The short:
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.)
The long:
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.
As for your own health care, since you have no income you should qualify for expanded medicaid unless you are unfortunate enough to be in a state that has rejected it. You can apply for expanded medicaid at any time. There is no open season.
A poa would allow you to handle your mother's financial affairs. Our state has a general poa form which only requires witnesses or to be notarized.
With the poa, you can have access to your mother's accounts. If not done already automate fixed expenses. You might be able to save some money and lower some bills (senior discounts) or eliminate.
If you have no income at this point, what are you doing about health insurance? You may need to apply for social services yourself for this time period. Even a food allowance may be helpful.
With regards to your bills, can you apply for a credit card with 0% interest and transfer your current balance? Can you defer your student loan for six months due to unemployment and illness in family?
How will you cover property tax and insurance after your mother passes away? I don't like the idea of reverse mortgages but is this something you might need at this point.
But I'm going to keep following up on the Undue Hardship Waiver--I'll have to go sign paperwork one day while she's in and I'm going to talk to the nursing home social worker (because it looks like a nursing home can help with that if they want to) as well. I've already reached out to the hospice social worker and legal aid about it.
I don't have insurance, I need to try to apply at some point if I ever get a second. I don't think it'll happen this time because almost every minute of the respite stay is already spoken for in terms of things that have to happen while she's not in the house :\ there's really more to do than can be accomplished in 5 days.
I spoke with legal aid about POA, and she said that mom had to be clear in order to sign it. She said the only option with her being unclear was to pursue guardianship, which would be expensive and time consuming. What do you mean automate to save money? She's not a senior though, she's only 56, she's so young to be going through this.
Unfortunately I don't think anyone would give me another credit card, I have good credit, but the 0 income is a problem there. I do already have deferment, I apologize for the confusion there I wasn't clear enough--I brought it up in order to explain that I couldn't go into even more debt at this point.
From my understanding I'll just have to take over normal taxes when she passes, at which point I'll be able to get at least some kind of job so I should be able to manage somehow.
Thank you for taking the time to answer and try to help, I really appreciate it.
Tothill, OPs mom is on hospice since December per the post and unfortunately they don’t provide much in the form of caregiving. They provide home health aids who will come out and bathe the patient and change bedding and maybe do light cleaning in the immediate area where mom stays (that’s been my experience with it). Medicare will not pay for room & board at a nursing home, even for hospice patients. The exception is for people who are at the end of life with not much time. It may have changed but at one time medicare would pay for 2 weeks in a hospice facility and you had to be at the very end of life. One thing OP could do is get mom places in a facility for respite, since mom is on hospice she should be entitled to 5 days respite in a LTC facility.
First I want to acknowledge that you have every right to be exhausted. And when a person is under the amount of stress you are in, it is almost impossible to see your options.
I am not in the US, so I cannot offer any advice on the legal ramifications of the house transfer, nor how to pay for nursing home care.
I do not see any mention of Hospice in your post. Have you talked to Mum's doctor about that? I believe Hospice services may be able to provide some help to you and Mum.
My background is in Financial Planning. Keeping in mind that I do not know the rules and regulations in the US, I suggest you look into:
What is the value of the house?
Are there any Tax consequences from Mum putting it into your name?
If you sell the house, would there be enough funds to pay for a nursing home for Mum now?
I know you said you do not want to sell the house, but if that is what it takes to get Mum into care now, you may need to sell it.
Where would you live? Is there low cost rental available in that community? Or a shelter. How much would it cost you to move to a place where you can restart your career?
Have you contacted your student loans holders to tell them you current situation? It generally is better to be in touch with creditors, than ignore them.
Have you talked to a bankruptcy trustee to find out what your options are regarding your debts?
I am so sorry you are dealing with this.
I think the house is valued at around $70,000. I don't think there are any tax consequences, as far as I understand I will simply take over paying taxes when she passes, at which point I'll be able to get some kind of job (even though it probably won't be in my field for awhile unless I just get lucky) so it will be doable.
I do have a deferment as I don't have a job (what I meant was that will have to be dealt with at some point and I can't accrue even more debt), and I don't need to go into bankruptcy as none of my bills are going unpaid. I apologize for confusion there--in my mind the current financial situation is less of a big deal than the daily concerns and what happens going forward. She has medical bills and a cable bill that have been sent to collections that I'm not worrying about, but otherwise we've managed to stay above water just barely in terms of bills. What has been very difficult are other things--household supplies, boost and ensure for her (because it's so ridiculously expensive and she can't eat solid food at all now and doesn't do well with blended protein powders), vet care that has gone undone, my own medical concerns that have gone undone, an oil change that's way past due, etc, etc.
Mom and dad both wanted me to have this house, and I need somewhere to live and a way to get my life back on track after she passes. I have four animals, and will not make myself homeless over this situation. I've already given up so much to be here and I did that because I love my mom and want what's best for her. The unfortunate truth is she doesn't have long left, the problem is right now not long for *her* and not long for *me* (when every day is a struggle) are two different things. I'm trying to find a way to help her that doesn't further jeopardize my own future. I am looking into the Undue Hardship Waiver now.
Thank you again for trying though, I really do appreciate it.