A Message to Caregivers

I never thought I’d know my brother. I never thought it would come in the last month of his life. I never thought I could do what I did. I never thought I’d recover from it. I never thought I’d be a caregiver. Death put everything in perspective for me. I know now that it is not the great, profound experiences that give meaning to life, but the tiny moments, the slivers, the details. The paying attention. The caregiver’s life is full of details … most of them unpleasant. Where does the strength come from to do what must be done?

When everything I had named as “quality of life” and relationship had been stripped to the core as my fifty-three-year-old brother lay helpless in bed, dying of AIDS - incontinent, unable to turn himself, scratch himself, feed himself -my life became nothing but the details. It was the easiest thing I had ever done. It was the hardest thing I will ever do.
When the need is real, the job is clear. Not profound. Basic and real. When my brother’s hair needed combing I combed it. His pillow as often damp. A head against a pillow sweats. He sweated. I turned his pillow. I grew to love his body with my care. Instant intimacy. He stared while I circled the bed. And somehow, through those days of watching, of waiting, of tending, the days mattered. Moments counted. Time was finite. There was a clarity and focus. The death bed dance. Days of ache, of tears, of purging grief; teaching me to let go; teaching me to accept; teaching me to say thank you; Teaching me to live. Teaching me that we are all capable of more than what we think.