sister end of life

[YakGrl]

I have been in this situation with a sister. If you do not volunteer to do 24/7 yourself, stress to the hospital social worker that she is not capable to care for herself "a danger to release alone". They can arrange a nursing home admittance and they can do hospice there. There will be medical support there and you can visit there. You are not obligated to take on her high medical needs at end of life alone.

[Dog]

I’m so sorry for the difficult situation you are dealing with. It takes a level head, big heart and internal strength. Your sister, niece and nephew are blessed that you are involved. My mother was also an alcoholic with other serious issues. Her last two two years were a series of visits to ER due to falls. Her final visit to ER ended up as her last week being spent in the hospital with support from hospice. My brother, sister and I rotated shifts so she wouldn’t be alone (we all lived locally). She was on Medicare, so the bills were covered. I’m not sure what your sister’s prognosis is, but I can’t imagine they would send her back home?

I wish you continued strength. You will have no regrets helping her through this difficult time.

[daylatedollarshort]

Quote:

Originally Posted by YakGrl I have been in this situation with a sister. If you do not volunteer to do 24/7 yourself, stress to the hospital social worker that she is not capable to care for herself "a danger to release alone". They can arrange a nursing home admittance and they can do hospice there. There will be medical support there and you can visit there. You are not obligated to take on her high medical needs at end of life alone.

+1. Our local hospital tried to release a medically unstable relative to my care, twice. The second time my nurse friend who worked at the hospital told me to simply refuse to accept the release, which I did. She said it was really a billing issue with the hospital and my relative was not ready to be released. The doctor was not a happy camper, but he kept my relative there until his condition stabilized. Before I talked to my nurse friend, the hospital sent him home to my care, he collapsed in front of our young kids and I had to call the rescue quad.

In this case what would the hospital do if Bigdawg was not around or refused to accept release to provide 24 X 7 free care? I assume the hospital would find a way to make other arrangements.

[aja8888]

Quote:

Originally Posted by daylatedollarshort +1. Our local hospital tried to release a medically unstable relative to my care, twice. The second time my nurse friend who worked at the hospital told me to simply refuse to accept the release, which I did. She said it was really a billing issue with the hospital and my relative was not ready to be released. The doctor was not a happy camper, but he kept my relative there until his condition stabilized. Before I talked to my nurse friend, the hospital sent him home to my care, he collapsed in front of our young kids and I had to call the rescue quad. In this case what would the hospital do if Bigdawg was not around or refused to accept release to provide 24 X 7 free care? I assume the hospital would find a way to make other arrangements.

They would probably send her to a Medicaid nursing home.

[Bigdawg]

Thanks for all of the comments and advice. Much appreciated.

Dialysis happened this morning. Cleaned the blood but did not remove fluid. I spoke with the kidney doctor about two hours ago. He was wondering why we were going this route. On Monday I am insisting on a meeting with the kidney, liver and palliative care doctors all at once to get the story straight. Basically no reason to be doing dialysis with no hope of double transplant (kidney and liver). I'll make sure the hospital knows that she has nowhere to go. Tomorrow being Sunday there won't be much happening.

Thanks for your understanding and comments/suggestions.

[LARS]

Quote:

Originally Posted by Bigdawg Thanks for all of the comments and advice. Much appreciated. Dialysis happened this morning. Cleaned the blood but did not remove fluid. I spoke with the kidney doctor about two hours ago. He was wondering why we were going this route. On Monday I am insisting on a meeting with the kidney, liver and palliative care doctors all at once to get the story straight. Basically no reason to be doing dialysis with no hope of double transplant (kidney and liver). I'll make sure the hospital knows that she has nowhere to go. Tomorrow being Sunday there won't be much happening. Thanks for your understanding and comments/suggestions.

No advice other than to say make sure you take care of yourself. So easy to overlook your own well-being when dealing with the maelstrom you find yourself in…

[NW-Bound]

Bigdawg, you are a good man. Your relatives are fortunate to have you.

Quote:

Originally Posted by Bigdawg Dialysis happened this morning. Cleaned the blood but did not remove fluid. I spoke with the kidney doctor about two hours ago. He was wondering why we were going this route. On Monday I am insisting on a meeting with the kidney, liver and palliative care doctors all at once to get the story straight. Basically no reason to be doing dialysis with no hope of double transplant (kidney and liver). I'll make sure the hospital knows that she has nowhere to go...

You said earlier your sister still has 10% kidney function. Does she pass any urine at all? My late father had total kidney failure, and his kidneys did not pass a drop of urine. He would have his face and body all bloated with fluid if he did not get it removed from his blood. They could take off a gallon worth each session. I imagine the patient would feel very lousy being so bloated. He eventually died when his liver also quit, but only after a few months of pure misery.

Dealing with end of life is very tough. Having seen enough relatives in the final days has given me a somber attitude about life.

[Scuba]

Quote:

Originally Posted by daylatedollarshort +1. Our local hospital tried to release a medically unstable relative to my care, twice. The second time my nurse friend who worked at the hospital told me to simply refuse to accept the release, which I did. She said it was really a billing issue with the hospital and my relative was not ready to be released. The doctor was not a happy camper, but he kept my relative there until his condition stabilized. Before I talked to my nurse friend, the hospital sent him home to my care, he collapsed in front of our young kids and I had to call the rescue quad. In this case what would the hospital do if Bigdawg was not around or refused to accept release to provide 24 X 7 free care? I assume the hospital would find a way to make other arrangements.

Agree 100% with this. Given her condition, it sounds as though she definitely needs to be in a hospice facility. She’s lucky to have your help, but that doesn’t mean you should give up your life to relocate there and become a hospice caregiver.

My sister died of complications from alcoholism last summer. It is a hard way to go and sadly, it sounds as though your sister does not have a good prognosis to survive. Take care of yourself as you generously help your family through this difficult time.

[LoisLane]

Some information to be aware of:

Even if your sister ends up receiving Medicaid, and even if Medicaid pays for hospice or nursing home care, the government can still opt to go after her estate to recoup the money that Medicaid paid for her care. Her children should not count on being able to keep everything from the sale of the house—-the government can clawback funds that Medicaid was entitled to. But for now, Medicaid should be able to pay for what she needs at the hospital and elsewhere, though, and at contracted, low Medicaid rates.

Bigdawg, could you get the house flea bombed and clean enough so that you could stay in there afterwards? That would keep your own costs down quite a lot.

[Bigdawg]

Quote:

Originally Posted by LoisLane Some information to be aware of: Even if your sister ends up receiving Medicaid, and even if Medicaid pays for hospice or nursing home care, the government can still opt to go after her estate to recoup the money that Medicaid paid for her care. Her children should not count on being able to keep everything from the sale of the house—-the government can clawback funds that Medicaid was entitled to. But for now, Medicaid should be able to pay for what she needs at the hospital and elsewhere, though, and at contracted, low Medicaid rates. Bigdawg, could you get the house flea bombed and clean enough so that you could stay in there afterwards? That would keep your own costs down quite a lot.

Thanks. I flea bombed the house this morning. Also the crawl space and me and my plumber buddy will fix a broken water pipe on Tuesday. Meeting with a lawyer tomorrow re: the car and house. I told nephew and niece to not expect anything. Dialysis scheduled for tomorrow has been pushed to Tuesday morning. Liver is basically gone. Saw my sister today in pain. She told nurse 10 out of 10. Pointing to her liver area. I will see the palliative care doctor tomorrow and push for hospice. I have decide to do everything in my power to NOT move here even for a few months. I have doctor appointments back home I need to get to along with a few other commitements. DW and I WILL go to Roaton on our dive trip the first week of September. Betting my sister will be gone by then. We'll see. Thank you all for the comments and suggestions. I'm good. Working out every day while I'm here.

[RobbieB]

I don't think she has much time left. Time for lots of Morphine.

[ivinsfan]

Such a tragic outcome for everyone. You might think you are good, but realistically how could you be good? You are getting all the feels from every direction. Take care of yourself and God Bless you and your sister.

[Sunset]

Quote:

Originally Posted by Bigdawg Thanks. I flea bombed the house this morning. Also the crawl space and me and my plumber buddy will fix a broken water pipe on Tuesday. Meeting with a lawyer tomorrow re: the car and house. I told nephew and niece to not expect anything. Dialysis scheduled for tomorrow has been pushed to Tuesday morning. Liver is basically gone. Saw my sister today in pain. She told nurse 10 out of 10. Pointing to her liver area. I will see the palliative care doctor tomorrow and push for hospice. I have decide to do everything in my power to NOT move here even for a few months. I have doctor appointments back home I need to get to along with a few other commitements. DW and I WILL go to Roaton on our dive trip the first week of September. Betting my sister will be gone by then. We'll see. Thank you all for the comments and suggestions. I'm good. Working out every day while I'm here.

Glad you are pushing for pallative care / hospice AND letting them know you live FAR away.
She needs to be in a nursing home / hospice facility if not the hospital.

Take care of yourself, you have already done a lot.

[daylatedollarshort]

Quote:

Originally Posted by Bigdawg I have decide to do everything in my power to NOT move here even for a few months. I have doctor appointments back home I need to get to along with a few other commitements.

It sounds like you are doing more than enough already without providing full-time hospice care, too. In another forum I am on, the hospital tried to get one of the members to accept release of her father and have her pay for in home therapy, and the hospital said they would rent her a hospital bed, wheel chair and a hoyser lift. The man couldn't even get out of bed on his own and they wanted the family presumably to quit their jobs to provide 24 X 7 skilled nursing care, and cover all the medical costs they were in no way legally required to pay for since he was a visiting relative from outside the country and not any dependent of theirs.

So even if they push for you to provide 24 X 7 hospice care, if it were me I would refuse to accept the release. Be emotionally prepared that it is possible they may try to make an unreasonable demands on you and make you feel guilty for not solving their Medicaid care patient problem for them.

[ugeauxgirl]

You are doing a great job with an awful situation. Prayers for you and your family.

[street]

What a tough time for you. I send my blessing to everyone involved and all will work out, just one day at a time.
Stay strong.

[f35phixer]

So sorry Bigdawg, tough times. Been through myself in another way but still a slow drip. Some day we’ll have to meet for lunch and see if we have met at pax sometime during out J.O.B. Time.

[EastWest Gal]

Quote:

Originally Posted by Bigdawg Dialysis scheduled for tomorrow has been pushed to Tuesday morning. Liver is basically gone. Saw my sister today in pain. She told nurse 10 out of 10. Pointing to her liver area. I will see the palliative care doctor tomorrow and push for hospice.

You are being a very good brother to help do what you can for your sister, niece, and nephew at this time. It is difficult for all of you, and the doctors too. What your sister has leaves few options.

It puzzles me is that there are the kidney and liver specialists, and a palliative care physician, but who in the hospital is coordinating her care? Who is considered her primary physician team in the hospital? I'm assuming there is a general medical team that has called in the specialists. Have you spoken with them? Acute care physicians can get distant when they feel there is nothing they can do.

Meet with the palliative care physician, specialists if you can, and talk with primary team. The palliative care physician will probably provide you with the best information and support. The focus of palliative care is overall quality of life, physical, emotional, spiritual. If she has hepatorenal syndrome due to cirrhosis, she is unfortunately unlikely to survive. Most pain medications have to be used with caution with kidney and liver failure. There is no easy solution to any of this, but focus on her comfort and pain management.

Neither you nor her children are responsible for her medical bills. Do not worry about estate recovery at this time. That occurs if she is on Medicaid, and several months after she is gone. That is a discussion for a much later date. Depending on her state, there may be none, or only for skilled nursing outside the hospital. Most states only go after the estate for skilled nursing care; only about 10 states try to recover all medical expenses, and they are last in line after all other bills are paid. If she makes it to discharge, and gets skilled nursing somewhere, that is what the state will most likely go after. Getting her on Medicaid can be financially helpful to your niece and nephew, as there may be something left of her estate. Otherwise, the hospital will claim a lot of it.

Focus on your sister, and what you all can or cannot do to help her now. Be there for her and your niece and nephew when you can. My thoughts are with you and your family today. I'm glad you are working out; taking care of yourself through all this is a high priority.

[wdwwildbill]

Prayers to your family ...

[Bigdawg]

Quote:

Originally Posted by ivinsfan Such a tragic outcome for everyone. You might think you are good, but realistically how could you be good? You are getting all the feels from every direction. Take care of yourself and God Bless you and your sister.

I'm good because I have an incredible DW at home. Totally independent and has my back. $ situation is good for me and DW. Sister did this to herself. I have survived mutiple combat tours so this is a piece of cake. Today I had to tell my 89 yr old mother that her daughter does not want to see her. Trust me, I DON'T want to deal with this. Basically the only person in the family that CAN deal with it. My contract ended the end of June. I'm on 5 weeks leave and 13 weeks serverance. Baseball (umpiring) just ended and volleyball picks up in a few weeks. Perfect timing for my sister to be in this situation. Care facility contacted me today. Not sure when she is moving there but it will be in the next few days. Couldn't see lawyer today. Have appointment for tomorrow morning. Might have to sell house and car, put in an escrow account to pay for sister's incidentals. Will have to give any extra (at the end) to the facility or medicaid. I am verifying all of this with the lawyer. Dialysis again in the morning. Betting she will be gassed tomorrow afternoon. I don't want her to give up, but she probably should. The writing is on the wall in large bold letters. Thank you all for the comments and suggestions. I'm good.