So... it turns out that after a little googling, I have discovered that feeding tubes and elders is more of a hot issue than I realized. From what I gather, the issue is usually in whether to place a feeding tube in an elder who cannot feed themselves due to dementia. That is not what led to my situation, but it is polluting my search results so much I'm getting frustrated finding good information about elder care options when there are feeding tubes involved.
Short story for those who don't remember: my mother was diagnosed with throat cancer and underwent chemo/radiation. It is not unusual for head/neck cancer patients to get a feeding tube during treatment even if the cancer itself isn't intruding on the throat because the radiation itself makes swallowing very difficult. However, my mother, now 69, isn't participating in her own recovery. Not doing the throat/swallowing exercises necessary to relearn how to swallow and get off of the feeding tube. So the tube is a fact of life for the foreseeable future. And she is becoming less and less engaged in the world in general. Not exercising, not cleaning up after herself when she makes (horrible) messes in my sister(primary caregiver)'s house.
The short of it is that there needs to be additional help. I don't know if it needs to be in the form of a visiting service or an inpatient location, but she is behaving in ways that are increasingly dangerous to herself and the household pets.
The sticking point is the PEG (feeding) tube. Apparently, a lot of services are not legally allowed to be provided if the patient has a PEG tube. For example, assisted living is not allowed to take patients with feeding tubes by law in this state (Florida). Does anyone have any experience with what kind of services do provide for patients with feeding tubes? Are there visiting nurses? Is nursing home the only option?
My sister and I are being held hostage by her feeding tube and her refusal, for whatever reason, to work to get off of it. I just spent the morning at the hospital getting the tube reinserted after it came out, since she won't care for it properly. I'm exhausted of the situation, and I don't even live with her. I'm just hoping that someone else has "been there, done that."