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!
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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?
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?
She has made these choices with her living conditions. You and your well being should not be involved with all these circumstances. If she chooses to threaten you with her demise than that is also her choice.
I have a mother who has lived her life very differently from how I have lived mine. She has made some poor choices. She is 90 and now in a nursing home after a severe septic infection has made her immobile. She spent 7 years in AL. Her LTC policy has now run out. I don't know what we will do if she survives her remaining funds. I do advocate for her because she follows my advice now but didn't for many years. I am only stating all this to make you understand how difficult I realize your situation is. As I stated if she is only 70 you must have alot of life ahead of you. I am 64.
I hope you come to a decision and are able to follow through with it. You deserve your future.
My mom doesn't qualify for Medicaid so it seems like there are no easy solutions.
I did make come calls today and she is able to have hospice come to the house.
Thank you so much, I hope so to!
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.
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.
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.
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.
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.
I think I read that you are only 27. Save yourself! Refuse to give in to her demands! Stay strong! Only you can save yourself just like only your Mom can save herself and, sadly, she has chosen not to do so. My best wishes to you.
I'd tell her to start making her peace with God then.
Don't let the guilt trip force you into taking on a situation that you cannot handle on your own. You mention mom not allowing anyone to help out and that she expects you to do it all for her on your own.
No. Let me tell you something that I have said many times to people taking on an elder caregiving situation and I've been in this line of work nearly 25 years. The only way caregiving can work is if it's done on YOUR terms not theirs. It has to be this way otherwise it will not only take over every part of your life, but you will have no life at all.
Tell your mother directly that if it is her wish to stay out of a nursing home then you will do your best to keep her out of one if she will abide by your terms. Part of those terms are that she will accept help and services not provided by you and will accept them graciously. There will be no abusive and bullying behavior to force them away. Nor will there be any of the other elder instigating tactics like accusing someone of stealing even when you know they're not, to start up a fight so they refuse to help out. Also that she will be spending several days at a time with your uncle and his fiance as their guest, to give you time to yourself. Make this very clear to her.
Then she will make the choice for herself. Either cooperate with what you're offering on your terms or go to a nursing home.
Part of my terms would have to be not living in my mom's house, because the level of dirt and mess and clutter is just too much for me to handle. I was willing to help clean it for her, the local disposal services have large dumpsters available for rent so I was hoping I could plan a day for me and some relatives to help clean her house but my mom won't budge on that. She will agree to go through items one by one to choose to keep or donate/throw away, but with the amount of stuff it would take a very long time to go through everything.
And honestly there is so much that would need to be done to get the house to livable conditions, so that's why I thought it would be more worth it to sell the house and move to a smaller more manageable place, which she agreed to while she was in the hospital but as soon as she got home she went back on that.
The only things wrong here are that your mother is narcissistic, selfish, and manipulative - and you are enabling these behaviors.
The woman is emotionally abusing you. Time to put your foot down and set some boundaries - starting with moving out of her house.
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.
Best wishes to you!
Makes perfect sense, actually. Someone who has spent a lifetime making choices suddenly doesn’t have the options they want and is stuck with the options they have. It sucks. Your mom wouldn’t be human if she didn’t resent the changes life beings, the loss of control. But being human is not a get-out-of-jail-free card. Because you are a human, too.
Setting a date to move out and sticking to it is a good start. Maybe you can offer options. “I will need to leave on X date. I did some research, and here is the name of an assisted living facility, the name of a Hospice agency, the name of a well regarded home care agency, and the name of a place (like Everything But The House) who can come in and take care of a living estate auction.” Or just present the options: hire someone else for in-home care, downsize and move to assisted living, or have hospice come in. They being a social worker to evaluate what help is needed, they can arrange for Meals in Wheels, etc.. Noticeably absent on that list is having you stay past the date you set.
1. Is there just one sibling, your sister? What does she say about all of this?
2. What are your mother's finances, and why won't she qualify for Medicaid?
My sister seems to think since I agreed to go to my mom's house at all that I agreed to stay, even though I never agreed to staying long term and was always upfront that it would be temporary. My sister said that I can't just try it out for a few weeks, decide I don't like it, and then leave. She said I know what mom is like and I should have known what I was getting myself into and that I should have known my mom would go back on agreeing to sell the house and downsizing. It seemed like she was implying that if I move in at all that I'm agreeing to stay for as long as my mom needs me for. But I'm not going to leave out of nowhere, I'm not going to leave my mom alone, I'll only leave when another plan is in place.
My sister also says it would be good for my mom to have hospice at home. All the advice my sister gives seems to involve me staying at my mom's house, she keeps saying about me finding a way to take a break, but I don't want just a break, I already know I can't handle being my mom’s live-in caregiver, I want to help my mom but in ways that’s sustainable that I’m capable of.
(I admit that I may be interpreting my sister's words wrong, but we are not very close and we have very different personalities and I don't think she likes me very much)
I don’t know my mom’s finances. I’m guessing she doesn’t qualify for Medicaid because she makes too much from retirement.
Otherwise, one emergency could turn into another, and you would be stuck longer than you ever thought possible.
You are YOUNG. Get out and make a life away from the chaos.
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!
It might be most appropriate to call the County about the living conditions. If they condemn her home, then she must move out. If they don't, you should move out anyway since the conditions are not conducive to anybody's health...
You can also try a call to either Adult Protective Services or your local authorities on their non-emergency line. It seems your mother needs to be treated for her mental health issue - most likely as an inpatient on a medical psychiatric unit and you need to work with social work for her placement in a long term care. residence. While she is in the hospital, get their legal team to meet with her to draw up POA documents for legal and medical. If she refuses, let social work know and the courts can appoint a legal guardian. When she is placed, either the POA or the legal guardian can get her place cleaned out and dealt with.
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.
I can find some hope. I know there is a way through for you as well. Hold on my friend, we will get there!
Find another way to deal with your interactions with her. You say she is manipulative. So what? If that is her way, for whatever reason, then that is her way. There are ways to deal with that just like there are ways to deal with other people and their personalities.
Get other family members involved in coming to a decision of how best to help mom. You cannot just walk out and leave her to her own devices. Contact services in your community. There is help available that enables you to get back to your life. You can go back to being her daughter instead of her caregiver.
I know what it is like to be a caregiver. I've been there. It is tough, very tough. It ages you and is stressful to the nth degree. Wouldn't wish it on anyone.
But she is your mother no matter how difficult she may be. She is still your mother. You only get one. Walk away from her when she needs you and you will regret it to your grave.
Do the right thing by her and make sure things are good with her with the help of services available. No matter what, she is your mom.
When it comes time that I would need the level of care that my mom currently needs all I hope is that I wouldn't put all that on one person 24/7! I hope I wouldn't put all the caregiving, cleaning up a hoarded house, and all the planning and arranging, on one person, and tell that person that I'll die if they won't do it.
Yes my mom can be as manipulative as she wants, just as I'm allowed to have all the boundaries I need about how people interact with me.
My mom has pushed other family members away, and I only just got her to start talking to my sister again, she had been ignoring all her calls up until yesterday. And my uncle still isn't talking to her because of how she treated his fiancé.
My mom's house being in the condition that it's in and her not budging on letting me make plans to clean it efficiently (which I am willing to do) also really doesn't help. Part of how I manage my depression is keeping myself and my environment clean. When I first got here the shower wasn't even usable, so I couldn't shower or help my mom take a shower. But I cleaned it up and got a new showerhead so at least there's that. Now I'm trying to get through the piles of junk mail throughout the house because thankfully my mom doesn't argue with that as long as I scribble over her name and address with a sharpie.
When I posted the question it was right after trying to plan to get my mom's house cleaned to which she wouldn't budge so I wasn't having the best outlook at that particular moment. I was sleep deprived from being woken up multiple times each night, I was upset about the living conditions, I was just feeling really hopeless and desperate in that particular moment, and my patience was wearing out. I could have written the post more compassionately and sympathetically to my mom's position but I was just in a bad mindset when I wrote it.
And I know if I left I would have regrets, I'm still feel very conflicted on what to do, being so indecisive just adds to the stress and not handling the situation very well.
My mom was put on hospice yesterday which she feels good about, and my sister (who is a hospice case manager nurse) is going to call later today to see if she still feels good about that decision and just discuss it all a bit more.
My father pulled that on me ...just once....I let him have it with both barrels saying something like that to me. That is the problem...you are afraid to stand up to her. She knows she can manipulate her. My grandmother when she did not get her way would shout "Well I'll just take poison then"....my response was always a very emotionless OK. Took the wind right out of her sails. If your mom says something like that...agree with her and tell her she is right, that will happen if SHE doesn't do something about it. It is not your job to fix her life. It was great that you came and stayed for awhile...but that was temporary. And now you tell her you have to leave on the 31st. You will help her locate other assistance...but the key words are HELP HER, not do it all yourself. The more you help the more helpless they will act.
Now pack your bags and leave, tomorrow. Stop delaying your departure, it just makes it more difficult. No matter what date you set your Mom won’t believe you mean it. Only you can make the decision to move on with your life. Good luck.
I suspect your Mom has recognized that she is facing her end and is terrified of having to make a decision.
She needs to understand that running someone off by accusing them of stealing is not helping her situation or your own. More than likely, it served her purpose to have you be sole provider of her care. If you aren't going to do it or can't do it, she needs to know that straight up.
Why can't she dispense her own meds from her bed? You can put them in daily dose containers and she should be able to take meds. Instead of trying to wheel a chair back and forth to bathroom, can you put a bed side toilet in her room in a way that she can just get out of bed, hang on to toilet and use it. There are also back flush toilets that can be installed bedside that go out wall and hook onto the existing sewer lines - possible option so you don't have to clean a bed side toilet. I found a place where you can buy a raising chair to put someone in the bathtub and then lift them out. Best money I ever spent. And a total submersion bath is much better than sitting on a bath chair being hosed off.
Does she have any rehab going on at home to get her on her feet again? Dr can order PT and OT for her to help regain strength and walking on her own...if that's possible.
Overall, it would be best to move her nearer to you - nursing home or assisted living if she can be rehabbed to do more for herself again. You would also be able to get rid of the hoard and get her into a safer, cleaner place. Then hire housekeepers to maintain for her - or you do it.
You just need to have a discussion with her and come up with a plan that involves what you can do to help - while not being the 24.7 caregiver. If she deflects about dying, you bring conversation back to something constructive. Best words I found to get back on track - That may be, however....(go back to conversation). Good luck
Move forward and make a choice that you can live with. Aging is a lose-lose situation for all of us. We don’t want to see our parents decline.
You can’t give your life away just to please her — it sounds like that wouldn’t please her anyway. She will learn to adapt over time. Be understanding - she is going through a lot of loss—- but she will have to compromise and she will have to be understanding too.
This is not your fault. Only make changes that you can be happy with.
As for the rest of it, inform her you will not help her anymore unless she is willing to help herself. It is time to grow up and put the big girl panties on. Resist her bullying and manipulation or she will make a slave out of you. Been there done that.