It's so hard to keep my focus on what's going on with Bob, without all my emotions getting in the way. It's been a long haul. Last October we were told that it was over, he was palliative and was treated as such... it was a terrible pneumonia. Darned if he didn't rally around and pull himself out of it! Amazing, but that's the determination he's always had in life. Now he's at a point where everything that goes in feeding tube comes up and is aspirated. So...they've put ports in to admininister meds interveinously. But, still giving small tube feeds. It's risky, the doctor has said it's a matter of time, either he aspirates and dies from pneumonia or he slowly starves to death. Bob isn't willing or ready to give up the fight. Not being in his shoes, I don't understand it, the quality of life is not good. He is bed ridden, has very little communication, a finger squeeze now and again, I'm just so sad. It's been 6 yrs since diagnosis, and several yrs prior, waiting for a diagnosis. I'm exhausted mentally and emotionally. Just had to get that off my chest!
Joan