He gets $1200/mo and does not get Medicaid or food stamps. He is in late stage dementia and under my care 24 hours/day. My siblings have refused to meet with palliative care nurses since last October and our Dad has no POA or advance directives to proceed with his care
My mother had no POA in place and did not have an advance directive. Of course we tried to convince her to do those documents, but she didn't. We had no problems proceeding with her care. We would have preferred a written document, but we were pretty confident we understood her attitudes about medical procedures.
If Dad is on palliative care, I imagine the next step is hospice. Is there any reason not to proceed with that?
You mention his finances. Is that a problem area for you? Does he pay you for room and board and/or caregiving? Does he have a will?
Your dad should be paying you at least his $1,200 monthly income for board, room and care (and a lot more from his savings, if he has any), but it should be via a signed and notarized contract that details the care that his doctor says he needs and that you are providing. Check with your state's Medicaid office to make sure your contract is in compliance with its 5-year financial look-back rules so that your dad won't be penalized should he eventually need Medicaid assistance to live in a memory care or skilled nursing facility. You may intend to always take care of him, but there is a reasonable probability that there will come a time that his care and your health will both benefit by him moving to a good care facility that is close enough for you to visit frequently. You shouldn't feel guilty about him paying you and by having him do that you'll have more financial resources you can then use to supplement his comfort in a likely future stay in some kind of facility and to use for a possible guardianship filing should that become necessary due to your siblings suddenly regaining interest in your dad's health care and finances and if their new interest is malicious rather than helpful.
I know it hurts a lot to see your siblings abandoning your father. It is lonely and painful to be responsible for all your dad's care. Are you able to talk to a social worker and see what other options are available?
I know you are doing the best you can for your dad. But I know I was also resentful and angry with my siblings for not doing their share. I tried shaming and being angry but nothing could get them to pull their weight in my eyes. If you are feeling burnt out, please consider talking to family therapist or joining a support group.
Thinking of you.
You're in a tough spot in wanting palliative care for your dad, but without having his POA and having siblings who aren't interested. Guardianship may be your only option to get the authority you need to request palliative care. (And guardianship courts can act very quickly when there is an emergency.) Usually I suggest trying to have a family meeting before seeking guardianship, but you've been trying to get your siblings to agree to this for a long time, so a meeting looks doubtful. Your dad's income and savings can be used to pay for guardianship, but if those are low enough he may qualify for free legal assistance from Legal Aid. Here's its website: http://www.legalaidnc.org/get-help/our-services
Also, in my first reply, I meant to only suggest, rather than say that you "should," have your dad pay you and primarily so you would have more financial resources that you could use later for your dad's enhanced comfort if he eventually moves to a care facility with Medicaid financial assistance. For example, Medicaid typically doesn't pay for a private room, but most care facilities will allow a family member to pay the additional cost for such. Looking ahead to a possible need for Medicaid, I thought about charging my dad while I was providing his care in my home, but didn't do that due to sibling issues, and it ended up not mattering because I moved my dad to the best memory care facility I could find and it does not accept Medicaid. I don't know how old your dad is or whether his dementia is progressing slowly or rapidly, but if he's like my 96-year-old dad, he could survive many more years and you may find, like I did, that without sibling assistance, the lack of sleep, let alone lack of having any other normalcy of life, will take its toll. Best wishes.