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irupop Asked January 2021

I can't handle being my mom's live-in 24/7 caregiver. What do I do in this situation?

I asked this yesterday but I panicked and deleted it. I'm very sorry about that, but I'm starting to feel hopeless/desperate, and sorry for the length as well!


I agreed to stay at my mom’s house temporarily to help her recover from recent hospital visits and ideally help to get her house ready to sell and move to a smaller more manageable living arrangement (whether that be a smaller house or apartment nearby where I live, or a nursing home if that’s the level of care she would need.) Since the first stay in the hospital the only option she is considering is me being her live-in 24/7 caregiver. She keeps saying, “either you take care of me or I’ll die.”


My mom is 70 years old with severe COPD. She had acute respiratory failure in October, and two more times since then, and each time was intubated and close to dying. Since the first hospital visit she hasn’t been able to walk very well either, she injured her foot and can’t put much weight on it and she gets short of breath really easily with any exertion. She needs to be taken in a wheelchair to the bathroom and all her medication and meals brought to her, so she needs 24/7 care.


My uncle’s fiancé was willing to help take care of my mom whenever I needed a break, but my mom doesn’t trust her at all and accuses her of stealing her things. She was so upset because of my mom’s accusations she left crying (after driving from an hour and a half away, 70+ miles one way) the day I was supposed to get a break. Because of this my uncle is currently not speaking to my mom and his fiancé is no longer willing to help take care of my mom in her house, but would consider letting my mom stay at hers' and my uncle’s place, but my mom declined.


No other relatives will consider staying to help my mom either, which is completely understandable considering that on top of her being exhausting and manipulative, she is a hoarder and her house is unlivable to anyone else but her. The excessive clutter is one thing but the house is just so dirty. Even when my mom was capable she never maintained cleaning the house, it’s always been cluttered and dirty, accumulated for almost 40 years. It’s really overwhelming. The room I’m staying in is thankfully a bit cleaner but that room and the rest of the house is infested with spiders and the whole house is covered in spiderwebs.


My mom is also avoiding having important conversations, like updating her will, what her final wishes are, what funeral home she wants, and my sister getting POA (since she is a nurse we think it would be good for her to have POA). When I last tried to bring these topics up, my mom said that she is a thread from death and by stressing her out with these topics I’m pulling her closer to death.


As much as I want my mom to agree to a new living arrangement, I don’t know if she ever would, and she does seem to be doing better at home in the environment that she is more comfortable in, despite how unlivable it is for anyone else. It makes me really conflicted because I hate being here and more and more often I'll suddenly start crying and feel unable to handle it. I also have anxiety and depression which are a lot harder to manage in this environment and being unable to maintain my usual routine. But at the same time I could see my mom’s health declining even more drastically if she was to move out of her familiar environment.


I’ve been here since Nov. 28th and I don't know how much longer I can handle. I don't know what I should do, just that whatever the long term solution is, I can't live in my mom's house.


Thank you for reading and for any advice given!

AlvaDeer Jan 2021
I am afraid you are going to have to not buy into the threats and blackmail. You will have to understand if Mom were more herself she would not want you to give up your own life for her, but would want you to have your own quality life, living in your own home with your own work and your own family.
Wouldn't she?
If she wouldn't, then, in fact, that is a shame. I understand you love your Mom, but you will now have to take on the grief of telling her that you cannot be all things to all people. That you must live your one and only life. That you will help her to do the best she can for her own care for the time that she has left, and will assist her when you are able.
This is, unfortunately, going to have to be YOUR OWN CHOICE for your OWN LIFE. You can lay down on the altar of sacrifice. Momis 70. Even with COPD, with good care she could go on easily another decade. Or you can accept the grief and pain of telling Mom that you have made the decision to carry on living your own life. That you cannot be responsible for her 24/7 care.
In the end, only you can make the decision. If you are asking to be able to make it without grief and pain for both yourself and your Mom, then I am sorry to tell you that nothing can be fixed to that extent.
Be as kind as you can. Tell your Mom you are sorry for your own human limitations, but that she didn't raise a Saint. If she had someone would have shot you full of arrows and now be praying to you to fix everything for everyone for eternity, anyway. Bad job description. So is Martyr. So is Sacrificial Lamb. Tell her you will do the best you can; you know she will be hurt and angry and depressed. And you will be hurt and depressed about it at times as well. But that you have had to make a tough choice for your own life.
I have to tell you I would never NEVER put this on my daughter. Never. I would go off a bridge first.
PAH321 Jan 2021
AlvaDeer - You truly have a gift for putting your caring advice into words. Your response was very helpful to me as well, and I wanted to let you know.
funkygrandma59 Jan 2021
Since you nor anyone else is mom's POA, you don't really have much of a say what your mom should or shouldn't be doing. However you have every say about what you should be doing, and that is first and foremost taking care of yourself. That will most likely include you moving out of moms house as well, as by you staying there, it is not only enabling her, but it is also allowing her to not face the fact that she needs more help than you can provide. And also by you leaving, it will force her to make the major decisions she's been putting off because you were there. Once she has no one to assist her, she will hopefully come to the realization that she needs to make some major changes. It should be a wake up call for her. Only she can make those decisions for herself. So please take care of yourself, and give mom a 2 week notice that you will be moving back to your own home. Good luck.
irupop Jan 2021
Thank you, giving my mom a 2 week notice that I will being going home is what I plan on doing.

I am a bit scared that she will say something along the lines of, "Okay, I guess I'm dying in two weeks then" or something along those lines, like she keeps saying if I don't take care of her she'll die. But I just have to not let her saying those sorts of things get to me and hopefully she will accept other help and make those major decisions.

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Daughterof1930 Jan 2021
You’ve received good advice already. I can only say I’m sorry because a loving, caring mother would never, no matter her physical illness, threaten her adult child with “you’ll take care of me or I’ll die” That’s beyond manipulative and mean, and you deserve better
BurntCaregiver Jan 2021
You're absolutely right. My mother has tried pulling that on me as well. My response is "Start making your peace with God then". She thinks about that for a minute and realizes that I will not be manipulated and gaslighted like I was a child anymore. I hope irupop realizes what mom is doing and stands up to her.
Omobowale Jan 2021
I moved in with my parents a year and half ago. Today I picked up keys to an apartment...10 min away. I returned from an overseas job...mostly out of guilt from a family member. It was NOT a good idea. My father is frail but his mind is sharp. He has always been a “controller” and certainly doesn’t want me running his house. My mom has mild dementia but is strong. They really only need a caregiver—which my father didn’t like paying. I came free (to them). My mother never liked me moving in. Of course all this (“we didn’t ask you to move back”) came out AFTER I had given up a job 5000 miles away and had arrived!! The adjustment was horrible and I cried daily. I was able to get a part-time job and learned to exist. The pandemic made it worse.

After listening to MANY videos on codependency and narcissism, I decided that the manipulation from family members and my parents needed to be addressed. I set boundaries. And then I decided to move out (with sufficient notice). I have agreed to continue to do meals for dinner and I will continue to grocery shop and drive them to appointments. They will need to hire someone for anything more.

They have opportunity to go to our local VA home...which is on a beautiful property...close to their home. I think socially they would both be better off there. And as their physical/mental health declines, they would have proper care.

Just because someone is elderly and needy doesn’t mean they get to manipulate and demand from family members. Sometimes we
need to walk-away... even if it is in part.

You need to make sure your needs are met.

Best wishes.

Countrymouse Jan 2021
You need to decide when you are going home, tell your mother, your sister and any other key family members the date, and then do it.

You don't have any authority to make a sustainable or even feasible care plan for your mother, and you do not have any responsibility to be her sole care provider. The person who is responsible for arranging your mother's care is your mother. If she wants people - other people, not you - to help her with that, then she must give them the authority to do it.

Nothing will change unless you remove yourself from the equation. You are making it possible for your mother to refuse better alternatives.

It is not true that she will die if you leave. Your mother is merely expressing the strength of her feelings when she says that, which she is entitled to do; but what we're talking about is practical realities.

She's on oxygen, is she?
irupop Jan 2021
Thank you so much for the advice!

Yes, she is on continuous oxygen, 2 liters. She also uses a trilogy machine when sleeping and whenever she's short of breath.

Would January 31st be a good date, and enough time in advance?

And when I give them that date, my mom and other family member will need to have something in place so she won't be alone when I leave?
MargaretMcKen Jan 2021
Your mother will die eventually, no matter who takes care of her. She has serious medical conditions that need nursing assistance around the clock. You can’t do that.

Your agreement was “to stay at my mom’s house temporarily to help her recover from recent hospital visits and ideally help to get her house ready to sell and move to a smaller more manageable living arrangement”. Your mother has broken that agreement. You can’t live up to it on your own.

Your mother has alienated everyone but you, including alternative caregivers. She won’t take responsibility to allow the reasonable management of her affairs. She has made her own house unlivable. You can’t persuade her to change, and you can’t force her to change. You aren’t in charge of this situation. You can't force other family members to step up, either.

CM may be right, and your mother may choose to change if you stop propping her up. Or she may continue to resist any alternatives, and die sooner than would otherwise happen. She doesn’t seem to be enjoying anything about her own life, but please don’t let her choices ruin yours.

cxmoody Jan 2021
You are CLEARLY at the end of your caregiving days. Your mother is being manipulative.

You can do A LOT of things for your mother and not be her 24/7 live in caregiver. You can make appointments, arrange for transportation, order supplies, etc. That’s IF you have the time and/or ability to.

You matter, too.
Best wishes.

NavyVet90 Jan 2021
Oh, irupop, you are so young. Don't sacrifice your life for a mentally disordered, selfish parent. Been there, done that. Time to step out of the F.O.G. Don't let her guilt trip you. It is manipulative and you have every right to call her bluff. Hoarding and narcissistic personality disorder are both mental illnesses. My father had both as well. His apartment prior to AL was disgusting! He was also stubborn and non-compliant (refused to follow doctors' orders or take his meds.) All of his health issues were brought onto him by himself alone. No one else to blame. He chose to be miserable and blamed everyone else for not being able to do as he pleased. He expected everyone to drop everything and wait on him hand and foot instantly. Heaven forbid when he didn't get his way.
Your mother sounds like she expects you to do everything on her terms and is not even grateful for all you do/have done to help her. That will only get worse and is not realistic or sustainable. Move out, tell her to accept help from other sources or you will walk away. If anything is going to kill her sooner than later, it would be her unsafe, disgusting hoarded house. You have a couple of options if she still refuses to see the light of the situation: Call APS and have them check out her living situation as she is an at risk senior in an unsafe home that cannot take care of herself or the next time EMTs take her to the ER (they will see the living conditions as they try to navigate a stretcher through her house), tell the hospital social worker she cannot go back home living alone "Unsafe Discharge" and that they will have to place her directly to a NH or LTC. Yes, she will hate it and be mad at you. Doesn't matter, it is for her own SAFETY. If she starts bullying and threatening you, either Grey Rock her or walk out the door. Don't listen to the guilt trips, step back from the situation, set boundaries, and go live your life. Maybe she will change her tune, maybe not. Remember: No Guilt! She does not have the right to be abusive and you have EVERY right to NOT be abused. Good luck and take care of you.

Dolciani Jan 2021
My father was diagnosed with COPD a and lived with us for almost 5 years. He was on 3 liters of oxygen 24 hours per day. He lived to be almost 98. Your mother could survive another 10 years so don’t throw your life away. The person caring for your Mom should have the POA. Does she also have a DNR? If not, she should. It sounds as though she would qualify for Hospice - all it takes is a doctor agreeing and signing the necessary papers. Hospice would give additional aid, nursing care and possibly have room in one of their facilities to care for her. They don’t provide 24 hour at home care (that could cost $25 per hour). They also provide a social worker that could help make some decisions.
Unfortunately, as elders get more dependent, their survival instincts kick in and they can think only of themselves and their needs. Be glad that you agreed to only temporarily care for her and get back to your own life.

notgoodenough Jan 2021
"I also have anxiety and depression which are a lot harder to manage in this environment and being unable to maintain my usual routine. But at the same time I could see my mom’s health declining even more drastically if she was to move out of her familiar environment."

You poor woman. My daughter struggles with anxiety and depression. I would never, ever put her in a position that would make it harder for her to deal with it. Shame on your mom, and quite frankly, your sister.

Are you seeing a doctor/therapist for your own health? If not, before you deal with giving mom/sister an ultimatum, please find a psychiatrist that can help you maneuver the emotional onslaught that is going to occur once you leave. Because if your mom is manipulating you now with success, I predict that's going to be nothing compared to what she's going to try to pull should you leave. I don't know how easy that would be on someone not struggling with anxiety and depression; I think you will really need a lot of support - a lot more than you need from an anonymous on-line forum - and a doctor will help you take care of YOU!

Good luck!

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