Sorry this post is so long. I just found this website and could really use some advice about what to do. Here is the situation:
Almost a year ago, mom was moved kind of suddenly to a skilled nursing facility because my family could not longer afford to care for her at home, and our house was foreclosed and auctioned. Things were not great with the first skilled nursing facility, and we had her on the waiting list for a better nursing home (for over 8 months now!). We decided in consultation with the first nursing home that she just needed more one-on-one care, since her symptoms are so unpredictable. We tried moving her to a group home type setting with 24 hour care, and that was immediately a disaster. She was asked to leave because her care needs were too much, as were her unpredictable symptoms. She was taken to the hospital, and has been there for over a week waiting to be discharged to a nursing home. None of the nursing home in the area will take her now because she has "behavioral issues" -- most of which are related to her having really unpredictable symptoms, I think. I'm not really sure what is meant by the behavioral issues so I asked the doctor at the hospital about it, and she basically said that my mom seems to be okay when no one is in the room, and then becomes rigid and stiff when they are there, and unable to move. The implication was that she is not really physically sick with the parkinson's-like symptoms, and that this is psychological. She has been diagnosed with the PD / parkinson's like symptoms (doctors disagree on which she has) for 15 years! And now they are acting like she has all these behavioral problems. This is not what my family has observed with her, her symptoms come on suddenly and randomly, and she has a lot of pain. When I brought this up with the hospital doctor, she said that they had to go based on what THEY had observed. I know there is probably a grain of truth to the behavior thing -- but that has NOT the main issue with her care by a long shot.
The situation is making me physically sick to deal with. I am a grad student living on the other side of the country, but I have been able to come here briefly have been visiting my mom the last few days in the hospital. My dad has been with her as well, but he is not very good at communicating with doctors and social workers. The hospital has recommended that we take her home, but I have repeatedly explained to them that there is no home left that we could take her to. Even if we could cram her into the trailer where my dad lives or my sister's studio apartment, it would be an immediate problem because she does need a very high level of care at this point.
I don't know what to do about this situation, and I don't know what to do to take care of myself, I feel like I have rally lost the ability to do that over the last week. I have to go back to work/school in mid-January, and I was also planning to be with my boyfriend in a few days. My mom says I should still go to be with my boyfriend -- I can come back after Christmas -- but I am getting terrified that the hospital is going to kick her out with nowhere to go. They are obviously angry that she is there in the first place, and the nurse is not being very understanding about her condition, and keeps putting her positions that cause her a lot of back pain. It is really starting to traumatize me. This last year has been awful for me and my family, and at this point I feel nauseous all the time. I want to just go see my boyfriend and hope that things are better when I come back, or at least try to get myself together a little more. My sisters are both married and both live in the area. But they have been less involved recently -- my younger sister is taking care of her newborn baby; my older sister is just really struggling with the stress of all this and isn't willing to be too involved anymore. For the last year, literally every day has been an emergency with mom's living situation or care. It just seems to take so much effort to get anyone to understand mom's condition, and I don't know if ANY of us can handle it anymore. We are all pretty young (mom is only 56), and I think that has been an extra issue.