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My mom was in AL at a place for 4 months and had ascites real bad. She was being transported to the hospital often to get paracentisis. So I started looking for a better AL that offered better nursing care and luckily found one. She was there for well over a year and doing very well until last November when the ascites started again and the nurses kept sending her out to the hospital to get paracentisis. In a 2 month period she'd been to the hospital 5 times.
So then in late November she was unresponsive in her room and got sent to the ER. Turns out she had extremely high levels of ammonia and other bacteria in her blood. It was obvious that her cirrhosis was getting bad probably the worst it has been thus far. She was on serious antibiotics for 2 weeks in the hospital and got much better so the doctors were preparing to release her. The AL said she could not come back there because her care level had gotten to high for them and they did not allow hospice. Also, the 4 doctors that were helping her at the hospital recommended hospice. The best option we had was the SNF right across the way from her AL. She could be on hospice there and get the care she needed so that's the option we went with.
So that was in late November and here we are in late March. She has basically rebounded again and really wants to go back to AL. I contacted her old AL and they said she lost her spot and the Medicaid waiting list is 3 years. That's out so now we are looking for a new AL that accepts Medicaid and I would also like if they accepted hospice as well because I think the next downfall might be the end and I am exhausted from moving her around so much. I have been caregiving for her since March of 2023 and this has easily been the most stressful time I have ever gone through. Having a full time job and a side business make it even harder! Thanks for listening

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"they said she lost her spot and the Medicaid waiting list is 3 years"

This may mean that in your State u have to pay privately at the same AL for at least 3 years before Medicaid will pay. Then, its depends on if the AL has a Medicaid bed open. ALs usually only allow a % of residents on Medicaid and the residents already living there would trump a new one coming in. And some require that you share a room. Medicaid does not pay for private rooms.

I think Mom needs to stay where she is.
Reason one, looks like she can't afford an AL now and you should not pay for it.

Reason 2, she needs more care than an AL can give her. You can call around but you may find that an AL will not take her. Assisted Living is just that, they assist. Your Mom needs skilled nursing which ALs are not equipped for. This is now her reality. She is too sick for an AL.

Your only other option is to bring her to your home on hospice and care for her there. Hospice is not there 24/7 so you will have to do most of the work or hire aides.
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Reply to JoAnn29
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Whatever happy was for mom is likely over, you trying so hard to find a place to make her happy is not going to produce the results you both are hoping for. Highly doubtful of any AL accepting a hospice patient, just hospice means a life limiting condition, that’s outside the scope of AL. Limit the time you listen to mom’s complaints, they aren’t productive to either of you. Act as her advocate where she is, and make peace with the coming time. I wish you both peace
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Reply to Daughterof1930
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Assisted Living is not a nursing facility, and with ESLD, your mother belongs in a nursing facility. I would have it no other way, since mom needs medical treatment and hospice as well. Keep her where she will have what she needs. Needs must override wants at this stage of disease, unfortunately. And it will be less stressful for you, knowing she's in more qualified hands and also has hospice on board to keep her comfortable.

Good luck.
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Grayback Mar 31, 2025
I felt that way very much for the first few months but she just seems to be holding solid. She is constantly complaining about the place and is very unhappy there. My wife, who is a "by the book" type even thinks she doesn't belong in there right now.
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Wow, Grayback, what a long and involved journey for you and for your Mom. I am so sorry. It looks like right now there is no specific question you need help with and I admire how well you are handling all this. I think, if your Mom wishes it, this is a good time for Hospice to be certain, or at the least palliative care. I don't know--you don't say--where Mom is in her own head with this being really near end of life with any quality at all. Are you able to discuss this with her?
I sure wish you luck.
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Grayback Mar 31, 2025
In my mom's head she is fine and does not need to be in this "jail" which she calls it. She is completely miserable there and just wants out. She says the food is terrible as well. She hates having roommates.

My thought on getting her to an AL that accepts hospice is that the next time she takes a downturn she can just go back to the AL and get on hospice. Or if the AL has an attached SNF they could just transfer her there. The bottom line is that I don't want to have to move her again when she goes downhill.
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I've never heard of an assisted living facility not allowing hospice, and since you seem to be "exhausted" from all of this with your mom, why can't you just leave her where she's at, since the odds are that she will take a down turn in the near future anyway?
I think I would just leave well enough alone, and quit stressing.
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