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I was told by my mother's doctor to come to see her immediately. She hasn’t been officially diagnosed with end stage liver disease but everything points in that direction. They said she had days to weeks to live and needed to go on hospice. She was receiving hospice services at the hospital until I figured out what I should do. I finally brought her to my own home for hospice. It is a terrible nightmare. She has been an alcoholic my entire life. She has Ascites and swelling in her feet and her cognitive abilities are questionable. She is refusing all medications now that she isn’t in the hospital. She eats very little and is incredibly weak. I don’t mind caring for her but I am nervous about her refusing medications. The doctors said she should take them but there isn’t a clear answer as to whether or not she HAS to take them. I don’t mind taking care of her but she is also difficult and I have to help her do most things which I don’t mind except that she wants to smoke a lot and I have to constantly stop what I am doing to take her outside. She can barely get to the bathroom on her own but will wobble and crawl to get outside and smoke. I’m not sure if I should bring her back to the hospital or if this is the natural course and I should let her do what she wants because her condition is considered terminal anyway.

You were told by your mother's doctor to come to see her immediately.

Why? As in, what for? Did you actually get in touch with the doctor to ask?
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Homecare123 Oct 3, 2020
They said she would be passing soon, so if I wanted to see her I should come right away. But then a month went by and I decided to bring her home. They were going to put her in a hospice/adult foster care facility.
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Just want to bring to everyones attention that if you go to a Hospice facility you will pay room and board. Some people cannot afford that.

https://www.medicare.gov/coverage/hospice-care

Your Mom can't be forced to do anything. If you take her back to the Hospital, she will be discharged from Hospice. Not sure if the Hospice facility room is paid by Medicare. Usually only the services are.

You need to call the Hospice Nurse with your concerns. She should be available to you 24/7. If not, find another Hospice.
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worriedinCali Oct 2, 2020
Medicare actually does pay if it’s short term & your link actually goes say that. So if the OPs mother is at the end of life & has days to live, Medicare will pay for inpatient hospice.
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My brother died with end stage liver disease. He went to an end of life hospice facility. It is the best place to be.

The nurses are incredible! The social worker was very helpful. If you are religious they provide clergy too.

He died peacefully. Best wishes to you. I’m so sorry that you are struggling with this. It’s hard.
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Sorry for what you are dealing with here and that your mom is failing. It is a LOT for one person to deal with. Can you get any additional assistance so you can have a break? Does mom have money that can be spent on hiring someone??

Taking her out for so many smoke breaks seems so draining. I mean, I understand she is on hospice but smoking is so bad for you! Was she able to smoke while at the hospital? I doubt it. Can you put her on a "schedule" for smoke breaks so she is not constantly asking you for them?

How long has she been home with you?
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NeedHelpWithMom Oct 1, 2020
Use a patch!
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Ascites means no appetite often enough. You are correct, that Mom is at the end. If her in home care is impossible for you you should tell Hospice this so they can arrange for institutionalized care. If you call ambulance for transit to hospital ER then make certain you tell them she is a hospice patient and you are not going for treatment but because you cannot safely manage her care. You should clear any transit to ER through hospice; I think they will prefer to get her transferred to in facility hospice care. Things will only get worse from here with this diagnosis.
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Homecare123 Oct 2, 2020
I feel so guilty to bring her to hospice.
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If in fact she is in the end stages of liver disease, then she probably isn't very hungry and will remain weak. You might want hospice to get you a bedside commode so your mom doesn't have to travel far to get to the bathroom, since it sounds like she's having trouble doing so. As far as her medications, have Hospice go over with you, which are necessary and which are not. The ones that are necessary, you can always crush up and put them in her food, ice cream or pudding. Also depending on what she's required to still take, they might could put a midline or picc line in her arm and the medications could be delivered that way too.
Remember too that you can always have mom placed in the Hospice facility near you, if needed instead of the hospital. She will get much better care in a hospice facility than you she ever will under home hospice care. Trust me I know. My husband was under home hospice care for 22 months(his choice, which I honored), but as you already know, 99.9% of your moms care falls on you. The nurse will come once a week,(more if absolutely needed) and an aide to bathe her 2 times a week.
And remember that hospice is not God. Only He knows when it's your moms time to leave this earth. I was told 4 different times in the 22 months my husband was under their care that the end was near, and he lived until Sept. 14th of this year. So hang tight. You might be in for a longer ride than you were anticipating, but try to enjoy any and all time you have left with her. May God bless you and keep you.
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Homecare123 Oct 2, 2020
This is definitely more than I thought. We left the hospital thinking she had only a few days. It seems being in a home environment is healing for her. Since she doesn’t eat I can’t really sneak in any medicine. She hates the bedside commode. I feel like a doormat. I give her what she wants because I feel bad. This is a very conflicting position. It doesn’t help that we never had a good relationship. Her alcoholism just put too much strain on every interaction my entire life.
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