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


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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    

 

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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. I

OK, reframing this: THINGS HAVE CHANGED. That's what you keep saying to everyone and also to yourself.  THINGS HAVE CHANGED. Sounds like she needs two person assistance to move from a b

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 childr

18 minutes ago, Pen said:

 

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    

 

 

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. 

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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. 

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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.

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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".  

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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. 

 

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17 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.

 

 

Ok, then, I understand why you may want to remain POA. Again, that in itself is a full time job. Do what you must to have hands-on care provided by professionals. 

You are the Good Samaritan. You stepped in at the time of initial crisis, and now you are making arrangements as necessary for future care needs to be met, while you go about the activities of your own life. It's okay to do that. 

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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)))

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OK, reframing this:

THINGS HAVE CHANGED.

That's what you keep saying to everyone and also to yourself.  THINGS HAVE CHANGED.

Sounds like she needs two person assistance to move from a bed to a chair, now.  THINGS HAVE CHANGED.  You are not two people.  There is no other person to be the second one.  THINGS HAVE CHANGED.

Your family has run out of financial margin and you need to make money to get by now, which was not true before.  THINGS HAVE CHANGED.

Your husband is in poor health now and needs you to be home more than when this blew up the last time.  THINGS HAVE CHANGED.

Your daughter is falling behind emotionally and academically because of your instability, and is old enough that this is very risky.  THINGS HAVE CHANGED.

Your mom's disability might no longer disqualify her for Medicaid due to the inflation adjustments in those levels.  THINGS MAY HAVE CHANGED.

This is what you keep in mind when you feel guilty or when others say, well, you did this before.  THINGS HAVE CHANGED.  I can't hold her up by myself anymore.  I can't be off of work anymore.  I can't be gone from my home all the time anymore.  Things have changed.  

Also, it's crucial to get that well-established with the medical folks now, before she goes home.  They are only responsible until she is released with a good plan of care.  If you can't be the good plan of care anymore, they need to come up with another one or she can't be released.  

This all doesn't mean that you don't go over ever or that you don't help ever.  It means that you are no longer the primary caregiver.  Also, if the sibs are not going to pitch in physically, maybe they will pitch in financially.  That is what we do, with MIL being so far away--we do go back there and provide stints of respite care, but also we totally love on her caregivers, we help remotely with arrangements and strategies, and we pay for someone to come and mow her lawns plus put a monthly amount directly into her checking account to make her funds last longer.  No one asked us to do this, but we did recognize that things were fairly unequal, and gradually have helped toward squaring up a bit.  Asking your sib if there is something else they can pitch in with even if they are not going to do hands on work is valid and might be effective if done gently.

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18 minutes ago, Corraleno said:

... just remember that a DPOA is not an obligation to personally care for her or to pay for her needs yourself...


I just want to add that in spite of being in the midst of a stressful situation, you still need to be vigilant -- hospitals, other care providers, and mortuaries sometimes try and get you to sign paperwork when you are in the midst of a difficult situation and are mentally and emotionally distracted, stating that you will be financially responsible, when ALL you are is the DPOA or Medical POA.

We had this happen when we were walking our good friend (like a brother) through end of life several years ago. He very unexpectedly passed away and the hospital, after administering resuscitation efforts, pronounced death. While we were waiting for them to finish caring for the body so we could make our final goodbyes, a hospital worker came in with mortuary info (helpful), dealing with grief info (helpful), and paperwork for us to sign (NOT helpful). In the midst of our shock at the sudden turn of events, my husband was reaching for the pen when a little alarm bell went off in my head and managed to penetrate the mental fog of shock that I was in. I asked for clarification of what exactly the paperwork was for. It would have been signing that we were financially responsible for our friend's medical treatment at the hospital. We reiterated that we were only the Medical POA, and had no financial responsibility, and therefore could not (and would not) sign. The lady quietly took the paper back unsigned and that was that.

(((hugs))) and blessings as you CHOOSE to take steps AWAY from the volcano, and to PROTECT yourself and your family from being victims or from being sacrificed. Warmest regards, Lori D.

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3 minutes ago, Lori D. said:


I just want to add that in spite of being in the midst of a stressful situation, you still need to be vigilant -- hospitals, other care providers, and mortuaries sometimes try and get you to sign paperwork when you are in the midst of a difficult situation and are mentally and emotionally distracted, stating that you will be financially responsible, when ALL you are is the DPOA or Medical POA.

We had this happen when we were walking our good friend (like a brother) through end of life several years ago. He very unexpectedly passed away and the hospital, after administering resuscitation efforts, pronounced death. While we were waiting for them to finish caring for the body so we could make our final goodbyes, a hospital worker came in with mortuary info (helpful), dealing with grief info (helpful), and paperwork for us to sign (NOT helpful). In the midst of our shock at the sudden turn of events, my husband was reaching for the pen when a little alarm bell went off in my head and managed to penetrate the mental fog of shock that I was in. I asked for clarification of what exactly the paperwork was for. It would have been signing that we were financially responsible for our friend's medical treatment at the hospital. We reiterated that we were only the Medical POA, and had no financial responsibility, and therefore could not (and would not) sign. The lady quietly took the paper back unsigned and that was that.

(((hugs))) and blessings as you CHOOSE to take steps AWAY from the volcano, and to PROTECT yourself and your family from being victims or from being sacrificed. Warmest regards, Lori D.

 

WOW. That's a very important warning. I'm going to file that one away. Thanks for posting it.

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10 minutes ago, sassenach said:

If your mom is still mentally capable, I might encourage her to revoke your sister's DPOA. 

I think the sister is the successor POA if the OP resigns, so she would not have any powers as long as OP retains POA. Her mom could appoint a different successor, but if they are the only two children, then there may not be another good option. And I can say from experience that trying to remove someone from a trust, POA, or will, when they believe they have an inherent "right" to make decisions and control assets, can start WWIII at a time when everyone is stressed out and really needs to pull together. The last thing any parent needs or wants is to spend their last months on earth watching their kids fight each other for money and control. It's ugly, painful, and the damage can never be undone.

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33 minutes ago, Corraleno said:

I think the sister is the successor POA if the OP resigns, so she would not have any powers as long as OP retains POA. Her mom could appoint a different successor, but if they are the only two children, then there may not be another good option. And I can say from experience that trying to remove someone from a trust, POA, or will, when they believe they have an inherent "right" to make decisions and control assets, can start WWIII at a time when everyone is stressed out and really needs to pull together. The last thing any parent needs or wants is to spend their last months on earth watching their kids fight each other for money and control. It's ugly, painful, and the damage can never be undone.

 

While WWIII might begin, IF sister is more concerned with preserving a tiny estate than what is best for her mother she's already showing signs of committing financial abuse. I put a big emphasis on the IF because we don't know what had happened that made sister think mom would even be accepted into hospice.

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WWIII is still not the end of the world. Seriously.  (I am saying this with a big BTDT catalog of experiences behind me.)  People will be upset. So what.  They are upset that you aren't caving to their will.  That's ok.  Think of it as a big toddler tantrum and let it all roll off of you.  Seriously.  Let the yelling and screaming commence and either turn and walk away or stare at them like they've lost their freaking mind and when they exhaust themselves, carry on.  The yelling and screaming either is them being unable to manage their emotions or them attempting to manipulate you.  Either way, when you get to the point of where you don't take that personally, it becomes a lot easier to cope with.

Katy--her mom has a stage IV cancer diagnosis. I think that's the reference to hospice. In some ways it's nicer than a nursing home placement because you can get in house services.  It sounds like her mom's needs have moved beyond that though. Things have changed.

Wishing you strength, courage, and clarity of mind, OP.  As I mentioned above, allowing our family to abuse us is not demonstrating love to them.  Sometimes the most loving thing we can do is move the relationship towards a healthy one or step out entirely. 

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3 hours 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 can understand this, but question whether you can do it and keep out of the fiery pit. 

Even just the fiery pit of the DPOA job itself  I think you need to put your current nuclear family’s well being first  

Preserving a house and a car can often be done legally and still be able to qualify for assistance. 

Or, if they did something that gets in the way it may be able to be undone. 

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1 hour ago, Katy said:

 

While WWIII might begin, IF sister is more concerned with preserving a tiny estate than what is best for her mother she's already showing signs of committing financial abuse. I put a big emphasis on the IF because we don't know what had happened that made sister think mom would even be accepted into hospice.

 

Does your sis have access to your mom's finances? You might want to quietly start collecting things that might cause trouble in the wrong hands. Deeds, titles, checkbooks, etc. Important papers related to any insurance assets and funeral/burial trusts. 

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2 hours ago, Corraleno said:

 

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)))

 

I just want to say that having a POA for someone with developmental disability or just older / I’ll health  is different than having it for someone who is narcissistic. 

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1 hour ago, Katy said:

 

While WWIII might begin, IF sister is more concerned with preserving a tiny estate than what is best for her mother she's already showing signs of committing financial abuse. I put a big emphasis on the IF because we don't know what had happened that made sister think mom would even be accepted into hospice.

 

1 hour ago, prairiewindmomma said:

WWIII is still not the end of the world. Seriously.  (I am saying this with a big BTDT catalog of experiences behind me.)  People will be upset. So what.  They are upset that you aren't caving to their will.  That's ok.  Think of it as a big toddler tantrum and let it all roll off of you.  Seriously.  Let the yelling and screaming commence and either turn and walk away or stare at them like they've lost their freaking mind and when they exhaust themselves, carry on.  The yelling and screaming either is them being unable to manage their emotions or them attempting to manipulate you.  Either way, when you get to the point of where you don't take that personally, it becomes a lot easier to cope with.

Katy--her mom has a stage IV cancer diagnosis. I think that's the reference to hospice. In some ways it's nicer than a nursing home placement because you can get in house services.  It sounds like her mom's needs have moved beyond that though. Things have changed.

Wishing you strength, courage, and clarity of mind, OP.  As I mentioned above, allowing our family to abuse us is not demonstrating love to them.  Sometimes the most loving thing we can do is move the relationship towards a healthy one or step out entirely. 

The sister has no legal power as long as OP has the DPOA. OP as three choices: (1) retain DPOA and do her best to advocate for her mom while backing away from all hands-on medical care; (2) resign as POA and let her sister take over, knowing that will likely mean that her mother is not well cared for; or (3) tell her mother that she plans to resign as POA but doesn't want the sister to do it either and try to twist mom's arm into drafting an entirely new DPOA appointing someone else.

IMO there's no reason to give up on Option 1 right now. If somewhere down the line the OP decides she does not even want to be the advocate, then she can choose between Options 2 & 3, knowing that those options are likely to cause a great deal of stress to herself, her mother, and many of those who will be handling the mother's end of life care.

 

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On 7/23/2018 at 2:06 PM, 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.

 

IMO you have to actively refuse. And because you have helped in past and others may assume you would be continuing to help, I think you need to put your refusal in writing so as to protect your self legally. 

And you also need to not sign anything that could make yourself legally liable for her care, as I tried to indicate in a past thread and as Lori explained above  

also

you need to not be present at all if and when EMTs put her in her bed. Don’t walk in the door in the first place.

If you suspect that happened, call 911 if you think it is an immediate emergency and have them — whoever 911 contacts— go. Or if not a 911 matter in your opinion, call the police or social services (different areas have different entities who do this) and ask them to do a “welfare check” on your mother. 

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On 7/23/2018 at 1:43 PM, 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.

 

If your mother is imminently dying she could go into a hospice. If she is dying somewhat longer term and cannot care for herself she can go into a nursing home   If she does not want to go into a nursing home and still feels able to make her own decisions she can figure out who can care for her so long as it is not you. 

 

Put youself, your husband, your daughter first. And feel good about putting the 3 of you first it is the right thing to do. 

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Does the doctor say that she has six months or less to live?  At least here, that is what is necessary to enter hospice.  And here, hospice doesn't necessarily mean a place - you can have hospice come to your house or to a nursing home - depending on level of care needed.  The hospice nurses will be providing palliative (comfort) care so that pain is minimized. 

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Stay strong and remember that your first obligation is to your husband, daughter, and yourself. The rest of your family gets in line only if you have something left to give. Your husband and daughter need you more than your mother needs you. It doesn't matter if she doesn't like her options, that's not your problem, it's her problem. Your problem is taking care of yourself, your husband, and your daughter. That core group of three is your number one priority.

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just another thought - is there any such thing as a carers pension in the us?  That might help with the financial situation if you have access to it.

 

Sort of, but it's not much money. (And for some really messed up reason, spouses aren't eligible. Not that that matters in this situation, I'm just saying.)

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2 hours ago, Jean in Newcastle said:

Does the doctor say that she has six months or less to live?  At least here, that is what is necessary to enter hospice.  And here, hospice doesn't necessarily mean a place - you can have hospice come to your house or to a nursing home - depending on level of care needed.  The hospice nurses will be providing palliative (comfort) care so that pain is minimized. 

 

In original post it was said that the mother seems to be stable despite cancer stage and could live for years. 

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13 hours 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.

 

 

And if not now, when?

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I didn't read every post, so I apologize if some one has mention this next bit already.

consult and elder care lawyer about a trust. I don't remember the correct name, but it is sort of like a special needs trust. My DH did this for his mother several years ago because her monthly SS and VA benefits were too high for Medicaid. How it worked was - a dedicated bank account was opened. All her monthly payments went into the account. All her expenses got paid each month. When she died- once all outstanding debts were settled- any remaining money had to be given to a specific government agency. In reality, once funeral expenses were paid there was $0 left so nothing was paid to the government. I really wish I could remember more details, but it was the only way the family could afford to keep MIL in her facility once her savings ran out. It 

i forgot the important part. With the trust in place she could get Medicaid to pay for the nursing home, and her SS could go to her other expenses. 

 

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You need to meet with the facility social worker and make it very clear to them that you are no longer available to provide care for her.  If there is t a family member available to do the home care, and she isn’t able to do it herself, they won’t release her.  If they do release her they willworkto set up Home health visits for the services she needs.

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On 7/23/2018 at 8:56 PM, 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 US

 Check with senior options in the area.  When my fil lived with me, he qualified for someone to come in and shower him. Mil had a nurse come in to check on her (diabetic with both legs gone).   Depending on her income, there should be some services out there that are available to her.  Check with social services at the hospital, or check into the nursing homes.  They should know what would be available and if she could get in.  Some are private, but others are under the county here.

 

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1 hour ago, Tina said:

 

 

I was suggesting that in this case pitterpatter check with them for help *for herself* because she is burned out and her family needs her.  all that trying to set up this or that nurse or service for her mother is itself a tremendous amount of strain and hard work. And I recommend that she be protecting herself by making it clear to hospital/ rehab etc. that she is no longer available to help. Not to do the nursing. Not to arrange the nursing. Not available. 

Not available 

Not available 

Not available 

Not available 

 

But she may need/want a lawyer to help self protect from narcissistic relatives. 

Edited by Pen
To emphasize not available
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1 hour ago, City Mouse said:

I didn't read every post, so I apologize if some one has mention this next bit already.

consult and elder care lawyer about a trust. I don't remember the correct name, but it is sort of like a special needs trust. My DH did this for his mother several years ago because her monthly SS and VA benefits were too high for Medicaid. How it worked was - a dedicated bank account was opened. All her monthly payments went into the account. All her expenses got paid each month. When she died- once all outstanding debts were settled- any remaining money had to be given to a specific government agency. In reality, once funeral expenses were paid there was $0 left so nothing was paid to the government. I really wish I could remember more details, but it was the only way the family could afford to keep MIL in her facility once her savings ran out. It 

i forgot the important part. With the trust in place she could get Medicaid to pay for the nursing home, and her SS could go to her other expenses. 

 

You have to be very careful with this. There is a five year look back period, which is the amount of time the state will go back and look for assets. Any property transfers or money transfers into a trust or sold within  that five year period would be counted in her spend down amount to qualify her for Medicaid. At this point, with skilled care needed, her assets should be used to pay for her current care, not placed in a trust for future use. Yes, this means any savings or retirement benefits go to pay the  nursing home until they are gone. Any property of value is sold and the money is used to pay for her care until it is gone. In some states you don’t have to sell the primary residence if there is another family member living in it, but the state would put a lien on it so that when it is sold the funds go to the state to reimburse for care.  If anyone is interested in forming a trust to protect assets, then consult an attorney for the laws in the state in which the person resides. 

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On ‎7‎/‎24‎/‎2018 at 8:20 PM, Carol in Cal. said:

OK, reframing this:

THINGS HAVE CHANGED.

That's what you keep saying to everyone and also to yourself.  THINGS HAVE CHANGED.

Sounds like she needs two person assistance to move from a bed to a chair, now.  THINGS HAVE CHANGED.  You are not two people.  There is no other person to be the second one.  THINGS HAVE CHANGED.

Your family has run out of financial margin and you need to make money to get by now, which was not true before.  THINGS HAVE CHANGED.

Your husband is in poor health now and needs you to be home more than when this blew up the last time.  THINGS HAVE CHANGED.

Your daughter is falling behind emotionally and academically because of your instability, and is old enough that this is very risky.  THINGS HAVE CHANGED.

Your mom's disability might no longer disqualify her for Medicaid due to the inflation adjustments in those levels.  THINGS MAY HAVE CHANGED.

This is what you keep in mind when you feel guilty or when others say, well, you did this before.  THINGS HAVE CHANGED.  I can't hold her up by myself anymore.  I can't be off of work anymore.  I can't be gone from my home all the time anymore.  Things have changed.  

Also, it's crucial to get that well-established with the medical folks now, before she goes home.  They are only responsible until she is released with a good plan of care.  If you can't be the good plan of care anymore, they need to come up with another one or she can't be released.  

This all doesn't mean that you don't go over ever or that you don't help ever.  It means that you are no longer the primary caregiver.  Also, if the sibs are not going to pitch in physically, maybe they will pitch in financially.  That is what we do, with MIL being so far away--we do go back there and provide stints of respite care, but also we totally love on her caregivers, we help remotely with arrangements and strategies, and we pay for someone to come and mow her lawns plus put a monthly amount directly into her checking account to make her funds last longer.  No one asked us to do this, but we did recognize that things were fairly unequal, and gradually have helped toward squaring up a bit.  Asking your sib if there is something else they can pitch in with even if they are not going to do hands on work is valid and might be effective if done gently.

 

This is such a helpful way of stating the situation.

The message is, "Things have changed, and I no longer have the capacity to hands-on care for my mother". 

You did your bit when you could, you can no longer do that. 

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My mother had likely borderline personality disorder. I am attending her memorial service next week. She maintained a state of helplessness for as long as I can remember, from at least her 30s. It is, frankly, a relief that she is gone and has finally found peace. I know her mind tormented her endlessly.

I have no idea if your mother has narcissistic or borderline personality disorder, but, I will say this: with NPD and BPD in play, there is no end to the caregiving required. There will never be anything you do that will be enough. The cancer could entirely resolve, and there will be new self-inflicted dramas. It is the nature of the illness, and the cruelest part of it for both the afflicted person and the family.

It is also exceptionally common for the oldest child to be parentified, meaning that the child is put in a role early on of being the caregiver for the parent, emotionally and perhaps physically. Those of us in that situation grow up with our self worth tied up in caring for the parent (and often others too, a natural extension of the grooming that takes place. Many people in service professions come from families impacted by NPD/BPD.)

You absolutely have to set boundaries and learn to say "no" when those boundaries are crossed. In my 30s, I had my lightbulb moment that my children and husband would suffer if I did not stop feeding the black hole of neediness that was my mother. It was excruciating, on many levels. One never feels good about seemingly turning one's back on a person in "need", and for those of us who grew up feeling "good" and significant when we cared for another, this can leave us feeling lost. But it is necessary if we are to break the cycle and raise healthy children.

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On 7/24/2018 at 8:13 AM, 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.

Good luck!  Take care of your family.  I've been out of the volcano for 2 years (after 4 years in), and I'm just starting to recover mentally, emotionally, and physically (my marriage OTOH, may never recover.)  

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11 hours ago, TechWife said:

You have to be very careful with this. There is a five year look back period, which is the amount of time the state will go back and look for assets. Any property transfers or money transfers into a trust or sold within  that five year period would be counted in her spend down amount to qualify her for Medicaid. At this point, with skilled care needed, her assets should be used to pay for her current care, not placed in a trust for future use. Yes, this means any savings or retirement benefits go to pay the  nursing home until they are gone. Any property of value is sold and the money is used to pay for her care until it is gone. In some states you don’t have to sell the primary residence if there is another family member living in it, but the state would put a lien on it so that when it is sold the funds go to the state to reimburse for care.  If anyone is interested in forming a trust to protect assets, then consult an attorney for the laws in the state in which the person resides. 

 

Also in some states the house an be kept if there is a chance that person may get out of nursing home and want to go back to the house— for example if she got stronger while in the NH and learned to care for herself  despite her limitations.  

Some nursing homes have staff members knowledgeable about the details in that locale. They have to be prepared for old people coming in with no family at all to help with arrangements. 

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2 hours ago, Joules said:

Good luck!  Take care of your family.  I've been out of the volcano for 2 years (after 4 years in), and I'm just starting to recover mentally, emotionally, and physically (my marriage OTOH, may never recover.)  

 

Hugs to you, Joules. You and Laura Corin, Creekland, Faithmanor, Techwife & now Patty Joanna... and others. I think of all of you. Before the board revamp I was going to start a social group for recovering caregivers. But I am still having trouble navigating the new site and have only recently begun popping in again. Maybe when summer slows down I'll figure it out. 

OP, the sad truth is that no matter what actions you take, you will feel slimed by a layer of guilt. You can choose not to wear it! It will pursue you, you have NOT earned it by any stretch of the imagination, no matter what false expectations others have of you. Just be aware of it and be ready to call it what is. Name it and cast it aside!

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15 hours ago, cera2 said:

You need to meet with the facility social worker and make it very clear to them that you are no longer available to provide care for her.  If there is t a family member available to do the home care, and she isn’t able to do it herself, they won’t release her.  If they do release her they willworkto set up Home health visits for the services she needs.

 

Totally agree. 

 

Except that I think it should be put in writing. And personally if this were me I would  send certified or by fax to hospital, rehab, social worker, etc. that gives a proof that it was received. I might do both. Fax for speed and follow that up with USPS hard copy. 

 

Otherwise Jane Doe who is spoken to orally may or may not get the information down clearly where it needs to be and the mother may be asserting that pitterpatter will be taking care of her as always.   And when mother is in difficulty and pitterpatter is blamed there will be no proof that the facility was informed. 

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Just now, Pen said:

 

Totally agree. 

 

Except that I think it should be put in writing. And personally if this were me I would tell them orally, and  send it in writing by certified mail or by fax to hospital, rehab, social worker, etc. so as to get a proof that it was received. I might do all three. Oral communication, plus Fax for speed, plus follow that up with USPS hard copy. 

 

Otherwise Jane Doe who is spoken to orally may or may not get the information down clearly where it needs to be and the mother may be asserting that pitterpatter will be taking care of her as always and the facility assuming that same thing. And when mother is sent home and is in difficulty and pitterpatter is blamed there will be no proof that the facility was informed. 

 

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On 7/23/2018 at 3:43 PM, 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.

 

No it is NOT your problem to solve.  Or more accurately, you do not have an obligation to solve it according to their demands. If they don't like your solutions - they can damn well solve it themselves.

You need to sit down with your husband and clearly state what you are willing and able to do realisticly.  This is NOT about what anyone else needs or thinks you should do.  They don't get a vote in how you order your life to help them.

The live in guy can either pitch in or move out. You have zero obligation to care about his sensibilities.  

She cannot have appts without you.  Period.  I guarantee you she is telling them she doesn't need help at home.  Go with her.  Be blunt.  If they give you crap about it, toss it right back at them.  "Listen, I'm doing what I can for her, but I will not be moving in with her and she is not moving in with me.  I cannot afford to stop working to give her nursing care and that Guy living with her flat out refuses to even learn how to do it.  Mom is not telling you the truth of her needs bc she refuses to accept how bad it is.  If you send her home, she will be right back here within a couple days bc I cannot take care of her and no one else is going to show up to do it.  Can you please tell me how to get her the care she needs?"

You need a better picture of her finances.  If the house is sold and she's moved somewhere smaller, plus her retirement, where does that leave her? Honestly, there's no way she can get a Medicaid to pay for much of anything if she own equity in a house.  Even moving her to a small apartment might open the door to some kind of assisted living situation.  But it won't include the live in guy. And I would speak with a lawyer about how being her BPOA and or executor can affect your finances.  Wish to heck I'd done that.  There are affordable professionals who can point you to the best resources, buy you have to hunt them like some kind of rare subterranian salamander.  Talk to people.  Others have btdt.  Listen to their advice.  Does your church (if you have one) have support groups or women's groups that you could ask for local advice? 

You can help her, but the help you offer MUST be on your terms.  You can say no.  And frankly, you should say no specificly so she can get the care she needs set up.  It won't happen until you do, and there's no point extending your family misery by putting it off. 

(((Hugs)))

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My grandfather's hospice situation at my mother's house with the 4 adult grandkids helping was doable.  My grandmother's situation was not doable. Grandad was home and later grandmother was at a facility because she needed full time nursing care. That's just how it was.  Some situations are stay at home situations and some aren't.  It sounds like yours isn't an at home situation because she clearly needs full time nursing/nursing assistant care.  I have a cousin who's a CNA-she gets paid for that because she's got specialized training and a schedule.

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5 minutes ago, pitterpatter said:

I met with my mom's case worker today. Unless she makes miraculous improvements in the next day or two, she will be transitioning to a nursing facility next week. My mom is understandably sad. I feel like crap.

I'm sending virtual hugs to you. Both your reaction & your mom's reaction is normal. I'm glad the case worker is working on this, though. It really is best for everyone.

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9 minutes ago, pitterpatter said:

I met with my mom's case worker today. Unless she makes miraculous improvements in the next day or two, she will be transitioning to a nursing facility next week. My mom is understandably sad. I feel like crap.

 

I'm sorry.  You're doing the right thing for everyone.  She will likely adjust and feel much better in less than 3 weeks.

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12 minutes ago, pitterpatter said:

I met with my mom's case worker today. Unless she makes miraculous improvements in the next day or two, she will be transitioning to a nursing facility next week. My mom is understandably sad. I feel like crap.

 

I am really sorry you feel like crap, but this is the right thing that needs to happen. It is normal to feel sad about needing to go to a nursing facility, but it is what she needs. After she adjusts she may even like many aspects of it. She may make friends there and be able to participate in activities that she will enjoy for example. 

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I can't offer any concrete help, but I just wanted to send a million hugs. I grew up with two narcissistic parents and narcissists are off-the-charts crazy. You MUST take care of yourself, your husband and your child. The narcissist will demand everything of you.

♥♥♥

Alley

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2 hours ago, Pen said:

 

I am really sorry you feel like crap, but this is the right thing that needs to happen. It is normal to feel sad about needing to go to a nursing facility, but it is what she needs. After she adjusts she may even like many aspects of it. She may make friends there and be able to participate in activities that she will enjoy for example. 

...and even if she doesn’t...that is largely up to her to decide.   

One of the great prayers I have for myself is that I learn to be content in whatever situation I find myself.  My batting average is fairly low at the moment but the circs of my life are teaching me more about this state of being...thank God.  I have a feeling that I have to develop thus now because the more I form myself in this direction, the more hope I have of living into it if things get out of whack.  

It CAN be too late to form this attitude...but that doesn’t mean the wrong attitude is right.  

If your mom learns to stop complaining and to be thankful, that will be a good thing.  But it is not you who can teach her this.  She has to learn it (if she can) in a very hard way.  

Visit her, bring her gifts, but do not let her moan at or complain to you.  The battle to goodness is hers.  Your battle is to live her within the limits of the commitments you have to your nuclear family..the obligations that only you can meet.  You can honor your mother by treating her like a person—not a pet—and visiting and helpongbas you can without self-immolation (or providing well intentioned but truly inadequate care).  

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3 hours ago, pitterpatter said:

I met with my mom's case worker today. Unless she makes miraculous improvements in the next day or two, she will be transitioning to a nursing facility next week. My mom is understandably sad. I feel like crap.

 

I understand why you would be feeling sadness, even grief over your mother's circumstances. 

But, if you are feeling "like crap" because you couldn't "save" her from a nursing home...please take a step back and remember that none of this is your fault. Patty Joanna's words are so wise! Take them in, and don't absorb guilt. 

 

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