He is in a nursing home and on Medicaid Disability. Before anyone accuses me of trying to bilk the system, he is young and developed terminal glioblastoma right after starting a new job. Do I need to give that money to the nursing home? I am trying to use the money to take him out of there and move temporarily into a handicapped accessible apartment (I will provide his care) until I am not able to provide his care any longer (if that happens). I have also made arrangements to transfer him to a different facility once he requires hospice using his SSDI if that becomes necessary.
My brother remained lucid pretty much right up until his final month (which he spent in a hospice facility) so assuming your boyfriend is also competent he needs to take steps to get his affairs in order, that means visiting a lawyer and appointing you his POA and healthcare proxy if those are his wishes. As for caring for him outside of a facility - it's going to come down to what you can realistically afford, not only will his income be reduced but if you give up work to become his caregiver yours will also, so getting by could be very tight economically.
(F**k cancer)
Of course, if you want to take care of him yourself in an apartment that's an option too.
The nursing home is going to come after you for the money though. Talk to a lawyer.
I’m so sorry you’re dealing with this.
I just looked up glioblastoma and it is a heartbreaking diagnosis. You both have a lot to face in the future. You will find support here but I also hope you can find support locally.
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right now what is his classification and timeline at the NH? By that I mean is when did he enter the NH as a discharge from the hospital? AND is he there as a rehabilitation patient OR as a custodial care resident? The answer on this will matter big time as to his having to use his SSDI income for his Share of Cost that the LTC Medicaid program requires.
Has anyone spoken to you regarding “SOC”? Or is this all oh so new that it’s all a blur?
If you have not looked into support group for gliloblastoma, please pls do so. They will be invaluable for you in this difficult path.
If you do not have POA its going to be hard to handle his finances. He can take some of that retro and set up a prepaid funeral. You should not be co-mingling your finances. His payment should be going to a separate account. Eventually, he may need to allow NH to be payee. Even if your his POA, you do not have rights to his money for personal reasons. Social Security does not recognize POA so you would need to be payee and even then, the SSD payment goes to the NH.
Terminal glioblastoma is very serious. He was placed in care for a reason. If you are able to take him out of there, do you plan on living off his SSD? I doubt if you will be able to work. You need to look at the whole picture here. Be realistic. What is his survival rate. What will his symptoms be like. Are you going to be able to care for him 24 /7 without help. Besides rent, there are utilities, groceries, transportation. You need health insurance too, can u get it as a Caregiver? These are things you need to consider now. As a girlfriend you have no rights. Without POA, unless BF has signed a HIPPA form, you are not even privy to his health info.
My heart goes out to both of you. I have a dear friend who has this. We are devastated watching her decline so quickly.
Others are correct in that if is capable now, he will eventually require a legal advocate that he assigns. If he doesn't put hit in place he will become a ward of 3rd party guardian.
Make sure if he has a good relationship with his family that you are in communciation with them with what you are doing. I have adult sons (late 20s to mid 30s). I'm not sure I'd want a GF to be managing things but it would depend on how long they've been together and whether I felt she knew what she was in for in committing to hands-on in-home care.
I'm so sorry you are all going through this terribly stressful experience.
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