My Uncle is terminally ill and the system is not giving us options of how to care for him.

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My Uncle has been diagnosed with a brain tumor. He has impaired sight, he can't walk on his own, and he is currently in a rehab facility. The rehab is from the open biopsy and not from the treatment. His "Case Worker" is being very difficult, he's trying to push to get him released to my parents, but my parents are in no condition to care for him, they are both in there late 70's and are also no healthy. The case worker also says he is not eligible for Medicare, although after checking my self, I found he is within a few thousand dollars of the poverty limit, and therefor can pay that difference and receive Medicare. He's mot yet sure if he wants to receive treatment, because the doctors say it will not cure the cancer. What I am trying to find out is, what options does he have, if the rehab facility releases him, is there some kind of short term care facility that he might be eligible for. He does not currently have a home, (he has a trailer upstate that is un - livable) and as I said, my parents (one of whom also has cancer) simply are not able to care for him.
I really feel like the bureaucracy is failing, not only to caer for him, but to communicate the options we have as a family to balance our resources and capabilities with his.
Any help would be greatly appreciated.

Thanks

5 Comments

@Dereck. I am sorry to hear about your Uncle. Have you contacted Hospice in your area to see if they can go over to the place he is and give him an assessment. I don't know why some of these places bounce these things all over. Sorry I have to vent a bit here as I hear you how this is distressing. Is he terminally ill? Is he applying for SS Disability? I will come back to see your answers and try to help you on this. I would definitely call Hospice as your parents can not tend to him. You are right to speak up about this. I am praying for you and your Uncle. Hugs.
I am back. If the doctor says his cancer is not curable please call Hospice to see if you can get him in a Hospice Home in your area. He will need 24 hour care. My heart aches from reading this. Another suggestion is talk to the case workers supervisor and see what is going on with his case. People should treat others with more respect when it comes to these types of terminally ill patients. That is my opinion at least. Also see what others here can offer you in guidance. This is a great group of caring people on this site.
Crystal, thank you very much for your reply, They have said it is incurable, but the Doctors won't give a hard number on how long he has to live, The people in the rehab were saying that he is not ill enough yet for hospice, which seems really strange and counter - intuitive to me. They already spoke to the supervisor, he is even more uncooperative than the case worker. We tried to call around to several hospice centers in the area, but it seems they are all full at the moment. Part of the problem is that this is a rehab center and not the hospital, they transfered him after two weeks of being in the hospital proper. The hospital was very helpful, but now that they transferred him, they have washed their hands of the issue, and the Rehab facility priority is to get people out as quickly as possible. I will try hospice again, thanks again for the info
Dereck, yes contact Hospice again. Get an evaluation and perhaps at least get Uncle's name on a waiting list. At the very least you will be dealing with people who will treat you with respect and compassion.

Start the Medicaid application process. My husband's income was over the limit, but that just meant we had a monthly spend down -- kind of like a deductible each month. If the case worker isn't knowledgeable about the Medicaid qualifications he/she should refer you to someone else and not give out misleading information.

I'm sorry that the case worker isn't more helpful. That should be a good source of support for you. In the absence of support there I think I would call the Social Services department in your Uncle's county and ask for a needs assessment. In our case the worker who responded knew not only what was available in the county but was also familiar with state and federal programs and got me started down the right paths. I suspect in your uncle's case they would be looking at some kind of care center placement. Be very firm with everyone you talk to that he has no family he can live with.

My heart goes out to you. It is certainly traumatic enough to have a loved one with a terminal condition, and to have to deal with apparently uncaring bureaucracy on top of it is crushing. I tell you from experience that there are really good, caring professionals out there, too. I hope you find some of those kind very soon!
I agree. A good Hospice provider will not only take care of your uncle, but help you find the right answers.

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