Looking for some advice - I have been caring for a beautiful and wonderful gal who has Down syndrome for over 6 years. She was not doing well and we found out we had been exposed to Covid-19 so we went to the hospital in Neligh at the beginning of December. We both tested positive and were admitted. Being her the person who has been with her 24/7 for the past 6 years I know everything about her, how to help her eat, drink, you name it. She was being assisted with eating by hospital staff who were just trying to do their jobs but she aspirated, they determined she was unable to safely eat and put her on hospice - confused about how she could be put on hospice without some form of terminal illness? They stopped her IV fluids and stopped feeding her and allowing her to drink. They have since moved her to a nursing home. I was told she was in her "final hours" the week before Christmas. Here we are days after the New Year and she is still here with us. I had been trying to feed her and give her drinks because she was not aspirating with me because I know her and know how to feed her and how to help her. When it was discovered that I was helping her to eat and drink my visiting hours to the nursing home to see her were cut down to 1 hour a day. I am just trying to advocate for this person who came into my life 6 years ago. She's a sweet and amazing person and I hate to see her go through this. She is not ready to pass - I have tried contacting APS, disability rights, various attorneys and I'm getting nowhere! It is breaking my heart watching her go through this, starving and there is nothing I can do about it. There has to be someone out there who knows what else I can try, or who could help. Someone please, before it's too late.
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It usually family then it is the state. Most often the state keeps people with handicaps as full codes. If she is on hospice that means the hospital doctors went to the ethics committee. The ethics committee decided to make her a DNR. They in turn petitioned the court to make her DNR. I am guessing she is a ward of the state. If she has family that made this decision then contact them. Lately I have seen a fair amount of mentally disabled adults being made DNR not all have had Covid. But it's a new trend Covid seems to be the cover. But it used to literally take an act of God to make a ward of the state a DNR. But not anymore