your own.

Do you enable or disable Mom in any way? Disabling meaning she can do it herself but ur doing it for her because its easier than listening to her. Its not too late to set Boundries. Tell her your tired of doing what she is capable of. Maybe it will take her longer to get something done, but you aren't doing it for her.

If you are not her DPOA, while she is competent, have her assign you. This does not mean your her Caregiver or there to fetch and carry for her. Its a tool. It will not be effective until she is not competent to make informed decisions. If she is 57, this is the way I would go. If she is more in her late 70s into her 80s, I would have it immediate. She could still be in charge but you don't need the competency thing to take over when its felt you need to. It gives you the ability to place her when she needs that 24/7 care.

There are posts on the forum where OPs have placed a LO in an AL. Everyday the LO calls complaining. One day the OP stops for a surprise visit to find the LO having a good old time. Some its doing for LO because they say they can't do it. A camera is put in the house and low and behold, LO is doing what they have been telling LO they can't.
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Jholley17 Aug 2022
Om goodness I think you may have just changed my whole life. I have been caring for my my mother now 74 for 17 years. I have lost many chances at love that she has purposely sabotaged, my own health has declined due to daily stress and worry and no time for my own self care. She has become increasingly mean and ungrateful throughout the years though throughout fear, guilt and obligation I have continued to care for her. She has left me broke and alone and now my health has deteriorated to the point that I have mild heart issues of my own I'm only 57 with not one friend as she has completely isolated me from anyone. She has ruined our ties to any living family members as well. God bless you all. In love and light. Judy
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She's coherent and it sounds like you can just make preparations to leave. She is in control of her own life - and business - as are you.

Let your mother know that you are no longer willing or able to be her caregiver. Set a timeline for moving out(?) or moving on with your life.

You are in a dysfunctional relationship with your mother. The only way out is the front door. Move on with your life.

You matter and I hope that you take charge of your future. You can always call her local police precinct to do a wellness check on her.
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You are NOT trapped. You have for some reason chosen to let your mom rule your life for way too long. It doesn't matter that she doesn't want to go to a facility or that she doesn't want anyone in her house, or that she chooses to stay in bed. Those are her issues, not yours. And the fact that she's only 57 years old, means that she and you are way too young to be living the way you are. You haven't listed any reasons that your mom can't be living on her own.
Your mom obviously needs psychiatric help as do you for allowing her to use you like she has.
You give your mom a 2 week notice that you'll be moving out and that she will now be on her own, as it's time to quit enabling your mom and time to start living your life away from her. It will be much healthier for you both.
Best wishes in getting your life back.
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lkdrymom Aug 2022
I agree, you are not trapped...except in your own mind.

Make plans to find a new place to live and let your mother know you are moving out on this date. You are enabling her behavior.
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You can do what my sister and I did and be the adults. You tell her you make the rules and will live accordingly. If she doesn't like it then it's time to get out of bed. I would give her some cannabis gummies too. They are 10 mg each and may just relieve enough anxiety to get her to move again. If she's truly functional you should make your own exit plan. Save yourself.
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In all honesty, there is no way to change the situation … unless one of you changes. It doesn’t sound like she will change a thing unless forced to do so. You are the only one that can force the issue. My mom was somewhat like yours, very demanding, but at least I had my husband to help me. So your only option, as I see it, is to try to have a reasonable conversation with her. It will go something like “Mom Do you know how much I love you? But after three years, even though I love you just as much, I’m getting burned out in my life with very very little time to myself. I need some space and time to enjoy my life too. We need to put our heads together and figure out a way for me to have more free time. Do you have any suggestions?”
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According to your profile your Mom is 58 and has no major health issues...

Get up, walk out the door, and dont come back.
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“Insanity is doing the same thing over and over and expecting different results.” 
Albert Einstein.
Be the first to change your behaviour to get a different outcome. No easy task by any means but it's the only way for a change to occur. Good luck!
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Oh my gosh! Your mother is only 57 years old????? And you are on an aging care site? Your mom is not old, she is just helpless.

She needs to get a job, get some medication for her anxiety and depression, and start exercising to help her Arthritis.

You need to help her to do those things in order for YOU to get out.

BTW, I am 57, and am far from old.

Show her this: https://oldladygains.com/blogs/women-you-should-meet/meet-ginny-maccoll
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This is your "no win situation" and your mom is playing you like a fiddle.

Talk to the sitters that you current hire to sit with her. Tell them that you are going to be gone 2 hours. Tell your mother that you will be gone one hour. Tell the sitters that when your mom starts wondering where you are that they are to speak to her in a calm voice and say things like.

"maybe the appointment went long" " Traffic can be bad this time of day" "I'm sure if something went wrong they would have sent me a txt/called".

when you get home tell her.

"mother the Dr's office was packed and I did not get into see them till ____. Nothing went wrong, you are fine and you weren't alone".

Your mother might be phobic about being alone, They only way to get over this is to expose her to times where you aren't there and assure her nothing went wrong and she got through being alone.
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Hello,
I have never answered anyone on here (that I remember) but this time I need to. I have a very demanding Spanish mother who has been the Ruler of this house and our family for YEARS. Very demanding, uses words to hurt, doesn't care if she makes you cry. She can be Dr. Jekyll and Mr Hyde. Almost makes YOU feel crazy. I had to leave my beloved job one week early (5th grade math co-teacher and will never see most of them again) because my mom was released from her rehab nursing home. I did not lose my job but this tore my heart out. My #1 priority is my family so this was what I needed to do. My dad and mom are 82 but my dad had a stroke on October 31, 2021 and mom had hers on Easter 2022. Dad is not completely balanced on his right side. My mom is completely bed/wheelchair bound. The first month here I cried more than I have in YEARS. My situation is not as horrible as yours but here is my advice. I had to tell my mom that I run from being treated bad, I will NOT STAND FOR IT. When she is nasty I tell her that I will be upstairs and will come back when she "feels better". I leave and don't come back for 30 minutes to an hour. She is taken care of changed, fed, and is safe. She has treated me this way my entire life and I have always said, "Oh that was just the way it was back then". Well now that I am 58 I will not take it anymore. I love my mom but have said for years that if she was not my mom I would have cut our relationship many years ago. I have learned that it is best for me to walk away or tell my dad that I am taking my BELOVED dog to the park. If you let "guilt" take over you will be a prisoner in your mom's castle forever. You need to contact a social worker. I have never had therapy but since this change in my life I do now. I "pay" her to be my BEST FRIEND and listen to me complain and tell her how I deal with my life now. You need to have BOUNDARIES. When you walk away and go to the store or park it will feel like you are free from what has bound you for years. You need to care about yourself now. I am the only child that can take care of my mom but I told my dad .... if I go insane what do you have now? I also got visiting angels which my dad did not want to do until I went home (2 hours away ... all my plants are dead.....) for 3 days to get dental work and he realized that taking care of her is hard physically, emotionally and EVERYTHINGLY. (made up that word!)
If you value your life don't be a martyr. You have the power to change YOUR life. Get a weekend pass and get away. Give your mom the phone and water and protein bars and let her know you will be gone. I would actually start by leaving for an 1 or 2 hours....one day and more the next until she knows that you mean what you say. What would she do if you got sick and could not care for her? PLEASE don't be a slave to your mind and thoughts. I was trained to feel guilty about everything. My mom wanted to be a Catholic Nun so... imagine my youth. Catholic guilt like no other. STAND UP FOR YOU. You have the key to get out of your cell....to leave the shackles that bind you. Otherwise you might as well nail all the doors and windows shut. I wish I could convince you to act for your well being but only you can do that. Try to read books about co-dependence. I learned so much about why I acted the way I did. My trained guilt. Good luck. Care about yourself. Btw... you don't have to leave the house to get help. My counselor/therapist is by phone and zoom. The books on codependency can be read on your phone. Good luck. I hope I have helped. I do not mean to be harsh but this is the truth that I live until my job starts AUGUST 31st. Since June 12th I have only been home for 3 days. Before this I could not be around my mom for a weekend. It has been hard. but I have learned.

Nancy in Seabeck Wa.
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A "realistic way out" will depend on you having a "realistic" expectation for what a solution looks like. Once you tell her you're not going to do her caregiving anymore she WILL be angry/upset/emotional/manipulative/etc. All of which you will ignore.

You are not responsible for your mother's happiness -- especially since you stated "she's coherent" (I guess meaning she doesn't have dementia...?)

If I were in your shoes I'd resign by telling her you do not want to do the caregiving anymore. This is different than saying you "can't" do the caregiving because that implies you can change your mind if there was some sort of token change. No to that. Assure her that before your last day you will help her get other help in place. If she refuses that you can allow it to go how she chooses, but then don't rescue her. Leave her the names and numbers of people she can call for help OTHER than you. You still love her but see that your presence is just keeping both of you from living best lives (yada yada however you want to express this). Then leave by the deadline and move on with your life, knowing she'll be calling you often to manipulate you back into the enslavement. Solution: let her calls go into voicemail and then decide when you call her back and what you'll discuss. You can do it -- it won't feel good (at first) but then it will. I wish you all the best moving forward!
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"I see a lot of encouragement, do’s and don’ts, but what I haven’t read is a way for the caregiver to really Get Completely Out !!!!"

Really? I read posters who patiently detail the steps for overburdened enslaved caregivers to get out of their situations.

Unfortunately, most people who come here for help can't/won't do what is necessary to change their lives. Once in a while, a poster WILL make the necessary changes, and we cheer them on as they take the necessary steps to change their lives for the better.
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I was my mother's caregiver from March 13,2018 when she broke her hip to October 08,2020. I was her full time caregiver June 02,2018. My mom had long-term care insurance and they would not pay me to care for her. When she first came home there was a agency that came out 2 a week to check on her and bath her. She also had therapy a couple of days a week to get her back on her feet and walk. I would stay there with her so she was comfortable with them being there. There are companies that will send out people to come once or twice a week that is paid for by Medicare. or her insurance. I would have them come out and I stay there with her so she could get use to somebody else with her. Then I would leave them with her when I went to the store or just in the other room so I could have a break. My mother started let other people in the house to help. But be careful of who you have there. Never left them get to comfortable where they don't pay attention to your mother and no phone while they are on the job. My mother was not responsive on October 7,2020. I told her if it was time for her to go that I would be ok. My mother passed away on October 8, 2020. I am still recovering. I was lucky I have a wonderful family that were there for me with support even thought they were out of town. I have a wonderful older brother that was always there when I needed him no matter what time it was. Do you have any family to help you?
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Adult Protective Services (APS)

You can call them or you can deliver your mom to the ER and let them know that she has no caretaking help available and she has mental issues that require assistance. If all else fails, record her behavior and call 911 to do a welfare check with intent to get her placed.

Pack your suitcase before you leave home and head to the airport after you drop her off. Start making plans as to where you would like to live. You can FaceTime her wherever you land.
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"By the way, she’s coherent and can get out of bed, but refuses to do so. She handles her business, but is petrified of being alone because she REFUSES to get up out of the bed."

Well, she should be SAFE in her bed. I'd quietly leave for a few hours each day without telling her and go do whatever I needed to do. If she were to get up while you are gone and takes a tumble, how is that any different from her taking a tumble while you are outside doing yard work or even in another part of the house?

I'd be getting the heck out of there every day. You say she is coherent. If she has a phone with her for an emergency, you should be able to leave the house.
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The realistic way out is to take action. You need to decide that your can't continue to be a caregiver and maintain your mental, physical, and emotional health. You mother can't make your mother change, only you can change. You have trapped yourself in this situation so need to find a way out.

Either you need to give into her wishes to not have anyone in the house/go to a facility or you need to get paid help/find a facility for her. I personally would start with having paid care in her house as it will get her accustomed to have people helping her. If her care level increases, she can move to a facility.

Good luck, it isn't easy to make these types of decisions but it is worth it.
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Good question but how do you get out of it if she is your wife and you do not want to go broke.
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CaregiverL Aug 2022
See elder law Atty asap
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Well as long as she's sitting tight in the bed at least she's in no danger of falling.

Look.

She refuses to get up out of the bed.
But how about...
You refuse to stay trapped in the house. There is the door. Open it. Step outside.

The point being:
Your mother makes decisions for your mother.
You make decisions for you.

You are not responsible for finding the support she needs. She is. So you tell her enough is enough, and ask her what she plans to do when (not if) you return to your normal life. Note this point carefully: it is not for you to suggest the options - in home caregivers, assisted living, whatever. It is for her to understand that your support is coming to an end and SHE needs to think what SHE wants to do next.
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I suggest just you consider this.
1. Explain that you cannot and will not continue to care for her 24/7, but will give her a choice as to what she wants to do.
2. Choices: (a) You give her a schedule as to when she can count on you. She can either be alone with some connective device (e.g. cell phone, Ring camera, monitor, Amazon Show or Echo (with a drop in feature), or have other helpers. (b) She can move to a "warehouse for the elderly" where she will more than likely be lonely and neglected.
3. Give her 1 week to contemplate this and make a decision. She can change from one to the other if it doesn't work out.
4. Hold your line. Love involves boundaries. It would not be good for your mother if you "departed" before she did -- though that happens to many caregivers. It is not good for your health if you are feeling stressed and burdened.

"I go where I love and where I am loved, into the snow; I go to the things I love with no thought of duty or pity." - H.D.
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Anabanana Aug 2022
Just to expand on elisny’s post, if she has not declined cognitively, consider making a list of things need to be done. Everything. Then go through the list with her, item by item, and assign responsibility. Be sure to break it down into every step. Not a nebulous “make meals”, but who plans the menu, shops for groceries, preps breakfast, lunch and dinner, serves meals, then cleans the dishes and kitchen. Assign yourself ONLY that which YOU are prepared to do, not everything she wants you to do. Have her check off her own responsibilities. Then address what is left. Can she live without it ever being done? Does she need to hire help? Does she need to change her living arrangements? Stand firm. Which isn’t easy. You doing everything is not one of the solutions.

You may be dealing with cognitive decline. The panic when you leave is a hint, as is choosing to do nothing for herself. My mother stopped feeding herself in care. I told her to feed herself, at which point she did. She claimed nobody told her she should. Clearly a broken brain. With zero empathy left.
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You need to set some boundaries, and you need to hire some help. She doesn't get to choose to be bedridden - if it's not a physical necessity it's a choice. If she makes that choice, you get to make your choice to hire help and get some respite time. She can like it or lump it.
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You're 58, or is your mother? Dysfunctional family dynamics. Can she cook, shop online and do other life functions to stay independent? You say that you are a sole caregiver, but do you have any family at all for opinions? What about getting a social worker? Help is available, so you might have to use tough love to obtain it. I it best to get a job and move out.
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stop enabling your mother which is what you are doing by doing everything she wants. TAKE THE STEP OF TELLING YOUR MOTHER YOU ARE GOING OUTAND DO IT!! Take care of yourself first. Does your mon have any medical issues - If so how do they impact her daily activities - You also probably need to see an elder care attorney to develop will and POAs [financial and health] if they don't already exist. How long has your mother been bedridden? How did this start? You say she can get out of bed, but can she get around? If she is in the bed all the time her legs are probably very weak? Does she get up to go to bathroom? to Eat?

. You might also consider going to your local Dept. of Aging for some help, but for them you should have some more specific info about your mom.

Do you or did you work? What kind of financial resources do you have? How do you get things like groceries? cleaning supplies, etc?

Are there any other family members or friends that you can work with to assist? What are financial resources for your mom? What business does she handle?

You might consider coumseling for yourself to help you deal with all this.
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Leave.
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Have a serious chat with her. Especially about being in bed all day (creating weakness). You might have to do the talk about - your job is to keep walking and doing things around the house (fold clothes, etc). You have a good mind and I should be able to leave here for an hour to handle chores, but your choices are keeping me tied to the inside of this house. I just can't live like this any longer and you are going to live in this house for a much shorter time than you think. When you lose all strength and truly cannot get out of bed, I won't be able to take care of you and you'll end up in a nursing home. Your job is to 'wear' out not 'rust' out like you're doing (that's how my g'ma said it). We also need to hire someone to come in a day per week for now - this person can do some light housekeeping and allow me to have some time away from the house each week.
Close with: So how do you want to do this? Get up and start moving or get in the car so we can take tours of nursing homes. I'm not willing to lay in the bed all day like you and cut myself off totally from the outside world.

I would ask the dr for home-health to start coming and get her exercising and moving. Don't take no for an answer from mom or the dr. Mom needs the strength training and other people in the home.
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From your profile, I understand that your mother is 58 years old and has anxiety/depression/arthritis. These can be debilitating, but are treatable. Is she being treated for any of these issues? Her anxiety and depression can be helped a great deal through therapy and medication. Has her arthritis become debilitating to the point where she is mostly immobilized from it? At 58 she is far too young to be allowing herself to become an invalid, and worse yet, sentencing you to being her caregiver. You are young and need to be working to ensure that when you reach her age, you will be able to care for yourself. Her anxiety and depression are not allowing her to think rationally, so that you must be the "adult" in this situation. She may not have to be confined to a "facility" but she may required to receive in-patient treatment for a short while for her mental health issues so that she can be on the road to recovery.
You and she are enmeshed in each other's lives emotionally and physically (since you live together). Call her primary care physician and report that she is confining herself to bed. Make an appointment for her to see the physician. If she refuses to do so in person, ask if a telehealth appointment is possible. A prescription for anti-anxiety/anti-depression meds may be offered to her. Then it will be necessary to set up mental health care (social worker, psychologist, or psychiatrist---btw, of these providers only the psychiatrist can prescribe meds--but even her primary care doctor prescribes, then the other types of providers can help with "talk therapy"). If she refuses this, then you may have to call 911 for emergency treatment for her mental health at a hospital.
This will be the most difficult thing you have ever done in your life thus far. You need to save yourself, though. She will likely rant and rail against any actions you take. But know that you are taking steps to care for both yourself and her.
Good luck, stay strong.
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Anabanana Aug 2022
Mother is 58?!?!? (I didn’t read her profile) Holy crap, I’m her mother’s age and I’m trying to get back in shape (blew a knee) to rejoin my hockey team. Yes, I am Canadian.

Mental health assessment clearly needed. Mother needs much more than a caregiver. And could continue like this for 40 years.
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First, make sure that you want to do this and that you are not just doing it out-of-spite. This action could potentially kill the relationship that you have with your mother forever.

Do you have another place to go? Is it furnished? Do not expect your "friends" to house you permanently or even long term temporarily.

Do you have a job or savings that allows you to live without depending upon your Mom for anything?

If you don't have the above, then start the preparations to be financially independent of your Mom.

Assuming that you are financially independent of your Mom, what day-to-day kinds of things do you do for your Mom? Do you clean? Do you cook? Do you take care of her bills? Do you open her mail and review it before you give her the "actionable" items? Do you drive her to appointments? Do you keep her calendar? If so, then start looking at alternative ways to accomplish these tasks for instance, Meals on Wheels, bus service, care giving agency, cameras in the house, etc.

Since she is coherent, she will have an idea that something is going on. If she asks, be honest and say that "you are preparing for the time when you will not be able to help her". For illnesses, cite "having a heart attack", "having a stroke", "going to the hospital", etc. If she seems concerned, ask her for suggestions on who could help her if you were seriously ill. It is up to you whether you want to follow up on her suggestions or not. Come up with a plan for every little part of her life that you do for her.

Research what it will take to put her on Medicaid if you think her finances are shaky.

Then when you you have everything lined up, and all the potential problems covered then you can choose a day and leave. Whether you tell her in advance or how much in advance is up to you.

Even if you don't leave, having that resource list and a backup emergency plan will help your mental health.

It is a lot of work. However, it appears that your Mom is incapable of doing that kind of long range planning. Hence you need to do it for her if you want to get out of your current situation.

A thought just flew through my head....Could your Mom be dealing with a major bout of depression or going through a hormone change? I suggest that you find a therapist (maybe through her primary care doctor) and have her diagnosed. Maybe her neediness will wane a little, at least while you get your resource list together.
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Why is she refuses to get out of bed? It looks like phobia, did you get dr opinion, treatments available? Did you get social worker involved?
If you thinking of facility and it takes time, then you must regardless of Mom‘s dislike get some relief and start going out and planning your life. Plan A and B, what would be ideal vs what would be realistic to make it better for you.
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AngieGuido74 Aug 2022
sometimes tho a facility makes your loved one pass away faster. they are either heart broken and think you have deserted them, or not getting the attention they should. i see it happening to these people.
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Well you are guilty in one repsect and feel an obligation in another - right? you need to be firm and if your mother is coherent but just refuses to do anything - you could always faint in front of her (that would show her how exhausted you are) I thought about doing that sometimes in front of my brother he 73 me 76) - he is stubborn and i do alot for him bc others live further away and his daughter has a job etc. it does wear on you. can you get or pay for someone in the neighborhood to sit for awhile? can medicare help you out with a nurse - they do pay? you need to get away even if for an hour (get a massage) your mother will have to adjust who will die first you or your mother??? ask yourself that question. Good luck
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Elle1970 Aug 2022
Faint in front of these people and they will think you are faking no matter how burned out you are. They don't care about anyone but themselves. You could be lying dead in front of the and they would either accuse you of faking or scream at you to get up and fulfil their demands.
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Some realism about “Get Completely Out !!!! ”. Who owns the house? If your mother owns the house, you move out, leaving mother with a list of phone numbers for any help she needs. If you own the house, you go through the process of evicting mother. If it’s a rental, different legal process.

A social worker or therapist might help YOU deal with this, but YOU have to be willing to do it. In the long run it’s no harder than being WILLING to deal with current problems indefinitely.
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CaregiverL Aug 2022
Evict mother? Really? Wow 😮
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