No Saints around Here: A Caregiver’s Days

No Saints around Here

29 NO SAINTS AROUND HERE February 19 This morning, tired from a broken night’s sleep troubled by bad dreams, I was not in a good mood. So when I had to get up from the breakfast table three times to reheat James’s coffee, I soon became snappish. “I wish,” I said snidely, in a martyred tone that I learned (alas) from my mother, “you would try to drink your coffee before it gets cold so I wouldn’t have to jump up and down like a jack-in-the-box.” James did not respond. He never snaps back. I silently scolded myself as I walked to the microwave. Of course I know he thinks slowly now, he eats slowly, he doesn’t remember to drink his coffee . None of this is his fault. He has Parkinson’s with dementia. What has happened to me? I try to forgive myself. I did make my special whole-grain pancakes for him. I pulled over a floor lamp so he could look at the newspaper more clearly. I folded the newspaper to a readable size. I put on his “apron,” which is what we call a longish bib, and pushed him carefully into the table. I made sure he had all his pills, water, Kleenex. I’m not an unfeeling spouse. I’m just not a saint. This morning’s irritability was not a rare instance of my failing at sainthood. I sigh a lot. I don’t mean inner sighs, but audible, no saints around here 30 listen-to-me sighs that clearly signal I am fed up or I can’t believe this! or How can you ask that? Maybe James only asked for a glass of water, but I had just opened a letter I wanted to read, right now. Maybe he is taking a short nap, and after doing dishes and emptying garbage, I have just lain down on the other sofa. But no sooner do I put my head on the pillow than James raises his own head. “Is there a basketball game on?” he asks. Never mind that this is Monday afternoon, no playoffs scheduled, maybe a small-town high school team playing somewhere, but certainly not on cable. He doesn’t know that. He is awake, and I have to get up. He needs attention, a move off the sofa, something to do. I heave a there-goes-my-nap sigh. Oh, yes, James hears those sighs. Mostly they pass over him, like a short, sharp breeze, and he does not seem to notice. Or he may look up, briefly puzzled, and look at me as if he doesn’t understand why I am sighing. And he probably doesn’t. But sometimes, when he sees my face, my eyes closing for a second (oh, no! how could this be happening?) and my voice taking on that awful forbearing tone (can you see i’m gritting my teeth right now?), he’ll say, with a brief moment of recognition, “I’m sorry.” Then, of course, I feel terrible. I have a shelfful of books that help me feel guilty. Soon after James was diagnosed, I bought books about Parkinson’s. After the first book or two, I didn’t find them very useful. I have learned that everyone’s Parkinson’s is different, something our neurologist confirms. Some sufferers cope with jerky movements, tremors, and freezing episodes when their bodies refuse to move. Others have minor tremors but major mental losses. Some lose their voices; others hallucinate. Some contract the disease fairly young and die quickly, while others last for astonishing decades. Nothing is predictable. I also began acquiring books about caregiving. One friend, who is interested in the spiritual component of health, brought me several volumes she thought might be useful. They had titles no saints around here 31 like—not exactly—The Rewards of Caregiving, A New Commitment , Love All the Way, and How Caregiving Made Me a Better Person. After dutifully plowing through them, I became more depressed . Many of these writers seemed determined to remind me of my flaws. I frequently failed to concentrate on the beauty of each passing moment. I thought too much about the future. I didn’t meditate enough. I began buying memoirs by caregivers who had taken care of their aging parents, a father with Alzheimer’s, a mother with terminal cancer, story after...