For those well-meaning social workers

[Anonymous]

I am the OP. We changed hospices here in the valley to a non-profit hospice that also works on donation, as well as Medicare/Medicaid. The difference is remarkable.

Unfortunately, there are two different sagas here.

[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.

This message board is full of vultures waiting to attack others for their private pleasure. It’s an illness for sure. I just ignore them. As I said above, sticks and stones.

All I require to start my day is a cup of coffee and a hot shower. Could not get both here. Took a month to get the plumbing problems sorted out (crappy initial plumber and difficult homeowner) and the coffee pot would not heat. Try to explain to a cheap, elderly, sick individual that you are getting another? The sh(storm is amazing. I steal out very early every AM to a DD to get my one cup.

[Anonymous]

What a lot of hospices will try to do is put all the work on the caregiver, or anyone around the dying, including elderly who can’t physically handle the work. As some people die, they get increasingly agitated which is very disturbing. My aunt was grossly mis-managed by the other hospice re: pain management and very disoriented (dying tends to do that). Examples: she thought she needed a new TV because she can no longer work the remote properly, then she blamed it on my brother because he was watching football on another TV in her house a month ago and it “migrated” to her bedroom TV. She is also demanding a hospital bed despite being IN a remote operated hospital bed because she can’t understand why it’s so hard to try and get up to stand and go about her business. She has no idea that’s due to her deteriorating body. She’s neon yellow from liver failure. Now that she’s properly medicated, she’s much calmer and out of pain.

[Anonymous]

Anonymous wrote:

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.

This message board is full of vultures waiting to attack others for their private pleasure. It’s an illness for sure. I just ignore them. As I said above, sticks and stones.

All I require to start my day is a cup of coffee and a hot shower. Could not get both here. Took a month to get the plumbing problems sorted out (crappy initial plumber and difficult homeowner) and the coffee pot would not heat. Try to explain to a cheap, elderly, sick individual that you are getting another? The sh(storm is amazing. I steal out very early every AM to a DD to get my one cup.

You may not realize, but the person talking in the mirror is you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

This message board is full of vultures waiting to attack others for their private pleasure. It’s an illness for sure. I just ignore them. As I said above, sticks and stones.

All I require to start my day is a cup of coffee and a hot shower. Could not get both here. Took a month to get the plumbing problems sorted out (crappy initial plumber and difficult homeowner) and the coffee pot would not heat. Try to explain to a cheap, elderly, sick individual that you are getting another? The sh(storm is amazing. I steal out very early every AM to a DD to get my one cup.

You may not realize, but the person talking in the mirror is you.

LOL. Vulture

[Anonymous]

Anonymous wrote:OP here. For those starting this journey, beware. All the social worker did was ask me who could pay, and would not answer any questions about what Medicare benefits they are entitled to in a meaningful way. She went as far as asking me about which relatives had money and which didn’t. I thought that was beyond the pale.

OP, one of the reasons the social worker is asking these questions is that Medicare pays for a very limited amount of long-term care. Hospice is not intended to be 24/7 care (although there is inpatient hospice, but beds are scarce.) Hospice is intended to wrap around other caregiving, usually provided by the family, but sometimes provided in a nursing home. It's possible your aunt isn't a candidate for at-home hospice care.

[Anonymous]

OP is getting a lot of negative feedback here. I don't think she deserves it.

From her posts it is obvious that she is angry, frustrated and tired. Are you surprised? Put yourselves in her shoes.

She's 3000 miles away from her home and her husband.

She's had to close her business (temporarily, I presume) so she's losing money (if no one else is looking after the business in her absence).

She's looking after 3 adults who are elderly and/or sick, 1 of whom is dying - 3000 miles from where OP lives.

She's had to deal with social workers, hospices, medical staff, various legislative issues, etc. Sounds like a nightmare.

She has mentioned that she comes from a very large family and she is one of 32 nieces and nephews. Most of them do nothing.
She has a sister but it is unclear if her sister is helping with caregiving.

OP is there, doing all the legwork.

I was in a similar situation once, although I didn't live 3000 miles from my sick parent. I was there, on my own, without my husband. I looked for more appropriate accommodation for my parent but either it wasn't available to him or he didn't qualify. And it didn't help that my parent could be very stubborn and difficult and that he cancelled his home aides and his cleaner behind my back.
No one in my family was helping and no one was listening. Social workers couldn't really help either. I was on my own. I get OP's anger and frustration. I really do.
It's a lonely place to be.

[Anonymous]

Anonymous wrote:OP is getting a lot of negative feedback here. I don't think she deserves it.

From her posts it is obvious that she is angry, frustrated and tired. Are you surprised? Put yourselves in her shoes.

She's 3000 miles away from her home and her husband.

She's had to close her business (temporarily, I presume) so she's losing money (if no one else is looking after the business in her absence).

She's looking after 3 adults who are elderly and/or sick, 1 of whom is dying - 3000 miles from where OP lives.

She's had to deal with social workers, hospices, medical staff, various legislative issues, etc. Sounds like a nightmare.

She has mentioned that she comes from a very large family and she is one of 32 nieces and nephews. Most of them do nothing.
She has a sister but it is unclear if her sister is helping with caregiving.

OP is there, doing all the legwork.

I was in a similar situation once, although I didn't live 3000 miles from my sick parent. I was there, on my own, without my husband. I looked for more appropriate accommodation for my parent but either it wasn't available to him or he didn't qualify. And it didn't help that my parent could be very stubborn and difficult and that he cancelled his home aides and his cleaner behind my back.
No one in my family was helping and no one was listening. Social workers couldn't really help either. I was on my own. I get OP's anger and frustration. I really do.
It's a lonely place to be.

Thank you PP. So much!! It’s 4:40 AM here on the west coast, and I’m awake because I went to the bathroom and always peek in on my aunt. Found her sitting in a chair, pee everywhere, etc, because she was too weak to make it to the bathroom. She’s lucky she made it to the chair. I could not lift her, had to call 911 for a lift assist. Even then it was everyone else’s fault because ‘the chair was in her way’. Can barely speak but got the blame out just fine. I feel badly for her sure, but there’s nothing physically more I can do for her here, and she keeps telling Hospice she will not go into their lovely center. So she will die in probably a urine/poop soaked bed in the end or on the floor, that’s what the social worker said. Which is truly sad

[Anonymous]

Right, OP. And it sucks -- it absolutely sucks for her, and absolutely for you. This is not a rare thing; it is happening across the country, all the time.

Because people cannot force her against her wishes to change the situation, unless you have a determination of incompetence to make her own choice. You said that was obviously the case now -- so have you sought that determination? If not, this will not change.

[Anonymous]

^^And that's not because the social workers or doctors hate you, OP, or want to make your life miserable, or don't care about you, or her. It's because they CAN'T change it, anymore than you can.

Not without a declaration of incompetence and placement.

I suspect they know that she is not at that point yet, even if you might think she is. I suspect that disconnect is at the root of your anger, but they can't fix it.

[Anonymous]

Anonymous wrote:Right, OP. And it sucks -- it absolutely sucks for her, and absolutely for you. This is not a rare thing; it is happening across the country, all the time.

Because people cannot force her against her wishes to change the situation, unless you have a determination of incompetence to make her own choice. You said that was obviously the case now -- so have you sought that determination? If not, this will not change.

Yes I’ve sought it and they say competent. In a day or so, she won’t be - she will either have passed or they will move her to inpatient. The social worker said once semi-comatose, they can.

[Anonymous]

Anonymous wrote:^^And that's not because the social workers or doctors hate you, OP, or want to make your life miserable, or don't care about you, or her. It's because they CAN'T change it, anymore than you can.

Not without a declaration of incompetence and placement.

I suspect they know that she is not at that point yet, even if you might think she is. I suspect that disconnect is at the root of your anger, but they can't fix it.

This is a new hospice and the difference, as I said, is night and day. The other social worker was only interested in taking everything they could financially because she was not eligible for Medicaid - she just missed the cutoff due to a small pension on top of SS. The new one from the new hospice is much more helpful as they understand I am dealing with THREE elderly individuals

[Anonymous]

I'm glad you have found a service that you feel really hears you and supports you. Even if the trajectory doesn't change overall, that really means something, OP. You are suffering your own trauma from this.

I'm not using that word lightly. I remember this with my own mother.

[Anonymous]

Anonymous wrote:^^And that's not because the social workers or doctors hate you, OP, or want to make your life miserable, or don't care about you, or her. It's because they CAN'T change it, anymore than you can.

Not without a declaration of incompetence and placement.

I suspect they know that she is not at that point yet, even if you might think she is. I suspect that disconnect is at the root of your anger, but they can't fix it.

And as I said, the new hospice is non-profit and thus can take donations. They do so much more and I intend to donate as well from her home proceeds. Why some of you don’t understand there are good and bad hospices and social workers is beyond me, but this is DCUM and there you are! TBH, I find the people in the DC area to be insufferable and plan to leave

[Anonymous]

Anonymous wrote:I'm glad you have found a service that you feel really hears you and supports you. Even if the trajectory doesn't change overall, that really means something, OP. You are suffering your own trauma from this.

I'm not using that word lightly. I remember this with my own mother.

Thank you so much. It’s definitely, and unnecessarily in some ways, traumatic. I feel for my aunt in all her confusion and weakness now. She deserves to die with dignity and is preventing that, which is sad. This hospice, Hospice of the Valley, sets the standard for all others.