Democratic Underground

My Grandma Ruth, Alzheimer's, and Stem Cell Research
July 25, 2001
by Modem Butterfly

An open letter to Mr. Bush:

I'd like to tell you about my Grandma Ruth. Grandma Ruth was a bright, patient woman with dancing blue eyes and soft skin that always smelled faintly of baby powder and rose water. She had soft skin and was a brilliant seamstress, artist, gardener, carpenter, and cook. She passed her talent for working with her hands to my mother, who went to art school and took up home remodeling as a hobby. She learned these things at her mother's knee, since Grandma Ruth had helped my Grandpa Al to build their house from the ground up.

Of course, I never got to know this side of Grandma Ruth. My earliest memories of her are as a sweet lady who seemed to have a lot of nervous habits. She was always tapping her foot, shaking her head, or dropping things due to her inability to hold her hands still. She had given up on drawing and painting and by the time I was eight, she was no longer able to sew. Still, she was a kind woman who knew how to tell a good story and she was incredibly patient with all of her eight grandchildren. She would take us shopping for adult clothes at Salvation Army so we could play dress-up. She refurbished several bicycles and tricycles so we would have things to play with at her house. She would talk Grandpa into demonstrating the Texas Two-Step and the Tennessee Waltz to their old country records. I don't' ever remember her getting angry or depressed, though I now know she certainly had a right to. You see, about the time I was born, Grandma Ruth was diagnosed with Parkinson's disease. Ten years later, she would be diagnosed with Alzheimer's.

After my grandpa's death, Grandma's health took a turn for the worse. Alzheimer's made it difficult to keep up with her medicine, or even to take care of herself. Grandma Ruth came to live with us when I was about ten years old. Since my mother had to work, I became her first primary caretaker, and she became my baby-sitter. She would make sure that I came home from school safe and was working on my homework. I would make sure she had taken her pills. Our relationship slowly changed. Gradually I became responsible for helping her get dressed, helping her bathe, helping her eat. When my parents weren't at work, they took over. Grandma Ruth stopped recognizing me. She had regressed from being a capable, independent woman to an infant. During her lucid moments, she would beg my mother to help her die. When she tried to take matters into her own hands, we knew that we could no longer care for her at home.

Grandma Ruth died of Alzheimer's when I was sixteen. She did not die peacefully. When Alzheimer's kills, it starts with memories and progresses to bodily functions. In the end, my grandma died because she could no longer swallow. She lingered for seven days. She weighed 72 pounds at the time of her death. The doctor told us we were extremely fortunate because she had a few final moments of lucidity before she died. She thanked my mother for letting her go. She called me by my name for the first time in years and said she loved me. The doctor told us that most families of Alzheimer's patients aren't that fortunate. No matter how many times I think about the day she died, "fortunate" is not a word that comes to mind.

Alzheimer's deprived my family of Grandma Ruth, but it took so much more away from us. I lost my childhood to Alzheimer's, because I needed to grow up fast to deal with her illness. My brother and I lost our mother to Alzheimer's, because the pain and guilt she felt over my grandmother's illness and death drove her into a dark, persistent depression that didn't lift until I was in my early twenties. My parents lost their retirement because of her medical expenses. My father lost his health because of the sixteen hours a day he and my mother had to work to help pay her medical expenses.

I don't envy the position the stem cell research debate has put you in, Mr. Bush. I know that you find yourself locked between science and sentiment. I know that there are many persuasive voices urging you to protect the potential lives of embryos. However, in the balance are the lives of millions of actual, living human beings who are dependent on this research to give them health and hope, people who suffer from Parkinson's, Alzheimer's, diabetes, MS, cancer and other diseases. I'm writing this to not only remind you of them, but of their families as well. You see, when one family member suffers a debilitating or terminal disease, the rest of the family suffers right along with them. Withholding this research will not only be a death sentence for those with terminal illness, it will also be a cruel blow against their loved ones. Just as no one truly lives alone, no one truly dies alone. When you consider the potential human beings that would be affected by stem cell research, please don't forget the actual human beings who have waited so long and endured so much in the hope of a cure or a treatment for ourselves and our loved ones. Please don't take away our right to life.

 
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