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Hi, my grandma has cirrhosis of her liver and about a week ago she ended up getting sepsis because of ascites that created a sore in her leg. She was able to make it through, but we had a family meeting and decided that hospice care was the best decision for her right now. The lady that talked to us said that my grandma would stay at the hospital until they helped improve her condition as best they could. They talked about helping her be able to walk on her own again, eat properly, and help her memory, then after she would come home and be on hospice. Well the very next day after the meeting, they just sent her home. She did not receive any kind of therapy and it seems like the longer she is here, the worse she is getting. Right now she is experiencing shortness of breath and we are having a really hard time changing her diaper. She also is losing interest in any food, while she was eating great at the hospital. Is there anything we could be doing to help her? Is it possible she may need to be back in the hospital? Thanks for any advice.

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cHansen; (((((hugs)))) to you and gma.

It's so hard to let go of those we love; I know.

When my mom was on hospice and getting morphine to deal with breathing issues and pain, my sil asked her nurse "why is she not responding to us?"

The nurse said, quietly and simply "she's travelling now".

It was the most profound and comforting thought.
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Sorry I didn’t understand that she was on hospice when discharged.
I am also sorry she is back in the hospital with pneumonia. Did your family discontinue Hospice? I say this as I don’t think that Medicare will pay for both but I could be wrong.
Did someone from your family call the hospice staff and they recommended hospitalization?

They probably discharged your grandma home prior to this hospitalization because unfortunately there is nothing more that they can do especially if Grandma can’t participate due to her illness.

That said, hospice is not 24/7 care unless the person is admitted to a hospice center. You will only see a RN maybe once a week and an aide to assist with bathing if on hospice at home.

While grandma is in the hospital inquire if a free standing hospice or a hospital unit dedicated to only hospice. Think about admitting gm if you and your family were having trouble changing her depends, etc.
If on hospice at home, the family provides 98% of the direct hands on patient care.
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chansen Mar 24, 2019
She has become unresponsive because of the morphine they are giving her so she is no longer eating or taking her other meds. So I guess she is passing soon. :( I love her so much, its going to be really hard to cope. I know she will no longer be in pain, but she loved being alive so much and would cry and tell me how much she will miss the world when she's gone. Poor grandma. <3
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Chansen, I'm so sorry about this turn of events. Stay in touch.

DO NOT allow gma to be released without a firm hospice plan in place and a comfort kit of meds and instructions how to use them.
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chansen Mar 26, 2019
So my grandma is experiencing edema from her cirrhosis and anytime someone moves her to re-position her in bed, she cries out in pain. Can edema really cause that much pain or could it be something else? Her arm hurts her real bad when they do a blood pressure test and her legs hurt when they go to change her. She actually cried today when they were moving her...
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So no one has contacted your family re Hospice? If not maybe the transfer wasn’t complete when GM went home. Review your GM’s discharge instructions as usually a synopsis of who to call or who had been contacted will be on those papers. Who was there at discharge to take her home? Usually DC instructions are reviewed by a RN before a patient leaves the hospital. That should be their policy, anyway.

Please realize that GM is very ill and she may not be strong enough for PT with a distended belly from end stage cirrhosis and her recent episode of sepsis. She may not be able to do PT but she and the family can be taught how to get her up and in a chair for a while. Is she on oxygen yet?

Due to the build up of toxins in the bloodstream due to liver disease GM may also be confused which is why she is forgetting things she should be able to do.

As far as PT, you can help your GM by doing passive/active range of motion or isotonic exercises in bed. Google these exercises. They are gentle.

She needs hospice. If her hospital discharge paperwork doesn’t give directions or of you don’t see a phone number to call. I would then page her PCP or call them when their office opens to get them to send an order for Hospice.

Good luck
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chansen Mar 23, 2019
Sorry for the confusion, she did get the hospice at home. They barely came and talked to us yesterday and now my grandma is in the hospital with an pneumonia.
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She may be confused, and perhaps she doesn't understand what the fuss is regarding a diaper.
My dealings with hospice was they came in to check vitals, and a person would come in every other day to clean her. They were there for me if I needed to call and talk with someone. Hospice will check on her. They may have some great plans up their sleeves to help GM get nutrition and making sure she has clean diapers on.
Have you tried her music and dance with her? Give her treats that you know she likes.Maybe try a different diversion when you change her diaper. Try playing her songs, and try doing this while she is laying down...
Hospitals have a way of releasing elder people quickly, sometimes too quickly.

Make sure that hospice is on board, if not, talk to her doctor immediately. They will evaluate her. Palliative care is between doctor visits and hospice. They will come see patients maybe once or twice a month...Ask doctor about both.
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Chansen
Are hospice nurses coming to see your GM? If so have you asked them these questions? Your GM should be kept comfortable. It seems like there was a disconnect between the hospital rep and hospice.
If you have a hospice coming in you should call them now for guidance. If you don’t have hospice then yes I would take her back to the hospital. Don’t let her suffer. There is no need for that.
I am really sorry for her condition.
edit: I’m sorry I didn’t see the other answers. I don’t understand the hospice allowing her to be in pain if that is the case. Hopefully the pill has helped.
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What happened to the plan made at the hospital? She CAN get PT on hospice.
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In the morning, if you haven't called 911, get in touch with the hospice organization and ask for them to evaluate GMA so she can be accepted for hospice care at home.

I'm not sure why someone in the family accepted discharge without hospice being in place. It sounds as though there was a major communication breakdown somewhere.

Please let us know how things are going. We care!
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Is GMA actually ON hospice? Call the 24 hour hospice number.

If not, if GMA is short of breath, call 911.
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