Sacrificed to the fiery volcano of parental caregiving. How do we escape?

[pitterpatter]

I don't now how many of you remember my post from last July. Since then, life has gone from bad to nearly unbearable. Then, after many months, came a little light. Our family started to find pockets of happiness again. And now, we are on the brink of being thrown back into the volcano. We can't go back. I'm afraid we won't survive this time. No one cares. We are the sacrifices. How do we escape? How?!!

This might sound dramatic, but anyone who has been a high-needs caregiver knows that it is not. After a four-month stint in the hospital, my mother came home July 2017 with stage 4 colon cancer, a very difficult ostomy, and a wheelchair. She's also overweight. Since then, she has had a slew of chemo- and ostomy-related health issues. However, her cancer is supposedly stable and with continued treatment, she may live years yet. The trade off? It's my life, my husband's life, and my daughter's life for hers. We've tried to be altruistic. We've been cheery, supportive, and not complained beyond ourselves. I spent three months caring for her at her house without respite. I spent another three months spending entire days at her house and only sleeping nights at mine. Since then, I have visited multiple times a week to change her ostomy bag, help her bathe, go with her to chemo/doctors/ER/hospital.

Oh, how the doctors praise my mother. What a good daughter she has raised. She's narcissistic. She eats it up. She's so proud that she has someone who is sacrificing it all for her. But, I'm miserable. And, I'm ashamed. I may be a "wonderful" daughter, but I'm a horrible wife and parent. I abandoned my husband and daughter for months. My husband lost his good-paying job of fifteen years five months prior to my mom initially going into the hospital. The company he worked for decided it would be a lot more cost efficient to fire everyone in his peer group. Days before my mom's emergency surgery, he started a new job at less than half the pay, plus higher health insurance and prescription costs. It's a long commute. And, it's not enough to make ends meet. His confidence has taken a beating. He was/is depressed. Plus, he has his own serious health issues (nearly ten years ago, he was given a 5-10 life expectancy). I wasn't there for him. I didn't realize how difficult it was for him until a month ago when he finally confided in me. Through all of this, I've been dragging my ten-, then eleven-year-old daughter along, trying to school her. Plus, I HAVE to work now. I develop and sell digital products. If I can't continue to make up the slack, we'll sink.

I am on call 24-7. I can hardly leave town without meticulous planning. And, I certainly can't go on any sort of vacation with my family, which we desperately need. No one will learn to change her ostomy bag but me. She has multiple fistulas that have popped up over the past year. It's taken a lot of trial and error and outside-the-box thinking for me to find an ostomy method that stays on for more than a day or two without leaking. We are making it a week per bag now. It's not that difficult to change, but it's a process and can be stressful (particularly when she has diarrhea). No one else will learn to change it, so I'm trapped. By default, my family is trapped.

After months of drudgery, the cancer doctor took her off chemo to allow her body to recover a bit. Although primarily wheelchair bound, she became stronger and more independent. We've gotten a bit of life back, but we've lived in a state of constant stress and fear. My husband and I are sick with stress. I've physically collapsed in his arms. We've both had what I assume are panic attacks. We've had chest pain bad enough to wonder whether would make it to the next day.

Three weeks ago, my mom developed unexplained muscle weakness. She is currently bedfast. She probably won't get better. I can't lift her. Medicare kicks her out of rehab next week. Medicaid has rejected her twice because her disability check is too large (her only income). She doesn't want to go into a nursing home. Not that she can afford one. Neither can we. We can't go back into the volcano. How do we escape?

Full Disclosure:  My mom has a male companion who lives with her. He is about twenty years her senior. He's nearly deaf and has a bad back and knees. He mostly helps by driving her to appointments, shopping, taking care of her cats and dogs, and doing some laundry. Besides picking her up when she falls, he will do very little that is health- or care-related. My only sister refuses to help at all. Her husband says she's not a caregiver and that's that.

PS - Please don't quote this. I'll probably delete it in time. I just need to talk to people who understand that homeschooling and working from home are real jobs. We are real people with real lives. We are not expendable.

[LucyStoner]

Hugs.  It's rough being the only caregiver in a sibling group.  

If her only income is the disability payment (SSI or SSD or a private thing?), I am not sure why a Medicaid nursing home would turn her away?  Here the Medicaid nursing homes will take most of someone's disability check but they will take anyone who doesn't have assets or other means to pay.   Does your area have a senior services office? If so I would call and talk to a social worker.  Be frank that you can't continue to care for her and need to find resources to fill in the gaps.  

It is ok to have boundaries, even with aged and ill parents.  I have to maintain them with my dad.  I will not provide in-home care for him like I did for my mom.  He will have to rely on social services too.  

[Lang Syne Boardie]

I agree with the pp. You do not have to do this. You are allowed to stay alive, and you are allowed to prioritize and protect the normal life, happiness, and future chances of your marriage and children.

[pitterpatter]

2 minutes ago, Tibbie Dunbar said:

I agree with the pp. You do not have to do this. You are allowed to stay alive, and you are allowed to prioritize and protect the normal life, happiness, and future chances of your marriage and children.

You would think so. But, I'm just not convinced this is the case. I'm pretty sure life, liberty, and the pursuit of happiness is a complete farce.

I laid it all out for her case worker (and the financial aid liaison) at the hospital. We'll see what happens.

[Corraleno]

You are not obligated to sacrifice your own health and well-being for a narcissistic parent. You have the right to set boundaries. Tell her that you need to go back to work, you need to take care of your own family, and she needs to figure something else out. Then step back and do not let her guilt you into jumping back in the volcano. Move away if you have to — could your husband find a better job elsewhere?

[KungFuPanda]

I understand the constancy of full-time disabled caregiving. However, I’m caring for my son in my home with my husband. You HAVE to make a drastic change so these fleeting years with your husband and child aren’t full of misery. 

Inform your mother that you are going back to work on a specific date and will be available to her x times a month for a set amount of time. This is not your problem to solve. As long as you treat it as your problem to solve nobody else will step in. Your sister is smart and apparently able to set and maintain boundaries. I’m sure she’s happier for it. 

Tell her no. She will figure it out. It’s ok to draw the line at very nurse-specific jobs. She can hire an aid or her significant other can kick in OR she can learn to change it herself. 

[Mary in VA]

She needs more care than you can give. If she is in rehab now the facility she is in should have a social worker on staff that can help you navigate the options available given her financial situation.  Maybe there are programs/facilities that can help.  

((((HUGS)))) I can relate to being a caregiver.  My dh has ALS with FTD(frontal temporal dementia). He can't be left alone and needs 24/7 care. Thankfully I have help four days a week and my daughters are grown so I don't have the generational tug from both ends.  But I can totally understand the emotional toll it takes.

[LucyStoner]

Here's something else:  charity starts at home.  You, your spouse and your kids are your home.  You start there and work outwards as you can.  You do not have to give ANYTHING (time, money, mental energy) to ANYONE at the expense of you and your home.  Charity starts at home.  You aren't being selfish to take care of yourself and your kids and spouse first.  I say this as someone who has a long history of helping extended family and others when I really didn't have the bandwidth to do so.  A marriage counselor told me this years ago and it's been transformative for me and my family.  

 

[catz]

I know saying you don't need to care give for an aging parent can be fighting words in these parts, but it's 100% true.  You deserve happiness and to prioritize your own family and life first.  You know what they say about putting your oxygen mask on first.   Not everyone can bounce back from being such an intense caregiver.  Your husband deserves a wife too and your daughter deserves engaged and present parents.  I've always thought if our parents needed major help while our kids are still minors, our ability to help will be pretty minimal.  It's also a huge effort to be an emotional helper without the day to day physical care giving piece.

Laying it out for the social case worker is a good idea.  Since she is currently in rehab, tell them she can not be released to you and be very honest on what you are willing to commit to (and if it's nothing right now, fine).  Contacting elder services in your area is a good idea.  I have a friend whose mother was placed in a home through a charity organization.   I would follow every outlet.  If she is of right mind you can throw it back her court too.  Do you have siblings? I would give them a head up.  

Her feelings are not the only feelings that matter here.   The fact that you are the only one dealing with the ostomy on a regular basis is absolutely ridiculous.  You are right to put your foot down.  If you have the ability to talk to a therapist, that would be a good idea.  I think setting a drop dead date on your availability and sticking to a minimal schedule you're ok with is totally fine.  

I agree 110% with LucyStoner's last post.  I truly believe just because someone is ill doesn't mean they deserve more of you than the next person.  Any of us could get hit by a bus tomorrow.  Your family should be your priority.  

[pitterpatter]

1 minute ago, KungFuPanda said:

I understand the constancy of full-time disabled caregiving. However, I’m caring for my son in my home with my husband. You HAVE to make a drastic change so these fleeting years with your husband and child aren’t full of misery. 

Inform your mother that you are going back to work on a specific date and will be available to her x times a month for a set amount of time. This is not your problem to solve. As long as you treat it as your problem to solve nobody else will step in. Your sister is smart and apparently able to set and maintain boundaries. I’m sure she’s happier for it. 

Tell her no. She will figure it out. It’s ok to draw the line at very nurse-specific jobs. She can hire an aid or her significant other can kick in. 

 

Except, it kind of is my problem to solve. I'm first born. My father is dead. I'm her DPOA. I'm in charge of her healthcare and her finances. I'm her everything. And while she is narcissistic (she doesn't think so), I don't hate her. I can't say that I love her the same way I do my husband and daughter, but she's my mother...a human being that is suffering too. She's dying. She doesn't want to, but it's happening none the less.

And, you hit the nail right on the head in your first paragraph. I'm literally stealing my husband's life. And, my daughter's life with her father. He's a ticking time bomb. He's doing ok health-wise, but I see changes. We both do. It's part of what makes this situation so bitter. We have no crystal ball.

[Tanaqui]

Quote

Except, it kind of is my problem to solve. I'm first born. My father is dead. I'm her DPOA. I'm in charge of her healthcare and her finances. I'm her everything. And while she is narcissistic (she doesn't think so), I don't hate her. I can't say that I love her the same way I do my husband and daughter, but she's my mother...a human being that is suffering too. She's dying. She doesn't want to, but it's happening none the less.

 

Being first born does not make you more responsible for your mother than your siblings, and nothing you've said convinces me that your mother is not capable of solving this problem for herself. And if she IS incapable of solving this, and your sister is too, then there's still social services. Somebody has an answer that doesn't involve you working yourself to the bone. You don't need to solve this personally.

This is an awful situation all around, and if it keeps up you're going to have an absolute breakdown and collapse and be utterly unable to take care of even yourself, let alone your mother. You have to set a deadline to step back, and then do it. This is for HER good, because YOU cannot be her everything, and it is harming not just you, not just your child and husband, but HER to have you keep trying.

[brehon]

19 minutes ago, pitterpatter said:

 

Except, it kind of is my problem to solve. I'm first born. My father is dead. I'm her DPOA. I'm in charge of her healthcare and her finances. I'm her everything. And while she is narcissistic (she doesn't think so), I don't hate her. I can't say that I love her the same way I do my husband and daughter, but she's my mother...a human being that is suffering too. She's dying. She doesn't want to, but it's happening none the less.

And, you hit the nail right on the head in your first paragraph. I'm literally stealing my husband's life. And, my daughter's life with her father. He's a ticking time bomb. He's doing ok health-wise, but I see changes. We both do. It's part of what makes this situation so bitter. We have no crystal ball.

So, and please know I’m not intending to be an ass, what are your plans for your mom, husband, and daughter when you physically, mentally, and/or emotionally collapse and are unable to do anything at all? 

 

[LucyStoner]

Also,  sometimes when you step back, other people see you aren't playing around or making idle promises and they step up a bit more. 

My brother does more for my dad than he used to, because I do less than I used to.  I have been very explicit about what living with us will entail and that once hospice or nursing care is needed, he can't live with me.  With my mom, I did everything.  Well, me and my husband did everything.  I probably could have stepped back a bit.  My mother was also not toxic or narcissistic like my dad can be so carrying for her wasn't the burden that I think caring for my dad would be.  

Don't get me wrong, I am not saying I don't help my dad.  I just limit it because I can't deal with him for sustained periods of time.  

 

[pitterpatter]

3 minutes ago, brehon said:

So, and please know I’m not intending to be an ass, what are your plans for your mom, husband, and daughter when you physically, mentally, and/or emotionally collapse and are unable to do anything at all? 

 

 

No, of course not! I know these things. I'm trying to find people who have been in similar situations to tell me there's a way out and how to get there. I honestly feel like the hospital, the government will simply send her home even when I say there is no one to care for her. Then what? I can't just let the EMTs put her in bed, then me walk out the door. Who does that? Besides, in this social/political climate, I'd probably be put away for life if something happened to her.

[Katy]

Go to the hospital for the chest pain.  Get an evaluation.  Tell everyone involved you are physically incapable of caring for her any longer so she either needs to change the bags herself or she needs to go to a nursing home, whether she wants to or not.  Understand that assisted living and nursing home are not the same thing.  Call the social services worker in your area.  Visit, but do not be the caregiver any more.  Just do not. Your family comes first.

[Lang Syne Boardie]

Just now, pitterpatter said:

 

No, of course not! I know these things. I'm trying to find people who have been in similar situations to tell me there's a way out and how to get there. I honestly feel like the hospital, the government will simply send her home even when I say there is no one to care for her. Then what? I can't just let the EMTs put her in bed, then me walk out the door. Who does that? Besides, in this social/political climate, I'd probably be put away for life if something happened to her.

 

No, that's what we are saying. You can tell her doctor that you will not be her carer so if she can't take care of herself, they can't send her home alone. You have to actively refuse. 

[Katy]

Just now, pitterpatter said:

 

No, of course not! I know these things. I'm trying to find people who have been in similar situations to tell me there's a way out and how to get there. I honestly feel like the hospital, the government will simply send her home even when I say there is no one to care for her. Then what? I can't just let the EMTs put her in bed, then me walk out the door. Who does that? Besides, in this social/political climate, I'd probably be put away for life if something happened to her.

 

Okay, nursing background here.  If you refuse to care for and accept responsibility for her, the hospital social worker will figure out where to move her, which will likely be a nursing home. Or they will determine she is being narcissistic and is perfectly capable of learning to care for herself.

[Lang Syne Boardie]

If she gets put into a crappy nursing home, it will not be because you abandoned her. It will be because you had to make the responsible, moral, and ethical choice not to literally die, or to allow your husband to die from stress, or...

to not make the choice for your daughter to be the one to receive help from the state instead of your mother.

If I were there, I would have said that so gently, with my arm around your shoulder and my hand on the phone to start making calls. You'll have to hear the love and support intended by every one of us in this thread who has nearly died while caring for someone else.

 

[Tanaqui]

I know that this is what you're afraid of, but sometimes how we feel is not the way things are. If you go to the doctors and social workers and say "I am unable to continue providing this level of care, period, she cannot be returned to our home" then they will find a way. People do this ALL THE TIME. It doesn't make you a bad person - and if you're criminal, then so's your sister! But I see you're not worried that she's going to be imprisoned for shirking her filial duty, because legally (and, I'd say, ethically) she hasn't been. You don't have an obligation to destroy yourself.

Quote

I can't just let the EMTs put her in bed, then me walk out the door. Who does that?

 

Lots of people, specifically, people who don't want to die of stress. This apparently includes your mom's other child(ren). Very sensible. Not immoral. You cannot take care of her any longer. You must take care of yourself. That is where your responsibility lies.

[Katy]

2 minutes ago, Tanaqui said:

I know that this is what you're afraid of, but sometimes how we feel is not the way things are. If you go to the doctors and social workers and say "I am unable to continue providing this level of care, period, she cannot be returned to our home" then they will find a way. People do this ALL THE TIME. It doesn't make you a bad person - and if you're criminal, then so's your sister! But I see you're not worried that she's going to be imprisoned for shirking her filial duty, because legally (and, I'd say, ethically) she hasn't been. You don't have an obligation to destroy yourself.

 

I would take this a step further and say you have a moral obligation to not destroy yourself.  This is why social workers are part of every hospital floor, to figure out situations just like this.

[Lang Syne Boardie]

As far as what to tell the family, I would honestly take off the gloves now.

"You refused to help take care of your own mother. So I KNOW that I cannot count on you to take care of my child if I die for mom. So that's not going to happen. I have given everything I had to give. Now I WILL rest, and take care of my family. And this is not a debate. Call me if you need information directly pertaining to moms care, if you are going to take any part of that care under responsibility. Her doctor is Dr. Fields at university hospital, and her residence is now at Sunnyvale nursing home."

[forty-two]

5 minutes ago, pitterpatter said:

 

No, of course not! I know these things. I'm trying to find people who have been in similar situations to tell me there's a way out and how to get there. I honestly feel like the hospital, the government will simply send her home even when I say there is no one to care for her. Then what? I can't just let the EMTs put her in bed, then me walk out the door. Who does that? Besides, in this social/political climate, I'd probably be put away for life if something happened to her.

 

3 minutes ago, Katy said:

 

Okay, nursing background here.  If you refuse to care for and accept responsibility for her, the hospital social worker will figure out where to move her, which will likely be a nursing home. Or they will determine she is being narcissistic and is perfectly capable of learning to care for herself.

When it was time for my grandmother to be discharged from rehab, there was a mandatory evaluation of my grandfather's ability to care for her - if he could not have done what was required, they would not have released her.  I'd think, if you weren't in the picture, then they'd evaluate whether the man she is living with is willing/able to care for her.  ITU that everyone just expects you to be in the picture now, and that you don't see any clear way to disentangle yourself from everything.  I'd think that a frank conversation with the doctors and nurses telling them that you can no longer be her primary caretaker - that here's what you can do, and here's all the things you used to do that you no longer can do - would be a start.  Honestly, while she's in the hospital seems a good time to do this, because I really don't think they will send her home without checking to be sure there's someone to care for her.  You just have to somehow make it clear that you are no longer able to take that role - that she needs to find someone else.  Hopefully people here will have some good advice about how to go about doing that.

Praying for you, that you can find a good resolution here, for all involved.

[itsheresomewhere]

The biggest mistake that most care givers make is not admitting when it is too much. It is not a crime to anyone who has ever done care giving to a parent or relative to tell the case worker that she has no where to go.  You have to take care of you.  How much help will you be if you get so run down that you can’t take care of yourself? Don’t feel guilty at all.  Hugs to you

[Lang Syne Boardie]

Just now, forty-two said:

 

When it was time for my grandmother to be discharged from rehab, there was a mandatory evaluation of my grandfather's ability to care for her - if he could not have done what was required, they would not have released her.  I'd think, if you weren't in the picture, then they'd evaluate whether the man she is living with is willing/able to care for her.  ITU that everyone just expects you to be in the picture now, and that you don't see any clear way to disentangle yourself from everything.  I'd think that a frank conversation with the doctors and nurses telling them that you can no longer be her primary caretaker - that here's what you can do, and here's all the things you used to do that you no longer can do - would be a start.  Honestly, while she's in the hospital seems a good time to do this, because I really don't think they will send her home without checking to be sure there's someone to care for her.  You just have to somehow make it clear that you are no longer able to take that role - that she needs to find someone else.  Hopefully people here will have some good advice about how to go about doing that.

Praying for you, that you can find a good resolution here, for all involved.

 

Yes. The conversation is with the medical staff, not with the family. For all practical purposes they don't exist, and they get zero voice in the decision of whether you have to do anything in the world. Inform them later if they even ask. You are not anyone's slave. You are a person. 

[Kim in Appalachia]

1 hour ago, pitterpatter said:

You would think so. But, I'm just not convinced this is the case. I'm pretty sure life, liberty, and the pursuit of happiness is a complete farce.

I laid it all out for her case worker (and the financial aid liaison) at the hospital. We'll see what happens.

 

I hope they find an answer.  If not, keep pressing them for an alternative.  Find something.  You can not do this.  There has to be something somewhere.  Tell them you will no longer care for her.  Seriously.  Tell her there is no care and she can not do it herself.  The state will need to take over. 

((((((((Hugs)))))))))  

[chiguirre]

With the new muscle weakness and her being confined to a bed, I don't see any way to avoid either a nursing home or in-home nursing care everyday. You will absolutely not be able to care for a bedridden patient. Even if you wanted to, the logistics just wouldn't work and you would be risking serious injury yourself if you lift her incorrectly. You don't need to feel any guilt at all. Circumstances changed and this is just beyond what a regular person can do on their own.

You're an excellent daughter, OP! But you're not superwoman.

[brehon]

30 minutes ago, pitterpatter said:

 

No, of course not! I know these things. I'm trying to find people who have been in similar situations to tell me there's a way out and how to get there. I honestly feel like the hospital, the government will simply send her home even when I say there is no one to care for her. Then what? I can't just let the EMTs put her in bed, then me walk out the door. Who does that? Besides, in this social/political climate, I'd probably be put away for life if something happened to her.

Well, actually you *could* just walk out the door. It is a choice. Your mom sounds capable enough to arrange care for herself. Whether she wants to or not is quite frankly irrelevant. 

Deal with this now by being upfront and firm about what you will and won’t do — with the medical staff, not your mom or sister, though those conversations will also happen at some point. And don’t demur and say “well, maybe, if I...” because what comes after the ellipsis will wreck your home, family, and self.

You sound like your have tied the proverbial knot at the end of your rope and the knot is fraying. Remember, you have choices here. 

[Katy]

11 minutes ago, chiguirre said:

With the new muscle weakness and her being confined to a bed, I don't see any way to avoid either a nursing home or in-home nursing care everyday. You will absolutely not be able to care for a bedridden patient. Even if you wanted to, the logistics just wouldn't work and you would be risking serious injury yourself if you lift her incorrectly. You don't need to feel any guilt at all. Circumstances changed and this is just beyond what a regular person can do on their own.

You're an excellent daughter, OP! But you're not superwoman.

 

Even if you had a nursing background, perfect health, and no one else to care for, this is an untenable amount for anyone to take on.  Just don't do it.  Which isn't to say don't visit.  Visit three times a day if you want, but don't care give.  You're not capable, and that is perfectly morally acceptable.

[Tanaqui]

2 minutes ago, Katy said:

 

Even if you had a nursing background, perfect health, and no one else to care for, this is an untenable amount for anyone to take on.  Just don't do it.  Which isn't to say don't visit.  Visit three times a day if you want, but don't care give.  You're not capable, and that is perfectly morally acceptable.

 

Indeed. Real nurses get paid, and they have set hours, and they get breaks and vacations. And nobody expects them to LOVE their patients, either, just tend to their physical needs.

[prairiewindmomma]

Tell the social worker that you cannot care give, and she will be evaluated for nursing home care or home health care.

It’s ok to be “just a daughter” and not her nurse. And, sometimes the most loving thing you can do is set healthy boundaries.

[Storygirl]

I'm so sorry. I agree with the others that you need to speak up and refuse, as hard as it is to do so.

As for not qualifying for a nursing home financially -- that depends on many factors. My mom is in a nursing home, and my dad still works (at age 83), so he has an income, but her care is now covered in total by Medicaid and her retirement check (she worked for the public schools). The government considers his income is meant to provide for his needs.

There was a period of time when she was full pay. Dad had to deplete her savings account, because as long as she had savings in her name, it had to be used for her care. But once she had nothing, Medicaid kicked in. It was a frustrating process for Dad with a lot of red tape, and it took something like eight months before she received Medicaid.

My parents also are renters who do not own their own home. If she is a home owner, that will affect things, of course. Every case is individualized.

I think if she is bedridden, the hospital cannot send her home without a care plan in place, so now is the time to let them know what you can and cannot do.

I'm sorry. I know it's hard.

[KungFuPanda]

2 hours ago, pitterpatter said:

 

Except, it kind of is my problem to solve. I'm first born. My father is dead. I'm her DPOA. I'm in charge of her healthcare and her finances. I'm her everything. And while she is narcissistic (she doesn't think so), I don't hate her. I can't say that I love her the same way I do my husband and daughter, but she's my mother...a human being that is suffering too. She's dying. She doesn't want to, but it's happening none the less.

And, you hit the nail right on the head in your first paragraph. I'm literally stealing my husband's life. And, my daughter's life with her father. He's a ticking time bomb. He's doing ok health-wise, but I see changes. We both do. It's part of what makes this situation so bitter. We have no crystal ball.

Being first born has nothing to do with it. She HAS a significant other. You are wearing too many hats. It sounds like you are already your mother’s personal assistant AND devoted daughter. Being a private nurse on top of that is not sustainable. THIS is your moment to step back. If you can’t say no to the hospital staff, then do not be the person who retrieves her from the hospital. Do not take on that responsibility. If you dropped dead tomorrow, alternative arrangements would be made. Let them be made now. 

[TechWife]

I'll add my voice to the chorus - don't do it. Your health and your husband's health is at risk. You have done the right thing by laying out the situation for the staff at the rehab facility, but I am not sure that you were clear with them that you cannot continue to take care of her (explaining your complications isn't the same thing, they could decide you are just letting off steam). Don't worry about her financial situation. Qualifying for Medicaid when in a nursing home is different than qualifying for Medicaid outside of a nursing home. Her assets can be used to pay for her care - a nursing home will take her SS check as payment, then she gets Medicaid. If she has assets that prevent her from qualifying for Medicaid (such as a house), then the nursing home will know what kind of paperwork you need to do to sign them over to the state. Any cash she has on hand can be used to pay for her care - that's what money is for, to pay for needs. This is known as a "spend-down." The person has to "spend-down" their assets on qualifying care or medically necessary items in order to qualify for Medicaid. The nursing home social worker, if not the hospital social worker, will be able to tell you what a qualifying expense is how to do this. You will not be on the hook for paying for her care unless you are legally her guardian.

Even though you are the first born and you have POA, that doesn't mean you are responsible for physically caring for her - neither one of those conveys that responsibility. The POA just means you can represent her.

The rehab will not discharge her to an  unsafe situation, that is elder abuse and they will not do that.  If they determine she can take care of herself or that her significant other can take care of her, they will discharge her to home. If they determine she needs more care, then they will find a nursing home bed (if she is bedridden, then assisted living is not an option).  Take yourself out of the daily care equation. You and the rest of the family will be better for it.

[TechWife]

21 minutes ago, Patty Joanna said:

 

And speak up NOW because once she is released out of the hospital, you lose a whole bunch of supporting staff and processes.  I'm right there with you.  

 

This - 1000 x this.

[Soror]

So many hugs for you! You are a good daughter. You are a good daughter even if you no do not care for your mother at all ever again. Please, take care of yourself. 

[Pen]

Haven’t read the whole thread, but IMO, she needs to be in a nursing home even if she doesn’t want to be. And you need help from someone who can help get her into one, such as a social worker for senior services. Transfer should go straight from facility where she now is to the nursing home   Often people can be kept in a hospital longer whilst waiting to get transferred  

There are also things called , IIRC , Section 12 government entities related to elder care issues. 

There should be a nursing home that will take whatever income she has and put it toward her nursing home expenses less a statutory amount that she gets to keep depending on state.  Assuming you are in USA somewhere. Like $35 or so for personal needs. She may have to “spend down” any assets. There are rules regarding a home if any and what can be kept. 

[Pen]

32 minutes ago, Seasider too said:

 

All of this. Make sure they know she has no support upon release. Sadly, when family is responsive in crisis medical situations, the assumption made by the medical team is that such care is ongoing at home. Make it clear that is not the case going forward - no matter what your mother says. 

 

 

Yes this is important. 

[Pen]

dp

[Pen]

Also , so far as I know, you can formally withdraw from being Power of Attorney or other such roles you may have agreed to but cannot fulfill without harm to your self and nuclear family. 

Look on LegalZoom or something like that to find out exactly what you have to do to legally resign from POA.

 

Be careful not to take on any personal financial responsibility for her care or expenses beyond what her own income will cover   Some places try to get relatives to sign as financially responsible. Or responsible for fees that insurance or Medicaid doesn’t cover. Etc. 

[Melissa in Australia]

HUGE HUGS

I use to work as a aged care respite worker. I saw first hand what it does to the caring son or daughter

 

HUGE HUGS

 

 

[Ausmumof3]

4 hours ago, pitterpatter said:

 

No, of course not! I know these things. I'm trying to find people who have been in similar situations to tell me there's a way out and how to get there. I honestly feel like the hospital, the government will simply send her home even when I say there is no one to care for her. Then what? I can't just let the EMTs put her in bed, then me walk out the door. Who does that? Besides, in this social/political climate, I'd probably be put away for life if something happened to her.

I'm in Australia so it's probably different but here what you basically need to do is get them made a ward of the state.  It means the state takes all inheritance money if there is any but are 100pc responsible for the medical care and living arrangements.  That said the case I know of where this happened was a dementia one so I don't know if it works for mental illness.

[Pen]

Scratch “section 12”

 

correct term is “Agency on Aging” and you can google it for which covers your area and how to reach them — again this only applies in USA. 

[pitterpatter]

Thank you, everyone. I am encouraged by your support and words of wisdom. I will hunker down and prepare for war. I know it's not going to be pretty. But, I have to become an advocate for my family. If not me, then whom? Certainly, no one else wants to risk being thrown into the volcano with us.

[Carrie12345]

35 minutes ago, pitterpatter said:

Thank you, everyone. I am encouraged by your support and words of wisdom. I will hunker down and prepare for war. I know it's not going to be pretty. But, I have to become an advocate for my family. If not me, then whom? Certainly, no one else wants to risk being thrown into the volcano with us.

Sending lots of strength!

We have just gone through this, except the patient is the spouse of the narcissist.  Dh has had lots of contact with the social workers, and they have made arrangements that we do not need to be involved in.  Of course the narcissist has decided we're evil. But her mental illness cannot change objective reality.

[Pen]

11 hours ago, Pen said:

Scratch “section 12”

 

correct term is “Agency on Aging” and you can google it for which covers your area and how to reach them — again this only applies in USA. 

 

Adding :

If you contact a group like this for you area, do it for *yourself* and your family to help you with understanding the situation you are in.  

Perhaps to find an attorney who specializes in elder law —for you, not for your mother — to help make sure that you are properly out of the POA, if you do not feel capable of writing and sending a legal letter of resignation on your own. And perhaps to help advise you to keep you out of any problems where someone could claim you did not do something or did do something which action or inaction caused your mother to be harmed as a result. For example to write a letter to the hospital/rehab that goes along with your letter of resignation from POA, and clearly states that you are unable to care for your mother and believe that she needs to be in a nursing home for her safety.

 

 If I were you, I would stay away from her and the hospital/rehab. If her partner she lives with chooses to pick her up and take her home that would be up to him. You won’t be there. And if you resign from the POA right away you will not have any more authority to be involved in what decisions they make  And also not responsibility to be involved    

 

[Pen]

33 minutes ago, Seasider too said:

 

Honestly, your POA doesn't come into play until she's actually unable to make decisions on her own behalf. If you haven't used the force of it yet, and don't want to, now is the time to vacate it. 

Wow, my blood pressure is shooting up just reading this thread. Caregiver PTS is real. 

 

I think whether or not you have used the force of it, now is the time to resign from it. 

I was asked to take on POA for a relative who might be a little like @pitterpatter‘s mother. After looking into it, I determined that I absolutely cannot take that on. 

He is currently in a nursing home. He went there from an acute care hospital with social workers at the hospital arranging for it. He had to stay in the hospital past when he could otherwise have been discharged because they had not yet completed arrangements for the nursing home for him. 

[Soror]

I did my practicum at Senior Services years ago and part of that was going into homes to evaluate if care was needed. I never evaluated anyone who needed that level of care, from what you are describing it sounds like she really needs 24/7 nursing care. No one person can do that, not even for the short term and you are already so far burned out. She needs more than you can reasonably provide by any standard. Prayers for you navigating this process and strength to do what you need to do.

[PrincessMommy]

19 hours ago, Mary in VA said:

She needs more care than you can give. If she is in rehab now the facility she is in should have a social worker on staff that can help you navigate the options available given her financial situation.  Maybe there are programs/facilities that can help.  

((((HUGS)))) I can relate to being a caregiver.  My dh has ALS with FTD(frontal temporal dementia). He can't be left alone and needs 24/7 care. Thankfully I have help four days a week and my daughters are grown so I don't have the generational tug from both ends.  But I can totally understand the emotional toll it takes.

This.

It doesn't matter that you are more available than your sister.. The fact is your mom's needs are beyond your abilities.  Don't be afraid to stand up for yourself... talk with social services and don't be guilted into being the "devoted daughter".  

[pitterpatter]

Unfortunately, my sister is the second on the DPOA. I have concerns about her mental well being. We had a significant disagreement before my mother came home last year. She and her husband were a bit too caught up in "preserving the assets" of my mom's estate (a house and a car) over ensuring she has the care she needs. I wouldn't be surprised if they did something that would negate my mom's eligibility to receive state assistance. She also told my mom that she should come home on hospice (this was last year before she came home the first time). That didn't set well with my mother, as you can imagine.

2 hours ago, Seasider too said:

 

Honestly, your POA doesn't come into play until she's actually unable to make decisions on her own behalf. If you haven't used the force of it yet, and don't want to, now is the time to vacate it. 

Wow, my blood pressure is shooting up just reading this thread. Caregiver PTS is real. 

 

[Corraleno]

26 minutes ago, pitterpatter said:

Unfortunately, my sister is the second on the DPOA. I have concerns about her mental well being. We had a significant disagreement before my mother came home last year. She and her husband were a bit too caught up in "preserving the assets" of my mom's estate (a house and a car) over ensuring she has the care she needs. I wouldn't be surprised if they did something that would negate my mom's eligibility to receive state assistance. She also told my mom that she should come home on hospice (this was last year before she came home the first time). That didn't set well with my mother, as you can imagine.

 

 

I would not give up the DPOA; just remember that a DPOA is not an obligation to personally care for her or to pay for her needs yourself. I would stop providing any nursing care yourself, and also not get sucked in to paying any of her personal expenses, but retaining the right to ensure that she is well-looked after and is getting the care she needs will help you (and your mom) feel less like you've "abandoned" her. (Not that you should feel like you abandoned her even if you did quit the DPOA, but I think you would probably feel that way given the level of guilt you've expressed over not doing 100% of her care.)

I have General Power of Attorney for both my MIL and her mildly developmentally disabled brother, and I have managed all their legal and financial affairs for nearly 20 years, despite the fact that her son and I are now divorced. (The issue you mention with your sister is precisely why I was asked to remain as POA even after the divorce — they knew his first priority would be "protecting his inheritance," and that my priority would always be making sure they were well taken care of.) I also had Healthcare POA for MIL's brother and managed all of his assisted living issues, daily expenses, medical care, etc. for about 15 years up until his death two months ago, including getting him on hospice at the end. I never did any direct medical care; as POA/HPOA my job was to make sure he was well cared for by professionals, not to do the work myself.

Being your mom's advocate is a huge job in itself and is the most effective use your time, skills, and resources in terms of helping her. Let professionals handle all the rest. Sending hugs and strength for you to make the changes you need to make, for the sake of everyone's physical, mental, and emotional health, including your mother's.  (((hugs)))