Hello MsLouisville,
Sorry to hear what you are experiencing.

Have you discussed your concerns with your doctors, or requested to be assigned a patient advocate? If your children do not want to assist, then having someone to counsel and advocate for you may be the best way to go.
Not knowing where you are or what type of health coverage, those are just some thoughts I have.

I do hope you are able to have someone come alongside to guide you.

Perhaps those with more knowledge in this area will be able to offer some relevant info for you here as well.