For those well-meaning social workers

[Anonymous]

Anonymous wrote:OP it’s a very difficult situation. And the other 32 family members who did nothing will all have opinions. They may even blame you.
As for the SW. Some are great but others … it’s a field that attracts some bossy and unpleasant people.

Some are blaming me, yes. Sticks and stones. I am so SO grateful to this new hospice! The difference is dramatic.

[Anonymous]

Anonymous wrote:

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Anonymous wrote:Medicare services are based on medical necessity as ordered by the physician, not on what is easier for the social worker. However even for people who qualify for in home personal care services (people who meet nursing home level of care and meet Medicaid income and eligibility requirements mostly) it is extremely hard to find qualified workers right now. Also extremely hard to find nursing home beds. Social workers can’t fix that.

So since my aunt is end stage pancreatic cancer, lives alone ,has no kids, I guess the hospice will leave her in bed to die and rot,right? Because I am leaving in a week regardless - I have no choice.

Do you think the social worker has more choice to move in with her than you do? Or more responsibility?

I'm not saying you have responsibility to do so. I'm saying your problem -- and it is a problem, since you are taking it out on other people -- is in insisting others have more responsibility than you. It is not sufficient to compel you, but that does not follow that that it must then be sufficient to compel them.

It’s not my problem. And I won’t make it my problem.The state MUST step in as the situation is unsafe. That’s the damn law.

The state must step in to make decisions for an adult that meets the legal definitions of competence in this area, against their explicit and expressed wishes? At gunpoint, or just by having the police drag them and then, I guess, handcuff them in place?

According to hospice, she no longer meets the legal definition of competence. Such is the dying process

Right, but does that particular hospice make the decision, or is it someone else, such as a judge? Because sometimes people will tell you things that are not true. You know this.

You can walk away right now. Absolutely. If you want to spend any more energy or time on this effectively, then you first get this ruling made -- and this is key -- by the person who can make it. If that fails there is nothing you or anyone else can do against her wishes. If it goes through, then when you leave, the machinery of the hospital can do things that they didn't before.

Have you watched someone die? They are no longer coherent and can’t speak sense. The decision of competence becomes obvious

First, that is not what has been described in OP's problem. Second, if nobody were taking her as competent to refuse, then OP would have nobody she had to push back against.

We can talk about situations that aren't actually happening if you really want, but that would only be for your entertainment. It wouldn't address what is actually happening here.

I am OP That IS the situation. I’ve been here a month and the deterioration has been rapid enough that soon, she will not be able to make choices. The hospice person said that’s when they move them to inpatient hospice. Right NOW they can’t take her against her will. Give it a week and the situation will probably change dramatically. She’s completely yellow from liver failure. She’s going grey. She’s incoherent a lot of the time, then rallies a bit and walks and eats. They said that’s a typical swing (I asked because I didn’t understand what was going on and the old hospice was useless for answering questions). I can walk away right now, indeed I can. But my moral code will not allow me to completely leave until I know hospice was stepping in. The new hospice fully understands that and is helping me with that goal. As I said, they are just wonderful. Tomorrow the old hospice will be fired, and I will report them to the state board.

[Anonymous]

This is the new hospice for those interested. I cannot say enough good things about them:

https://www.hov.org/?msclkid=a8fe3d301fdd1f43174d5ceb02c4b5bc

[Anonymous]

I'm glad you have found helpful people to work with and have some relief.

This was your first paragraph of your first post, and it was the (absolutely frustrating, and absolutely very difficult) situation I was responding to:

I flew cross-country in the middle of a pandemic thinking my mother was on death's door. She (thankfully) survived and is at the end of acute rehab and going home tomorrow. My aunt lives nearby and is in end-stage cancer. I didn't know how end-stage it was until I got here (she sounds better on the phone then she actually is). So I've been bouncing for the past two weeks between rehab and my aunt's home. The first thing my mother says when I get here is "oh good, now your sister can continue to work". Um, I had to close my business to come here on an open-ended timeframe.

If she can sound of mind on the phone, she isn't going to be declared non-competent to choose -- and regardless, the hospice isn't going to make that determination.

But yes, if she becomes absolutely non-coherent and is obviously unable to make her own choices (and that bar is higher than you think), then she will get placement somewhere, regardless of what her wishes expressed to do used to be.

Either way, you can walk away at any time. Of course you can. But that doesn't mean anyone has to give her the personal attention you can't, over and above basic care for a medical patient. That has to be good enough, OP because it is what there is for her at that point, unless someone (aunt, you, etc.) pays for more. It sounds like someone will pay this new hospice service, and once she either accepts or can't decline, that may be the best outcome one could wish for here.

[Anonymous]

Anonymous wrote:I'm glad you have found helpful people to work with and have some relief.

This was your first paragraph of your first post, and it was the (absolutely frustrating, and absolutely very difficult) situation I was responding to:

I flew cross-country in the middle of a pandemic thinking my mother was on death's door. She (thankfully) survived and is at the end of acute rehab and going home tomorrow. My aunt lives nearby and is in end-stage cancer. I didn't know how end-stage it was until I got here (she sounds better on the phone then she actually is). So I've been bouncing for the past two weeks between rehab and my aunt's home. The first thing my mother says when I get here is "oh good, now your sister can continue to work". Um, I had to close my business to come here on an open-ended timeframe.

If she can sound of mind on the phone, she isn't going to be declared non-competent to choose -- and regardless, the hospice isn't going to make that determination.

But yes, if she becomes absolutely non-coherent and is obviously unable to make her own choices (and that bar is higher than you think), then she will get placement somewhere, regardless of what her wishes expressed to do used to be.

Either way, you can walk away at any time. Of course you can. But that doesn't mean anyone has to give her the personal attention you can't, over and above basic care for a medical patient. That has to be good enough, OP because it is what there is for her at that point, unless someone (aunt, you, etc.) pays for more. It sounds like someone will pay this new hospice service, and once she either accepts or can't decline, that may be the best outcome one could wish for here.

That was a month ago. With end stage pancreatic cancer, it moves fast. I agree it has to be good enough. Things have looked up for sure. Thank you.

[Anonymous]

Sorry, I thought you started the thread less than two weeks ago? That may have been the confusion.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, go back home. Go back to your house and your husband, and reopen your business. It's time for you to step back now.

Why isn't your sister helping more?

You say that you have a very large family and that you are one of 32 nieces and nephews. Why is no one else volunteering?
Why should it be YOU?

I was in a similar position years ago, when my father (a widower) was very ill but he refused to move to more appropriate accommodation and he also cancelled the home aides I had organized for him.

I am an only child and my husband and I live 6 hours away.
DH and I would drive to my father's house whenever we were able to, to help at weekends (DH and I both work) but in the end it was unsustainable to drive there every weekend.

Most of my (able-bodied) relatives lived about 10 minutes away from my father's house but NO ONE volunteered to help, even just checking in or calling my father to see if he was OK.
To be fair, one of my uncles and his wife did buy and deliver my father's groceries for a while but they grew tired of it eventually.

The burden landed on my shoulders in the end, even if I lived 6 hours away.

I’m so sorry to hear that no one was willing to help you either. It’s really so sad, isn’t it? I was given a list of vetted caregivers by the new hospice and it was like being thrown a lifeline! I would know where to look in my own state but here I’m at a loss. I started calling today. She also had a younger friend of hers come forward today and ask if she can come help as well. What a Godsend! She’s a wonderful lady - know my folks and my aunt for over 22 years and I gotta tell you, my aunt is a very difficult person. TBH, she’s going downhill fast so I’ll probably stay at least another week, now that the new hospice is in place as well as her friend, and someone we hire by the hour. A few cousins stepped forward and offered to help fund the caregivers. That’s going to help a lot!

Hi OP, I'm the PP.
The new hospice sounds much better. Good that the friend has offered to help in person and that a few cousins have offered to help fund the caregivers. That must be a great help.

It is incredibly frustrating when no one is helping and no one is listening - especially one's own (close) relatives.
Your 3000 miles in distance from your parents and aunt is much further than my 6-7 hour drive to my father's house. But still ... It became clear to me and my DH that it would become unsustainable for us to drive there every weekend.

Home aides can only do so much.

I got mad, frustrated and stressed that most of my close relatives - who all lived within 10 minutes from my father's house - did very little to help. Or nothing at all.

I get that I am an only child and therefore I was the main caregiver and it was my responsibility but I think my relatives could have at least offered to help.
I was even 'shamed' by one of the doctors at the hospital for being an only child and living so far away from my dad. I was 40 and married!

[Anonymous]

Anonymous wrote:Social workers aren’t personal assistants. WTF did you expect? It’s not their job to force your parents to do anything. The blame here is seriously misplaced.

Gotta say I agree. I get OP's frustration with the situation and her parents, but if her parents don't want to downsize, a social worker certainly can't force them to do it if the child can't.

[Anonymous]

Anonymous wrote:There isn't much "the system" can offer unless and until the parents are out of funds. That includes the house being sold. When things get to that stage the next step is to get them certified for Medicaid/Medicare and find a facility that will take them.

OP, seriously - you need to get some mental help for yourself STAT. Your anger and vitriol is beyond normal and can only be a horrible way for you to exist, not to mention those around you. Please reach out and get professional help.

Technically the house does not need to be sold if there is a communal/community (can't remember the term now) spouse who is living in it. But if both were to enter a nursing home at one time and there was no other money, then the house would need to be put on the market stat. And OP, it has to be a nursing home for Medicaid, not assisted living or any other kind of set up - only a nursing home.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, go back home. Go back to your house and your husband, and reopen your business. It's time for you to step back now.

Why isn't your sister helping more?

You say that you have a very large family and that you are one of 32 nieces and nephews. Why is no one else volunteering?
Why should it be YOU?

I was in a similar position years ago, when my father (a widower) was very ill but he refused to move to more appropriate accommodation and he also cancelled the home aides I had organized for him.

I am an only child and my husband and I live 6 hours away.
DH and I would drive to my father's house whenever we were able to, to help at weekends (DH and I both work) but in the end it was unsustainable to drive there every weekend.

Most of my (able-bodied) relatives lived about 10 minutes away from my father's house but NO ONE volunteered to help, even just checking in or calling my father to see if he was OK.
To be fair, one of my uncles and his wife did buy and deliver my father's groceries for a while but they grew tired of it eventually.

The burden landed on my shoulders in the end, even if I lived 6 hours away.

I’m so sorry to hear that no one was willing to help you either. It’s really so sad, isn’t it? I was given a list of vetted caregivers by the new hospice and it was like being thrown a lifeline! I would know where to look in my own state but here I’m at a loss. I started calling today. She also had a younger friend of hers come forward today and ask if she can come help as well. What a Godsend! She’s a wonderful lady - know my folks and my aunt for over 22 years and I gotta tell you, my aunt is a very difficult person. TBH, she’s going downhill fast so I’ll probably stay at least another week, now that the new hospice is in place as well as her friend, and someone we hire by the hour. A few cousins stepped forward and offered to help fund the caregivers. That’s going to help a lot!

Hi OP, I'm the PP.
The new hospice sounds much better. Good that the friend has offered to help in person and that a few cousins have offered to help fund the caregivers. That must be a great help.

It is incredibly frustrating when no one is helping and no one is listening - especially one's own (close) relatives.
Your 3000 miles in distance from your parents and aunt is much further than my 6-7 hour drive to my father's house. But still ... It became clear to me and my DH that it would become unsustainable for us to drive there every weekend.

Home aides can only do so much.

I got mad, frustrated and stressed that most of my close relatives - who all lived within 10 minutes from my father's house - did very little to help. Or nothing at all.

I get that I am an only child and therefore I was the main caregiver and it was my responsibility but I think my relatives could have at least offered to help.
I was even 'shamed' by one of the doctors at the hospital for being an only child and living so far away from my dad. I was 40 and married!

Shame on the doctor for shaming you - that's so wrong.

That said, it is a lot to expect relatives to help. I was so fortunate that one of my cousins helped out with my mom after my dad died. She would come by with my dad's sister - they would visit, go out to eat, etc. My cousin barely has two nickels to rub together. She refused to take money, so I started giving her Visa gift cards whenever I came to town. I would give it to her right at the end when I was running out. She then used it to take out my mom and her mom, etc. But my cousin was only able to do that as she was already retired and even her grandkids were old enough to not need her looking after them, etc. My aunt also missed my dad, so spending time with my mom also provided some comfort.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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Anonymous wrote:

Anonymous wrote:Medicare services are based on medical necessity as ordered by the physician, not on what is easier for the social worker. However even for people who qualify for in home personal care services (people who meet nursing home level of care and meet Medicaid income and eligibility requirements mostly) it is extremely hard to find qualified workers right now. Also extremely hard to find nursing home beds. Social workers can’t fix that.

So since my aunt is end stage pancreatic cancer, lives alone ,has no kids, I guess the hospice will leave her in bed to die and rot,right? Because I am leaving in a week regardless - I have no choice.

Do you think the social worker has more choice to move in with her than you do? Or more responsibility?

I'm not saying you have responsibility to do so. I'm saying your problem -- and it is a problem, since you are taking it out on other people -- is in insisting others have more responsibility than you. It is not sufficient to compel you, but that does not follow that that it must then be sufficient to compel them.

It’s not my problem. And I won’t make it my problem.The state MUST step in as the situation is unsafe. That’s the damn law.

The state must step in to make decisions for an adult that meets the legal definitions of competence in this area, against their explicit and expressed wishes? At gunpoint, or just by having the police drag them and then, I guess, handcuff them in place?

According to hospice, she no longer meets the legal definition of competence. Such is the dying process

Right, but does that particular hospice make the decision, or is it someone else, such as a judge? Because sometimes people will tell you things that are not true. You know this.

You can walk away right now. Absolutely. If you want to spend any more energy or time on this effectively, then you first get this ruling made -- and this is key -- by the person who can make it. If that fails there is nothing you or anyone else can do against her wishes. If it goes through, then when you leave, the machinery of the hospital can do things that they didn't before.

Have you watched someone die? They are no longer coherent and can’t speak sense. The decision of competence becomes obvious

First, that is not what has been described in OP's problem. Second, if nobody were taking her as competent to refuse, then OP would have nobody she had to push back against.

We can talk about situations that aren't actually happening if you really want, but that would only be for your entertainment. It wouldn't address what is actually happening here.

I am OP That IS the situation. I’ve been here a month and the deterioration has been rapid enough that soon, she will not be able to make choices. The hospice person said that’s when they move them to inpatient hospice. Right NOW they can’t take her against her will. Give it a week and the situation will probably change dramatically. She’s completely yellow from liver failure. She’s going grey. She’s incoherent a lot of the time, then rallies a bit and walks and eats. They said that’s a typical swing (I asked because I didn’t understand what was going on and the old hospice was useless for answering questions). I can walk away right now, indeed I can. But my moral code will not allow me to completely leave until I know hospice was stepping in. The new hospice fully understands that and is helping me with that goal. As I said, they are just wonderful. Tomorrow the old hospice will be fired, and I will report them to the state board.

Just because the new hospice is handling it this way doesn't mean that the old hospice technically did anything wrong.

[Anonymous]

Anonymous wrote:

Anonymous wrote:There isn't much "the system" can offer unless and until the parents are out of funds. That includes the house being sold. When things get to that stage the next step is to get them certified for Medicaid/Medicare and find a facility that will take them.

OP, seriously - you need to get some mental help for yourself STAT. Your anger and vitriol is beyond normal and can only be a horrible way for you to exist, not to mention those around you. Please reach out and get professional help.

Technically the house does not need to be sold if there is a communal/community (can't remember the term now) spouse who is living in it. But if both were to enter a nursing home at one time and there was no other money, then the house would need to be put on the market stat. And OP, it has to be a nursing home for Medicaid, not assisted living or any other kind of set up - only a nursing home.

Reading is fundamental as my AUNT is the one with cancer and needing hospice/Medicaid while my PARENTS plan to sell their home and move east, using that money gained for their future.

DCUM is a sh(t storm of made up crap

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Medicare services are based on medical necessity as ordered by the physician, not on what is easier for the social worker. However even for people who qualify for in home personal care services (people who meet nursing home level of care and meet Medicaid income and eligibility requirements mostly) it is extremely hard to find qualified workers right now. Also extremely hard to find nursing home beds. Social workers can’t fix that.

So since my aunt is end stage pancreatic cancer, lives alone ,has no kids, I guess the hospice will leave her in bed to die and rot,right? Because I am leaving in a week regardless - I have no choice.

Do you think the social worker has more choice to move in with her than you do? Or more responsibility?

I'm not saying you have responsibility to do so. I'm saying your problem -- and it is a problem, since you are taking it out on other people -- is in insisting others have more responsibility than you. It is not sufficient to compel you, but that does not follow that that it must then be sufficient to compel them.

It’s not my problem. And I won’t make it my problem.The state MUST step in as the situation is unsafe. That’s the damn law.

The state must step in to make decisions for an adult that meets the legal definitions of competence in this area, against their explicit and expressed wishes? At gunpoint, or just by having the police drag them and then, I guess, handcuff them in place?

According to hospice, she no longer meets the legal definition of competence. Such is the dying process

Right, but does that particular hospice make the decision, or is it someone else, such as a judge? Because sometimes people will tell you things that are not true. You know this.

You can walk away right now. Absolutely. If you want to spend any more energy or time on this effectively, then you first get this ruling made -- and this is key -- by the person who can make it. If that fails there is nothing you or anyone else can do against her wishes. If it goes through, then when you leave, the machinery of the hospital can do things that they didn't before.

Have you watched someone die? They are no longer coherent and can’t speak sense. The decision of competence becomes obvious

First, that is not what has been described in OP's problem. Second, if nobody were taking her as competent to refuse, then OP would have nobody she had to push back against.

We can talk about situations that aren't actually happening if you really want, but that would only be for your entertainment. It wouldn't address what is actually happening here.

I am OP That IS the situation. I’ve been here a month and the deterioration has been rapid enough that soon, she will not be able to make choices. The hospice person said that’s when they move them to inpatient hospice. Right NOW they can’t take her against her will. Give it a week and the situation will probably change dramatically. She’s completely yellow from liver failure. She’s going grey. She’s incoherent a lot of the time, then rallies a bit and walks and eats. They said that’s a typical swing (I asked because I didn’t understand what was going on and the old hospice was useless for answering questions). I can walk away right now, indeed I can. But my moral code will not allow me to completely leave until I know hospice was stepping in. The new hospice fully understands that and is helping me with that goal. As I said, they are just wonderful. Tomorrow the old hospice will be fired, and I will report them to the state board.

Just because the new hospice is handling it this way doesn't mean that the old hospice technically did anything wrong.

State will determine as four of us are filing reports

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There isn't much "the system" can offer unless and until the parents are out of funds. That includes the house being sold. When things get to that stage the next step is to get them certified for Medicaid/Medicare and find a facility that will take them.

OP, seriously - you need to get some mental help for yourself STAT. Your anger and vitriol is beyond normal and can only be a horrible way for you to exist, not to mention those around you. Please reach out and get professional help.

Technically the house does not need to be sold if there is a communal/community (can't remember the term now) spouse who is living in it. But if both were to enter a nursing home at one time and there was no other money, then the house would need to be put on the market stat. And OP, it has to be a nursing home for Medicaid, not assisted living or any other kind of set up - only a nursing home.

Reading is fundamental as my AUNT is the one with cancer and needing hospice/Medicaid while my PARENTS plan to sell their home and move east, using that money gained for their future.

DCUM is a sh(t storm of made up crap

OP, you have a lot of anger. A lot. Expecting people to grasp every detail of two different sagas is really too much. If you have piqued the ire of folks on a message board, I can only imagine how you treat people in person. The contempt you display for pretty much everyone but yourself is fairly astounding.

Please get some help. If not for you, then for the people you interact with on the street, at work, or regarding your relatives.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:There isn't much "the system" can offer unless and until the parents are out of funds. That includes the house being sold. When things get to that stage the next step is to get them certified for Medicaid/Medicare and find a facility that will take them.

OP, seriously - you need to get some mental help for yourself STAT. Your anger and vitriol is beyond normal and can only be a horrible way for you to exist, not to mention those around you. Please reach out and get professional help.

Technically the house does not need to be sold if there is a communal/community (can't remember the term now) spouse who is living in it. But if both were to enter a nursing home at one time and there was no other money, then the house would need to be put on the market stat. And OP, it has to be a nursing home for Medicaid, not assisted living or any other kind of set up - only a nursing home.

Reading is fundamental as my AUNT is the one with cancer and needing hospice/Medicaid while my PARENTS plan to sell their home and move east, using that money gained for their future.

DCUM is a sh(t storm of made up crap

OP, you have a lot of anger. A lot. Expecting people to grasp every detail of two different sagas is really too much. If you have piqued the ire of folks on a message board, I can only imagine how you treat people in person. The contempt you display for pretty much everyone but yourself is fairly astounding.

Please get some help. If not for you, then for the people you interact with on the street, at work, or regarding your relatives.

I agree as do many others but it's obvious OP will not listen and is oblivious to the vitriol and anger spewed at everyone. IMO if OP believes "DCUM is a sh(t storm of made up crap" then this entire thread (and others OP have posted) should be deleted.