My sister is dying. Of course we are all dying, but she is withering in the advanced stages of Huntington’s disease. We have not been close, my sister and me; ten and a half years and different mothers separate us. She was beautiful, and ebullient, and loved life; many years ago. When I last saw her, six or so months ago, her halting gait and tortured speech reminded me of the same phase that my sister, Pam, one year older than I, and our father went through before they succumbed to the disease.
Now my sister is in a nursing home and we can only look back fondly to the days when she could walk and talk, however difficult those functions were. Now I am told she sits near the nurses’ station where staff can keep an eye on her. Her frequent stubborn efforts to get out of bed have resulted in several falls, so staff keep her nearby. She is angry, sometimes refusing to open her eyes or acknowledge visitors’ presence or utter the few sounds she can still make. Her mother, now 84 years old, could no longer care for her at home, and takes three buses each way to visit her in the nursing home three days a week. She is tired, and my sister is angry, and I am sad and guilty. Her mother is going on a trip next week, she tells me. A short visit to her sister’s house in Virginia Beach. She hasn’t been out of the house, except for my sister’s doctor appointments for a long time.
My sister’s son, who lived with her mother and her, moved away several months ago. Worn out and depressed, I am sure, by the omnipresence of death and reminder of mortality his mother represents. In his early thirties I am sure he needs to breathe, to experience the lightness of life that exists just beyond the dark, stifling burden of a long decline and lingering death. Though his grandmother tells him he will not have good luck because he neglects his mother, I understand his need to escape.
So my sister’s mother was left alone to shoulder the burden of my sister’s care, and it was eventually too much. My sister began to fall and her mother could not keep her safe. Though my sister’s mother is “elderly” by age, she does not seem so in reality. She seems strong, like my mother was, capable, a “do what you have to do” woman. On the phone with her today, however, with my sister in a nursing home, she seems fragile, vulnerable, exhausted. The men — her son, my sister’s two sons, and even my brother who still lives in the same city – do not deal well with my sister’s illness and impending death. They avoid her. Men cannot handle what a woman can handle, my sister’s mother tells me. We women do what we need to do. We are sad, we hurt, but we do it anyway. We are strong.
I cannot imagine losing a child. My mother buried two children, lost to this disease, and a husband. She, like my sister’s mother seemed so strong, superhuman. But they just did what women do. We care for our babies relentlessly, determined to keep them safe, no matter what. Then we tuck them into bed at night, and kiss them, and send them home to God.
Carl Bertling – Junge Römerin mit Kind 1877 – Public Domain
First Posted At Journey of a Grown up Black Woman