This is the only place we can be 100% honest about how we feel, what our fears are etc. With family and friends we have to control what we say so they are not hurt, afraid, scared etc.
Please call your local hospice and ask for an evaluation for your person that needs extreme care. Then ask for help with talking to the kids, then ask for a free counselor or group, ask if they know of the volunteer caregivers in your area, ask them everything and anything you need.
This is a life-limiting disease, but only God knows when it's time. I cannot tell you how many people I've done respite for that got well while on hospice care and came off and lived a long time. I'll guess and say 20 out of 80 people per year got better. With the care, help, support, nursing, bathing, respite, your loved one gets they can and do get better. After all, we don't know, our loved one could start getting better tomorrow and live, hmmm, let's say, 11 or 12 good years.
If you have no insurance all of the hospices in my area will care for your loved one for free. If you do have insurance they bill the maximum daily allowed, say $115.00 per day. If your person only needs $45.00 of care and supplies, the other money goes into a "pot" for people who don't have any way to pay. If you need $600.00 per day, they use your $115.00 and take from the "pot" to pay for the rest. People donate to their local hospices regularly or leave them their entire estate. The loved one gets such good care, the family gets such good care and support that they donate. They do not pay for curative care, they pay for comfort care. So they won't pay for the Avastin or Temodar, but they may pay for the dex or pain meds, beds, wipes, pads, oxygen, bedside commode, etc.... or anything related to comfort and dignity and quality of life.
Really, really, people, give your local hospices a call. If you live somewhere that doesn't have one, contact a social worker at your local hospital or cancer care center. Ask for help, ask for free help, ask for help with the kids, grandkids, you, or anybody touched by a life limiting disease.
--Sandy Mayea Miller