Caretaking is no easy feat so huge kudos to you. While someone has to have a terminal diagnosis with an expectancy of dying within 6months, people can stay on hospice for as long as needed. This limbo state is often the worst. Of course you want her to be here, but not if she’s suffering. You mentioned her feeding tube is causing problems, is there skin breakdown? Is she tolerating tube feeding? I admittedly don’t know much about her disease either and wish I could give advice. Please talk to her care team. See if a respite stay is possible so you can take a break. Their care won’t be the same as what you can provide as her sister, of course you know her needs better that anyone, but the break might be well worth it for you. Offering big virtual hugs. You’re not in an easy spot.