End of life reality
I don’t know why it always surprises me that Riley continues to be immortal. A few days ago we were told that he had only hours to live. The next day he rallied and he could live another year or more. We are living on a see-saw with Riley. End-stage liver failure is a horrible way to die. I watch him as he struggles for words that fit the meaning of what he wants to say. I see the confusion on his face when I don’t understand what he’s talking about. Often he will be in mid-sentence and begin quoting phrases from books that he has read in the past. Riley cannot control his bowels or his bladder. He doesn’t seem to have any cognitive awareness of his lack of continence. However, he will pick at his diaper until he can get it loose and remove it from his body. He then wants no covering and just wants it to be in the breeze -- so to speak. He has other people clean the feces from his buttocks, change his clothing, and give him a sponge bath. There is no longer any sitting in his favorite ...