As I last resort, I am turning to this forum for help. My sister had Leukemia when she was young (age 2-10). She went into remission. She has always been heavy (And at the start of this story 299 pounds). They found out about 15 yrs ago that she had about 6 slow growing non-cancerous meningioma tumors in her spine and 5 in her head. The doctor all said if she tried to have them removed, she would be a vegetable.
She had a paralysis episode in March of this year (2017), which caused and ER visit. The tumors had all grown. The most serious was completely blocking her spinal canal and the second largest was in her head in the back. On March 16, we removed the one in her spinal canal and she survived. She went to a care center and was able to walk, but still with her walker that she had before. Then a second surgery was needed for a spinal fluid leak (plus she had a UTI). Surgery was a success. But then she wasn't healing properly and a 3rd surgery was needed to clean it up. Then she had one seizure and they put her on seizure meds. She was put in a long-term rehab center. She started having eating issues, saying she was hungry, but not eating on some meals. And other times saying she felt like something was in the way in the back of her throat (This was going on through August). Then in May she had a UTI and they sent her to UC Davis in Sacramento. She was there for about 2 weeks and then back to the care center. In June she had numerous trips to the ER for UTI's, high potassium, high sodium (all on different trips). Then in July she had 2 seizures at the care center. She was admitted to the hospital and they upped her dosage of seizure meds. The next days she had 4 more seizures (all seizures were grand maul). Mentally she is a little off. Still not herself and losing weight. Come to find out, sometime between all the trips to hospitals and care centers from the time they started her on the seizure meds to July, the neurologist found out someone had decreased her meds from 1500mg total in a day to 500 total in a day. In August she had an endoscopy to see why she was having problems swallowing food and to see if something was blocking the way. Her Shotski ring had almost closed. They stretched the esophagus, so that it was open much more for her to swallow. So here we are in October 2017, she hasn't walked since April. Refuses or says she doesn't feel well, so they have her in the system as a refusal patient. She is not eating anything and only drinking water. Her weight now is 186 pounds. Losing over 100 pounds since March and now she's not eating anything. In researching on the internet, a body can only survive on water alone for 4-6 weeks.
I have a call in to the doctor (who is the care center's doctor and is only there like twice a week), to ask him a ton of questions, but thought I would put this out there and see if anyone has ideas. I've tried bringing food to her and she spits it up and throws up. She refuses the food the care center gives her. Says it's awful, which some dishes do look awful. Her taste buds are also pretty much gone because of her meds.
I'm trying to do everything I can as her sister and POA, but running out of ideas. I feel like she is either giving up OR she mentally doesn't know what's truly happening. Most of the time she seems normal, but other times her memory loss and her being mean is a side or her that she wouldn't normally have.
Is there somewhere other than a care center which will take a refusing patient here in CA who is on MediCal? Is hospice something I should look into at this point?
Any other websites that might be helpful?