One of my deepest, most powerful fears is that I will be reduced to the situation of an infant, helpless and incoherent. I fear that you will forget who I am and treat me with disrespect. Even thinking about others taking care of my most intimate needs makes me feel ashamed. And every step closer to death makes me realize I will soon be totally dependent on others. Please try to understand when I resist giving in to one more change, one more loss. Help me to take care of myself, even in little ways, so that it will be easier to tolerate the bigger changes which are coming.One of the biggest challenges my brother and my dad both faced is the concept of being reduced to something less than a whole man. To some extent, they were raised to equate work with worth. A man is what a man does. To no longer be able to do what you love does something inside to a man. And it's not pretty. It's damned hard to watch and it's a damned sight harder to have to intercede on their behalf.
When everyone treats me as though they know what is best for me, I get so angry. Aren't I the person who is ill? Isn't this my life, and my body?