My mother repeated a family expression in times of joyful confusion: “ ‘We’re lost!’ the captain shouted as he staggered down the stairs.” She always claimed she didn’t know what it meant. It was just an old family expression. She laughed every time she said it.
The truth is that I often felt like a failure. I often felt despair and desperation. I lay awake and night and worried about all the things I could not do for Mom. I worried about how to do what I could better, about what would happen if I collapsed in a heap and could not do them any longer. And I resented her for taking up all my time and emotional energy. I felt angry that she ignored the advice of doctors and nurses and occupational therapists and the meals from the Meals on Wheels—all the people and support outside what I could give that she refused to accept. And I recognized that her stubbornness not only served her character one reason she survived, but also the reason she suffered sometimes more than she needed to, more than she should have. And sometimes that made me so angry I choked. Nevertheless, I carried on. I did everything I could. I spent much of my waking hours worrying and doing for my mother. I did that for years while my hair was turning gray and and that’s where my fifties went, in a flash of sometimes-agony and dark humor with my husband, driving home from the ER night after night, cleaning and shopping and carrying and sitting beside her in hospital rooms and waiting to go to bed until after she was settled at home, wishing for help and not finding it, changing doctors and having nurses and therapists tell me the truth the doctors mostly did not.
I want to believe I did the best I could for my mom. I hope that’s true. I want to retrace those terrible years so that I can construct a highway through them, a way to find my way back to the good times by clearing a path through the dark forest.