My mom (56) has liver failure and alcoholic dementia and is on hospice. I've been taking care of her since August, in the beginning she was doing well and transplant looked like an option. She transferred her house to me with a life estate then at the advice of a lawyer who said it wouldn't hurt anything. Now she doesn't qualify for nursing home care until June—but her condition has gotten so bad that there's no way I can keep her here until then—it's no longer manageable for me or safe for her. Returning the house or private pay are not options because of the mess I've put myself in in order to be here. I'm working with legal aid and the hospice social worker but I was wondering if any of you had any advice about things to do/people to talk to in order to try and get something to happen faster. (I do not have POA or guardianship, if that changes things? It sort of sounded like it might in some posts I've read.)
I moved back from Arkansas to Virginia to help take care of her, at the time thinking she needed help recovering from a bad state of hepatic encephalopathy and a long hospital stay, and that she would continue to need help after transplant until she was healed. She was completely herself for about a month and a half and then like a lightswitch there was the confusion. She was put on hospice in December, and in the last couple of weeks things have escalated to an untenable level. She's completely incontinent now, and because of the lactulose it's all diarrhea so even with pull-ups and pads I end up doing 5+ loads of laundry daily. I also frequently find it necessary to put my arm around her legs and try to lift her with one arm and move pads/put on pull-ups because she's laying on the couch or the edge of her hospital bed where there isn't enough room to turn her. She was getting violent before a recent Ativan prescription which has helped with that some. She no longer supports herself when she walks and must be held up, as well as physically pulled away from objects/walls/doorjambs that she grabs and refuses to move from (she will stand there until her legs give out completely). They brought her a wheelchair yesterday but I spent 4 hours on and off trying to get her into it unsuccessfully last night until I finally managed at 4am. Now she doesn't manage to get up properly most of the time (she'll try to stand and fall back onto the bed/couch), but I get very little sleep from her wanting to get up in the night/having to change her in the night, even with the Ativan. She fell again last night. (I use a bed alarm but forgot to plug it back in after changing her.) She hadn't had any for awhile (think Ativan has helped with that too), before that she had 4 in 5 days when she was more agitated/roaming. Two of those she hit her head. Now she seems really prone to aspirating, even with stuff like pudding (I grind and put her pills in there).
I've put myself in credit card debt (almost all maxed out now) and a bad career situation to be here. She is on disability and gets a small retirement check from my dad but it's not enough, and I've been completely unable to work because of this. I missed out on a competitive opportunity this month because I was here. I also have 100k in student loans I'm not paying because I'm here. When she does pass I'll have to live here awhile to build my resume again and I'll need something to help me move (not a lot of art professor job opportunities in rural Virginia) and get back on my feet. I can't go into further debt or lose the house.
I am physically and mentally exhausted. This is too much for one person, and I have almost no help from family. The one who was helping most can't now because she's not physically able to handle her. Any advice would be deeply appreciated. I'm at the end of my rope.