I chose home hospice for mom after her last hospital visit for COPD included a 30hr acute steroid induced psychosis. I had it set up for her to go to rehab, and from there was planning to have her stay in the nursing home, but I chickened out. She was so confused, and having been in restraints for so long, was sure "they" were trying to kill her. Hospice said they would cover her for the COPD, but her Medicare benefit remained in effect for the CHF, GI bleed....on and on. Her list of ailments is long, and in the past year we've been in the hospital over ten wks total. I told the hospice inception nurse my main concern was advanced undiagnosed dementia. Yes it's my fault three years in its undiagnosed, but she wouldn't see the neurologist for the first two, and the last year we kept missing appointments due to hospitizations. I tried to get a consult in house, which never worked out. I chose home hospice because they said she could still get care for any condition other than COPD, this proved patiently untrue. Even though the social worker has called the neurologist office to explain how to bill, they refuse. I have called various other doctors, they refuse. Three years into caregiving, and three months into home hospice, I am at the end of my rope. Hospice offers respite care, but mom says no so my hands are tied. I was also told she could easily come on and off hospice, but as she is on O2 24 hrs a day, that turned out to be just another false selling point. A year ago I would have been on the phone to CMS, the state insurance ombudsman, the TV news, anything to undo this situation. But I am alone, physically and mentally exhausted, and spiritually bankrupt. A parent who had been riddled with fear and anxiety for a lifetime gets even more so with dementia. And a parent who has been emotionally abusive does not lose that skill just because they wake in the middle of the night and don't know their own bedroom or daughter. All the rules in place to protect seniors right are well intentioned,but as far as I can tell, no one protects me. The only light I can see at the end of the tunnel is a half full bottle of xanax. I can just go to sleep and let the state deal with her.