Living in Limbo: When a Spouse or Close Family Member Has an Incapacitating Illness

Abstract

A Wife My husband, now 77, abruptly joined the ballooning population of mentally or physically dependent people when he had a stroke following cardiac surgery. Living with, or being responsible for, someone who is absent and present simultaneously is in limbo, a term my dictionary defines as indeterminate state midway between two others. These people we love, now physically or mentally compromised or helpless, are alive, yet, in essence, they have died. We are bereft but not formally bereaved. We have lost our previous designation, yet no ritual helps us leave what was and enter what is. For example, last winter was asked to complete a form by checking a status box showing whether am * single * married * separated Q widowed * divorced am four out of five, and am none. Each of us living in limbo moves at a different pace, tries different shortcuts, stops to rest at different intervals, notices different patterns of light and shadow, gathers different wildflowers, and stores different images. But we are the same in that we started in familiar territory and now are wondering whether we are at a fork or a roundabout. Even though there is no predicting the height of the pinnacle, the width of the abyss, or the depth of the canyon, through the miracle of language we can call out to one another, sharing discoveries, pinpointing bedrock, warning of quicksand or crevices, or kindling a few warm fires in caves. We can leave clues and trail markers. A notch on a tree or a cairn at a pathway is evidence that someone has walked this way before. Through two years of gyrations, balancing acts, unwelcome combinations of reaching and recoiling, groping and coping, grieving and functioning, managing and misunderstanding, feeling abandoned and supported, alone and surrounded, being needed and feeling inadequate, praying, yearning, weeping, imploring, churning, resigning, despairing, fearing, accepting, and occasionally laughing, am learning-a kicking, screaming, reluctant student-to swallow and digest truths which are both necessary and repellent. Now, in a relatively stable interlude, want to offer my gleanings, questions, and some of my own soul's batterings in hopes that others, similarly beset, may they are not alone. Words are lanterns we can swing for one another. At first was reluctant to make these experiences and thoughts public: loss of privacy, shattered dignity, uncovered weakness, paralysis, confusion. Exploitation? But a physician friend whose practice centers on the frail, vulnerable, elderly told me that if could grab the courage to write this, could put my anguish at the service of others' healing. Far from stripping my husband of dignity, could clothe him unmistakably in love, which no disease, no illness, no time could ever take away. OUR STORY Most of the things write have a beginning, a middle, and an end. What am doing trying to write this? Where are we in this journey? don't know. I don't know has been my unwelcome mantra since the day two years ago when our lives collided with paralysis, despair, terror, confusion, emergencies, black humor, and hope. thought understood hopes, but many of mine aren't the Hallmark card variety. My husband, integrity personified in his elegant posture, has always been a lean, laconic New Englander. Underneath the dignified mien of the lawyer, however, is a sailor ready to explore any waters, a man with an eye for style and color evident in our modern house, the L.L. Bean moleskin rat-catchers he wore on weekends, or his shirts and neckties. A natural dancer, he was equally comfortable with free-form exuberance, the Charleston, or a fast Viennese waltz. Athletic, his sports included golf, tennis, paddle tennis, and court tennis, an arcane sport he always described as perfect for old farts. He cut down brush, transplanted ferns, cleared woods, and built stone walls. …