Amy:
I'm starting a new thread here so not to impinge on your journal. As caretake to Gil, this is my first experience with caring for anyones serious medical needs. When my children were tiny and needed shots , I handed them to the nurse and left the room because it made me quesy.I agree- we are almost nurses now. When people talk about how hard it is to sustain love- it is all the pretty things. The ability to do what you are doing is truly love- it has brought out internal resources that are enabling you to care for John. Straight out- I'm not from the Ozarks but from Upstate Hardscrable New York and a social worker for 37 years.So here it is - This same enabling ,I believe, is keeping you frm accepting outside help.
Hospice or whatever is in your home town has the professional resources that John and you need. They also come in with a different perspective because they are outsiders. Even though John doesn't want this- he truly is not the one who should be in charge at this point. The level of care that is evolving will put him back in the hospital and not in the beloved comfort of home.You can not continue to do it all.Geting the help he needs is your strength not your weakness.

caring about you and John

Paula