No Saints around Here: A Caregiver’s Days

Together

32 TOGETHER February 22 At unexpected times, when I’m doing a task that I may not even find all that onerous, James will say, clearly and with feeling, “You are my hero!” I throw my arms around him. He recently told me, “I can’t thank you enough for what you do for me,” a whole and coherent sentence. Those words lifted my steps up and down many, many more stairs. Someday he won’t be able to say that, and I’ll just have to remember when he did. I don’t know how caregivers endure who, before their unrelenting caregiving began, did not have a happy marriage. I met Marcia, now in her late seventies, when she was briefly visiting a friend here. We all had lunch together. Marcia had nursed her husband Tad at home for seventeen years of Parkinson’s. Tad had refused—flatly, stubbornly, angrily—to have anyone but Marcia care for him. They had no children. The whole burden fell on Marcia. Marcia’s only support was her church, where she had taken her marriage vows, in sickness and in health, with unshakable seriousness. I could understand all this, but what I couldn’t grasp was how she continued to care for Tad after the difficult years of marriage that preceded his illness. I listened to anecdote after anecdote as Marcia told me how Tad had dominated her, his refusal to together 33 consider adoption, his unpredictable temper, his dislike of travel , on and on. I found myself asking her what so many wellintentioned friends ask me, “Why didn’t you consider a nursing home?” “Tad wouldn’t hear of it,” she said simply. I have been graced. I don’t know many people with truly happy marriages. My own first marriage in my twenties failed after a dozen increasingly difficult years. Then I was alone for over a decade, convinced I’d never marry again. Meeting and marrying James in my early forties felt like a miracle. Our twenty-eight years together, even before Parkinson’s, weren’t always smooth; we had blips and bumps and some bruises as well. But we took great pleasure in each other’s company. We talked together about everything, large and small, and we laughed a lot. In our altered life now, I think I miss most that easygoing, shared laughter. We were both curious by nature. If one of us said, “Maybe we should try that out? Or go here, or there?” the other usually agreed that this was a splendid idea. If one of us suggested, “Why don’t we take a chance and turn down that road?” off we went into the unknown. As an unspoken foundation, we shared fundamental values, planks firmly laid so long ago that we never had to look down to see where they were. (If one of us got off track, the other noticed and called attention.) We had respect for each other’s integrity and work. We never lost our physical attraction. If I have a hard time these days remembering how lucky we really were—and as James dwindles and fades, and I grow more tired and despairing, I do need to remember—I only have to think of the two of us in the front seat of a car. We traveled often. Alone together, as James drove—I had supreme confidence in his driving—I leaned as far over as bucket seats would allow, my head on his shoulder or (if my neck started to hurt) my left hand firmly on his thigh. Of course, occasionally it rained, but in my memory , the sun is bright. I am half-dozing in the warm light flooding together 34 through the windshield, my hand feeling James’s warmth as well. “Isn’t it time for you to consider a nursing home?” How can I answer? I can’t explain all this to anyone, not those twenty-eight years in the detail they deserve, the unwavering support, the wounds given and bound up, the conversation and the laughter. “Wouldn’t James, if he could have foreseen what would happen, want you to have a less stressful and exhausting life?” That is an unanswerable question. But it is irrelevant. ...