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Mom needs 24/7 care. I have to go back to work. She’s currently on hospice. I have a caregiver for only 3 days. I’ve had to move in with my mom because my brother up and left her, because he has this animosity towards me. I don’t feel safe around him, mom refuses to keep him away from her home, yet expects me to live with her. I’m angry that he refuses to help with her any longer, but thinks he can come to the house and control everything, even the caregiver. I want to leave as he did and go back home, but I feel guilty. Mom will not pay for more help and will not allow any one but me to care for fee at night, she said she will stay alone. However, she can't because she cannot see anymore and has very limited hearing.

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Hospice is usually for people expected to die in 6 months. However, some people have been on hospice a lot longer than that. I appreciate that you want to help your mom AND that you need to work.

Work with her insurance company and whoever is providing hospice to get her the care she needs - especially while you need to work AND at night when you need to rest. Explain that these "helpers" are for you since you are not able to stay awake all night or provide care when you are at work. They are the eyes. ears, hands and feet for you while you are unavailable.

It might be a good idea to set up legal documents to give your power to handle her finances and her medical affairs now - while she is able to make competent decisions. If not, you can pursue guardianship over your mom (which takes more time and can be costly).
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Yes, you need social worker. Somebody objective to explain to Mom all the ramifications of 24/7 care and you having too much work to do. You are not a slave. May i just guess brother is influencing Mom and convincing her you should be doing all the caregiving and saving money? Sorry, I am hoping I am wrong but this happens so often.
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Talk to Hospice about this.
the Nurse or more likely the Social Worker will explain that if she needs 24/7 care and that can not be done at home because she will not hire caregivers and they feel that she would be unsafe one of 2 things might happen.
They would tell her that she needs to go to a facility where she will get the care that she needs
or
Hospice may drop her from their service if they feel that she is not safe.
Maybe if you try to explain that and the Social Worker or the Nurse explains that the only way to continue with the Hospice service and not have to go to a Care facility would be to hire more caregivers that might mean more if it is not coming just from you.

either way make it plain to the Hospice Nurse, Social Worker and your mom that on XX/XX/2022 you will leave and mom will be on her own.
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Maryjann Jul 2022
When we tried to stop the 24-hour care while my FIL was on hospice, we were told that they would report us for neglect. My FIL ended up moving to a board-and-care, complaining all the while about the astonishing cost, so that he could cut costs. He said, "I'll crawl to the bathroom before I continue to pay $5,000 a week for 24/7 care." He had thought hospice would pay for all his in-home care. (He was confused at 92 and didn't understand the doctor. No one would call us and we were 125 miles away.)
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If your mother won't pay for the care she needs, and especially, since she has the funds to do so, it is up to you to make decisions that serve YOUR best interest - as well as 'allow' your mother - out of respect to her - to make her own decisions.
If you feel GUILT, you need to work through this, likely before you can make ANY decisions in the best interest of you(r life) and your mom.
THERE IS NO EXCUSE for a person with financial means to create all this havoc for others, or for others to allow it. If family member[s /you] allow it, they need to deal with the outcome / results of their decision making.
If you do not like the idea - for whatever reasons - of your brother living in the home with your mother, it is YOUR RESPONSIBILITY to make arrangements to move out.
You are making a huge 'problem' out of this due to your unresolved guilt, and not being responsible to yourself, and seemingly believing you are responsible to make decisions for your mother, instead of her making them herself.
Can you imagine how many visiting this site would LOVE to have 'the problem' of a mother having enough funds for 24/7 care of a loved one? Many lovely people are living in nursing homes (my friend is one of them) due to not enough funds to remain at home. You don't know how FORTUNATE your mom is.
Remove yourself. Get out of the house. There is NO reason for you to remain there, except your own unresolved psychological and emotional issues. Get the mental health support you need to dis-engage from this toxic situation. Gena
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Eastflower, tell your mother and your mother's hospice provider that you are returning to work and your home on [insert day and date]. Then do it. If they agree that she is not safe to be alone in her house they should be able to help her source services or respite residential care, which you then use your POA to pay for.

Look.

If your mother refuses the services and is deemed to be capable of making that decision, then the responsibility is your mother's.

If your mother is deemed not to be capable of making that decision, then you can use your POA to make it for her.

Her hospice providers, meanwhile, have a responsibility to their patient. If they feel that her living situation is unsafe, they must take it up with her (first), and if that doesn't work they refer her to APS.

But no one is able to take you out of the picture except you. No one is going to tell you to go home with their blessing. There you are, providing free care, and how is it not in your mother's best interests for everyone else to let that continue? It's great! She's happy, she's safe, she has the support she needs. So of course they won't interfere. If you want it to change, you have to change it.
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She was diagnosed with CRONIC COPD, pancreatic cancer, and a colon tumor/instruction that can not be removed due to the severity of her weight loss, heart issues and COPD. She has been on hospice since June/July of last year, hospitalized at the beginning of 2021 and was f/u with every dr. Under the sun to see what was wrong with her. This all began two and a half years ago. I took my parents to the doctors, ran errands, bought groceries, and was in charge of making sure Mom’s bills got paid out of her account. Sometimes I pitch in $$$…all together this has been primarily since my dad passed a
away. Mom made me the POA in 2021, but dad house and everything to mom in 2018 when he passed. This is there only assist. My brother on the other hand moved in the year dad got very sick at the end of 2017 and said he would take care of him and help mom. In reality he moved in because his girlfriend of 8 yrs. Through him out because his attitude was unmanageable. He spent the next 4 years living w/ mom for free even though he promised my dad he would pay $800 a month to live in the studio apartment they have upstairs. The first year he says he helped pay bills…his assumption was that mom was going to leave the house to him. When she choose to take out reverse mortgage to help her live he totally went ballistic on her and me. It’s been this way since. He has been impossible to work with to help mom, threading to me and abusive and even attempted verbal/physical assault towards me. No he refuses to help with mom AT ALL but he still comes at will to see mom so I leave the house.
so I’m at a loss of what to do. I want to go back home, find a full time job so I can support myself and help my mom have some peace. But she will side with him every time.
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Contact her Medicare carrier or try to get POA to access her funds to pay for more care.
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TouchMatters Jul 2022
Seems like this 'mother' has the resources necessary to stay at home and get her medical needs met. In any case, this daughter needs some distance to gain perspective, and understand her responsibility - to herself - and that mother is responsible for her situation / decision making.
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"The will states that we are to split it 3 ways what ever is left after taking care of moms estate." 3 ways? Do you have another sibling besides your brother?

What have you decided to do, since you have to go back to work?
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Easflower: Based on your profile information, I am unsure why your mother is on hospice.
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If your Mom is able to spend some time alone, you could set up cameras in the house so that you can monitor her from your phone while you are at work when the caregiver is not there. I would set up a port o potty, a small refrigerator with food, telephone, remote, emergency mobile help service with the contact button on the necklace in case she falls, etc. next to her bed or where she sits during the day. Are there any neighbors that could check on her? Maybe your Brother could visit her when you are at work/not there. I would make a list of things he could do while there and correspond with him only through notes or text.

I would try and get additional help for her. You could have them come by and meet her first. My Mother was very resistant in getting help for my Pop in the beginning. After spending some time with a couple of caregivers, she couldn’t imagine being without them. It was definitely a hurdle for my Mom, and me with her. However, after taking many baby steps, we got through it.

You are taking on a lot to do before and after work, and then worrying about her during the day. Hopefully, she sleeps during the night and you don’t have to get up with her. You are going to get burnt out quickly without additional help. I would explain that, explain that, and explain that, to her, until it sinks in. Get emotional with your words if you have to.

If you can convince your Mother to go to a facility, Hospice does have nursing facilities also. Check with them to find out where the facilities are and see if they have any openings. Or, do some research. There are adult day cares, full time group homes, and nursing facilities that even have cocktail hour on Friday’s. Maybe one of them would appeal to her. Make a list of all the reasons why she needs full time care and what would happen if she doesn’t get it. If she is too set in her ways, it’s going to be trial and error each day. It’s very unsettling, but may be the only way to convince her. Best of luck to you both.
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TouchMatters Jul 2022
The daughter asking the question here doesn't seem to want to take responsibility to make the situation better for everyone. She needs to remove herself from the house (fearing her brother, as she says). Perhaps she is allowing her mother to call the shots; this daughter is intimidated . . . she needs to get the help her mother needs. PERIOD END OF STORY. And then leave the house. Move out. If she continues as things are, the toxic environment will continue to drag everyone down - and it doesn't have to be this way. Only the daughter here can make these decisions (apparently).
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I'm sorry you are going through this. Does Mom have the funds to do 24 x 7 care? Are you financial and medical POA?

Since your Mom cannot see and has very limited hearing, I'm sure she is scared that someone would take advantage of her and/or do something to her that she does not want to do. Your brother could also be adding to her anxiety. On the other hand, I'm sure you are burnt out, so done, and want to run.

If she has funds and you have the authorization, see if you can find somewhere to take care of her 24 x 7. Go tour and research at least 3 to ensure that you are making a good choice, not a choice because its is the lesser of all evils. This process will help you with the guilt that I'm sure you will be feeling, if you are not already feeling.

As other people have mentioned, talk to hospice and her PCP to see what options are available to you.

It is possible that once your Mom "moves" away from you, she could die within a year. You don't need and shouldn't need to feel that guilt. You need to be mentally strong enough to "help" her through her journey, carry out her last wishes and deal with anything that comes along with it (like your brother).

Don't sacrifice yourself for your Mom. If you die or become incapacitated, she will be worse off than if you put her into a care facility or get someone(s)/agency to do 24 x 7 care.

Good luck. Talk to Hospice and your Mom's PCP and see what options are available. I feel for both you and your Mom. Both are you are at a very vulnerable time of your lives.

P.S. If you find this all overwhelming, then try and get a therapist to help you through this part of the journey of your life.
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TouchMatters Jul 2022
I don't see it as 'sacrificing' - I see it as (she says) feeling guilt and unable for whatever reasons to make healthy decisions for herself and her mother. She is fearful, not sacrificing. A person being a 'door-mat' has self-esteem issues and much depends on the history of the daughter and mother dynamic for 'all of the daughter's life.' A person doesn't wake up one day and allow this to happen. The daughter needs to get the mental health support she needs to make sound decisions.
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The first thing you should do is discuss your LO’s needs with Hospice. They are a fantastic resource that it sounds like you have not fully utilized yet.
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Remove yourself as an option, but do call Adult Protective Services for her so that she can get placed appropriately: they will inform her of how it will be paid for (again, take yourself out of the equation). Let her know that you will be a helpful visitor if she chooses a place near you. Sounds like your mother has taught many lessons to her son about controlling people and situations. Sounds like she taught you to take orders and guilted you into accepting your fate.

Instead of living at home, in this familial situation, perhaps there are hospice facilities that can accommodate her needs while freeing you up to love her without living with her. https://hospicefoundation.org

I just put the name of a little paperback here, "When I say NO, I feel guilty."

Make plans to make the most of your life while you help ease mom's transition with words of love and gratitude............perhaps you can visit and read to her (does she have a favorite author or topic?).
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Eastflower - My heart goes out to you. In reading all the responses, you have some great advice already. In my experience, everyone will have their own opinion of how you handle things regardless of what you do or don’t do (relatives, mom’s friends, your friends…). Hold your head up high, do what you know in your soul is right (I am of the opinion that you must take care of you first), and keep moving forward.

Hospice is a powerhouse of resources- you may consider asking the social worker for resources to help you through this process. They can’t comment on family situations, but they can connect you with valuable resources. Believe me, they’ve seen and dealt with far worse so it won’t be new to them.

None of this is easy, but you will get through it. In the process you will learn some things about yourself. It’s clear you are a loving, smart, honest person who just wants to do right by mom in a very tough situation. There is no perfect way to do it. Do the best you can, give yourself permission to take care of you, and know that the love you have for your mom transcends all of this minutiae that is happening in the last stretch of her life. 

I’m cheering for you.
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Your first priority is to take care of yourself and your family, - you can't take care of others if you get ill./ What you are doing is enabling your mother at your expense. As long as you do that you are stuck. Do you have POA form health and finances? if not, does anyone? You should look into that and consult with an estate attorney, Since your mother is in Hospice care I would talk with the Hospice nurse and also their Social Worker to work out some options to get some assistance. Hospices usually have some home care people who come out several days a week to help with the patient -things like bathing. [i presume you are paying for the caregivers you currently have?] Consider getting some counselling for your self [the Hospice staff should be able to recommend someone] How far away do you live? Set up a schedule for visits and stick with it [other than for emergencies]. Let your brother know your schedule and discuss that he can visit on other days.
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In the condition your Mom is in, I would say Hospice rules mandate that someone be with her 24/7. To be on Hospice a doctor has said she has 6 months. You do not leave a dying person alone.

If you must go back to work then there will be no choice but for Mom to pay someone to be there if Hospice mandates it. Hospice may be able to give her an aide for more hours. Mom may need to be placed in a Hospice home or LTC. Tell Hospice that you have to report back to work. Whoever is POA will need to be informed that if no one can be available 24/7 that caregivers will need to be hired.

I did respond to Nancy but I will repeat it...Medicare and Social Security do not except DPOA. To deal with SS you must become a payee. And, there is really no dealing with Medicare. Medicare is billed by a provider. Medicare pays 80% of what they feel is reasonable and the 20% is paid by the patient or their suppliment. Very rarely does Medicare make a mistake and they will tell u that. They don't make mistakes.
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Babs2013 Jul 2022
With the Representative Payee no one can take that away once its signed to a person. I know this true because I am a rep payee for my BIL. Social Security told me that no one can get a hold of that person's money unless you give it up. So no POA's for financial can get a hold of that money. And I know this from fact too because of my BIL's family wanting to get his social security money or know what he makes I don't let anyone know how much he makes and they can't get any printout of the bank account.
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You do not HAVE to live with her, that is your choice. Change your mind, get back to the day to day business of living your life and planning your future.

Get your ducks in a row, tell her that you are moving out, she can either have her son move in with her or go to AL pick one. Give it 90 days and go.

She is refusing because you do everything for her, good deal if you can get it.

Stop torturing yourself, move on, you have done your part.
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She refuses to pay caregivers because she has you for that. She doesn’t care how this affects you. Stop being available and she will have no choice
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Easflower Jul 2022
Thank you I need that affirmation of needing to declare I have a right to my own life. My mother has always been very manipulative with the way she treats my brother and I. I can not talk with him about anything because he is very abusive verbally and mentally. I am power of attorney and I know I can not do more than I already am. I feel trapped in a nightmare with my mother and brother determination my life for me. I’m done with it.
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I assume that you are not her Power of Attorney for medical and financial matters. Is it your brother? If so, then he is responsible for overseeing her care. The decision to be her caregiver goes two ways. Your mother may prefer you, but you have to agree. You are entitled to your own life and your own pursuit of happiness (it's in the Declaration of Independence), and although it says "men", in today's world it also means women. You are entitled to make decisions about work so that you can prepare for your own career and future. That being said, there are programs that pay family members for being caregivers. Would that make a difference for you? Connect with a local social worker to find out about these programs and what kind of assistance you can get for your mother and yourself. If you mother is blind, she's also entitled to disability benefits. I hope that you can have a discussion with your mother to tell her that you have to go back to work, so that you'll have a future. Offer to help her when you can. Offer to help her hire aides that can take over during the times that you are not there. Are you able to talk to her hospice manager? Hospice provides services and medical equipment, if needed. Ask them for advice on how to handle the situation. Ask her Hospice aides to call you if there is an emergency. When my mother was on hospice the hospice aides were very good at knowing when she was in her last days. It would be best if your mother's paperwork were in order, if it's not. She needs to set up Powers of Attorney for medical and financial matters, a living will, and a will, if she has assets. It would be best if you could help her do this in cooperation with your brother, and with an attorney (some of them will come to her home to get the signatures). I was able to do a lot with an attorney by email, once I knew what was wanted, so that the only actual visit was for the signatures. The POA needs to be on file with Medicare and Social Security to be able to speak on her behalf. If your brother is being uncooperative and threatening, be prepared for a battle over any inheritance. How are you paying for your rent and expenses while you are caring for your mother? Perhaps you also need to have an arrangement with her for some compensation, until you straighten things out.
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Easflower Jul 2022
Thank you Nancy all that you have suggested it good advice and not the first time I’ve heard it. I’m just feeling so guilty and depressed at the situation I’m in. I am the power of attorney and that is part of the problem my brother has. Also that he thought he felt he should have the house and any money too. My mom has an LT AND WILL, thankfully, I need her to accept that my brother and I will never be make amends. It’s to late for that.
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I'm I'm correct here, your brother is toxic and yet he has your mother's blessing to do as he pleases in and out of the house. That's a problem that's not going to go away, so you need to work around it if possible.

Who has POA?

Do you have POA? If so, then hire an overnight caregiver and don't ask for permission or approval from your mother or brother.

If your brother has POA then he gets to run the show.

If there is no POA, then try to get one signed over to you while your mother is still mentally competent.

If your brother is putting up road blocks to everything that you try to do to insure your mother's safety, then your options are limited without a POA.
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You don't say if Mom is on Medicaid - if she is petition for more help. In this case I suspect she is private care. Who has POA? If you do, hire more help that you feel will be a good fit for Mom, and pay out of her funds. Just tell her it's part of hospice - it's a white lie that is necessary here. The bigger issue is your relationship with your brother - there are missing pieces to this puzzle. Why the animosity? I ask because there is the possibility he will return to the house once you get back to work. If there is any way to mend this rift, I would suggest you try. The goal here is for peace, comfort, and proper care for your Mom.
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Easflower Jul 2022
NYCmama
i have tried to mend the issues with my brother. He has been jealous and vindictive since my mom took out a reverse Morgage to pay for her care. My father left the home to her for this reason. My mom asked me to research them so I did, she asked my advice… I told her that neither my brother or I had the resources to help her if she needed care. But when my dad got sick, very sick, my brothers girlfriend asked him to leave her house where he had been leaving, so it was an easy in to my parents house. When dad died, my brother wasn’t paying rent as he promised my dad he would ($800 a month, which was nothing) to help mom pay bills. Instead he chose the bills to pay which were nothing that he was supposed to pay, and in return he wanted my mom to give him the house. But she did not do that in the will. That infuriated him with hatrated towards me. This was my mothers choice not mine. So her we are today two years later just so stressful and overwhelming. I told him we can work things out later, but he feels I’m going to cheat him. The will states that we are to split it 3 ways what ever is left after taking care of moms estate.
mom overwhelmed with spiritual loss, mental and physical misconduct, taunting and scare tactics. I don’t know what to do.
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“Only” children, or daughters who are abandoned by siblings, have to learn to be VERY CAREFUL when they begin to think, or WORSE, are TOLD by other “loving” family members, that they “have to”.

Your mother has two children. One of those children has bailed out, and the other is being deprived of her life by self imposed guilt. YES, SELF IMPOSED.

If God forbid you became unable, for any reason to be your mother’s current caregiver/servant, do you know what would happen to her, and who would be LEGALLY responsible for her care?

FIND OUT. Whether you decide to act on the information you get, or not, informing yourself can be empowering.

ALSO, find out what residential care sites are available in your area. If your mother NEEDS the 24/7 care of people being trained and paid to do this, you OWE it to her to find a way to provide it FOR HER.

You have responsibility FOR YOURSELF. YOU are important too. Take steps to restore balance for her, and for yourself. The smallest step forward can be a big step for you both.

Time to stop allowing your brother to manipulate you, and stop neglecting your mother. Best of luck in taking the first step.
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Easflower Jul 2022
Thank You
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Most states and communities have an organization that will check elders to see if they need different care and/or can live independently. Your hospice should be aware of this and give you the name. The hospice staff as well should have a pretty good idea of her independent functioning ability. Talk to them; they hear all sorts of stories in their work. They will have seen various solutions; you can ask for a supervisor also for more information. The police almost certainly have the name for the elder care department, call them as well and ask for the person in charge of wellness checks. I would also discuss your concerns about personal safety with both of these agencies. Oddly, or maybe not, your mother's congressman's office should have some information. Also, the county commissioner, whatever the local name is, will have some information. A good nursing home administrator or assisted living one will have LOTS of information about this sort of thing. AARP will have a help line. Among the considerations, the way the POA takes care of the elder will be a big one. If I had no sight and limited hearing, I would be pretty frightened of new caretakers. Can you bring a caretaker in before you leave, for a trial? You don't have to deal with this alone, get some help.
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After my parents became somewhat infirm, they expected three daughters to serve them hand and foot. After a few months of this, we told them we would not do it anymore and he would have to hire caregivers. My father in particular was unhappy to have strangers in the house. But with us refusing to continue caretaking, he had no choice. He knew they could not go without someone serving them, and he got over his reluctance.

I think you should put your brother aside unless you think he is a risk to her well being. Leave. Perhaps arrange for wellness checks (I don't know how that works). She's in hospice so she will haven nursing attention a few times a week. You might also talk to the hospice social workers for help. They may also be able to determine what her mental state is.
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Mom cannot make her own decisions POA is in charge. Someone but her is in charge of the money.
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"I am caring for my mother Marie, who is 83 years old, living at home with age-related decline, anxiety, arthritis, broken hip, depression, hearing loss, incontinence, mobility problems, osteoporosis, sleep disorder, and vision problems."

What is qualifying her for hospice?

More info, as noted below, would be helpful.
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HILLARDMH Jul 2022
i would contact your local Hospice if there is one, if not your local Dept. of Agency. Normally the prognosis if for 6 months [but this can be longer depending on how the patient progresses. There might also be a program offering palliative care
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Maybe I'm missing something. You moved in because your brother up and left her. I'm guessing he's moms POA? Whatever the situation is I hope you're able to find resolution for mom. Best of luck
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So you chose to move in, to help as Mother was in need. But this is not working for you as you feel unsafe. If you go, Mother will be alone.

Staying somewhere you feel unsafe is a deal-breaker to me. But I would try to get Mother as safe as she allowed before I left.

Not to disrespect your opinion, but I guess I would get an opinion from her medical team about staying alone at night. Does she get up for the bathroom? Is her sight impairment new? Or has she been long used to moving around her home in the dark? Does adequate lighting help?

If she CAN safely stay alone at night, then go. Make a welfare call to her in the mornings.

If not, this will need to be discussed with Mother. Then a night carer arranged. She many not like it but I'm sure there are many things she would love to change if she could. This is just how it is.

If she is mentally competent, she DOES have the right to take risks. To refuse care.

But she does NOT have the right to instruct you to stay.
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Easflower, we really need for information. How long have you been doing hands-on care for your Mom? How long has your brother been doing the same? How many hours do the caregivers work?

What is the reason for your Mom being on hospice? You mention she cannot see anymore and has limited hearing, but those two items wouldn't put one into hospice.

More info will help us figure out the situation.
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