Thanks so much. It really does help to know yous understand even my situation. I really doubt Rich will ever let anyone but me do his personal care. He had problems with that when this first started 3 years ago. It took ages for him to get comfortable with even me helping him. So far there are no dressings, but I believe he will understand I can't do that as I can't bear to look in his mouth at this point. The last time I did the tears started flowing and I couldn't convince him I had something in my eye.
I should clarify I have dealt with the final stages of lung and bowel cancers never with oral cancer. And in a nursing home its a team approach. The thought of what is to come terrifies me. He has so many health problems I pray one of those take him before it gets that bad.
3 Years ago he was told he had less than one year to live, it was too early for hospice help so we had none. We both went though pure hell for about a year as we both had to become accoustomed to his new normal, his need for assistance in personal care, his refusal to return to the doctor... When this started and he was thinking about refusing treatment, I told him I could not do this alone again and if he also refused hospice I would place him in a nusing home. I just refused to watch him suffer again without the care and meds that would help. Just knowing hospice is on call is a great relief. If just weeekly visits is all he wants right now I'm fine with that as I know that can and will be changed as his condition warrents.
Thanks for your understanding. It means so much to vent to others who do get it
Julie

Juli- plese know you are both in my prayers. Keeep on posting and know many are here for you. LJ

Julie,

What a difficult journey. I will have you and your husband in my prayers.