The Choices We Make
by Luci N. FullerI know that Mom doesn't want to think about death — does anyone? — but it seems that death is thinking about her. We sit in the hard wooden chairs of a hospital waiting room, waiting for yet another test. This time we will learn whether or not the tumor in her esophagus has spread to her breathing tubes. We hope not. We hope not. It's like an exclamation point ending each thought: We hope not. Mom is beside me, both feet planted firmly on the floor. Her strong, lovely hands grip the arms of the chair. Looking at her hands, I can almost see the pastel yarn stretching between her fingers as she crocheted the hats I wore as a child, and the blankets she made for each of my newborn babies. Looking at her hands, I remember the way they cracked and bled from the chemicals at the factory where she worked years earlier. Looking at her hands, as she covers her mouth to cough, I see that they are trembling. Quietly, I clear my throat to speak, and when Mom turns her face toward me, I ask, "Have you filled out this living-will-thing?" I lean toward her, sorry, because I know that she doesn't want to think about it, but not sorry, because I know she needs to. We had three copies of the document at home; Mom's oncologist had urged her to record her wishes for end-of-life medical care. I had secretly studied the advance directive in the dim morning light that filtered through my bedroom window. As I read it, the knot in my stomach would not allow me to cry, although I wanted to. I wanted to weep at the choices we have to make. "You'll know what to do," Mom finally answers, and I have to admit that I feel a wave of pleasure because she trusts me, and because I am so very competent. I press for details: "I think I do know, but please, say the words." Mom looks into my eyes and quietly adds, "I wouldn't want to prolong my life if there was no hope of recovery." Then — and this is what kills me — she looks quickly away, as if she feels guilty, as if it is wrong to say that she will let her body die. An hour later, the doctor has sent a camera down Mom's throat to take pictures of her tumor. Afterward, Dr. Peterson asks to speak with me alone. His voice is strangely distorted as he tells me the news; I plainly see his red hair, light blue eyes, and thin lips moving, but only certain words are audible: "Worst possible news...cancer has spread...just awful...hospice...so sorry." I, bereaved-but-competent daughter, walk back to my mother's bed. Her chest hurts. I tell her, sincerely, that I wish I could take some of the pain for her. Not all of it, I add, winking. "Have you heard about the machine that lets the father of the baby feel the mother's pain for her while she gives birth?" she asks. I haven't, so she tells me the joke. We laugh, quietly, because we are in a hospital, but heartily, as if it is our last joke.
Mom chose humor to deal with her adversity. Denial, sometimes. Faith, in large amounts. She chose to continue treatment, hoping that the band of her life could be stretched out long enough to allow the miracle she prayed for to arrive in time. Mom moved in with us, so that I could take care of her, and her last days were some of the most peaceful she had ever known. She wrapped herself in the warm soft fabric of our family, comforted by the joyful sounds that children make as they play, and by the scents of savory cooking that drifted up the stairs to her room. She rested a lot, talked less and less, and became thinner and more beautiful as the strange days slipped by. More times than I can count, she said, "I love you," and as many times, I answered, "I love you, too, Mom." When she developed a high fever from what turned out to be pneumonia, I drove her to the hospital. "I don't want any more procedures, Luci," Mom said as I backed out of the driveway. "I just want to be left alone." Relieved to be going, Mom said that she looked forward to the adjustable hospital bed. She thought that she and I would both get some much-needed rest, and Mom probably thought that the decision-making was over. It wasn't. I felt as if we had been swept into a fast-moving river, where crisis followed crisis with mind-numbing rapidity. Within hours, Mom's ability to communicate became impaired by the morphine upon which she relied for pain control. She spent most of her time sleeping, waking only occasionally to share strange visions and dreams. For 11 surreal days we braved the rapids, with only our instincts to guide us. Near the end, writhing in pain, Mom grabbed my arm and gasped, "Luci, I have to get out of here!" I asked if she wanted to come back home with me. "No," she answered, urgently. "I mean a long way from here." I stood in the hallway with my mother's doctor and begged him for what I thought Mom wanted. "Take her off the antibiotics," I pleaded. "Let this pneumonia take her, since something must." Two days later, my mother and best friend slipped out of her pain-wracked body and into the Divine. My grief was softened, for awhile, by the honor I felt at her trust. Now, my own words echo painfully. You see, Mom and I shared a close relationship; I think I knew her as well as anyone could ever know another person, but now, the questions haunt me. What if I misinterpreted her vague statements? What if she needed more time? Sadly, I will never know the answers to my questions. I've learned that when it comes to end-of-life medical care, we should expect the unexpected. Complications will arise. Questions will be asked. Choices will be made. There will be consequences. Who will bear the responsibility of choosing? Today, I filled out the paperwork for my own advance directive. I shed more than a few tears as I thought about Mom, my children, and the unavoidable fact that I, too, will someday die. Then, I recorded my wishes and made copies for my husband, my friend, and my doctor. Some questions are too important to go unanswered. According to a 1991 Gallup poll, only twenty percent of Americans have made their wishes regarding end-stage care known and legally binding by recording an advance directive, or "living will." For free help with filling out your directive, or to order state-specific documents for your personal use, call Choice In Dying at (800) 989-9455 or visit their Web site, <http://www.choices.org/>. Photo of Luci Fuller by Stewart Harvey. |
