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Courage in Caregiving Earl E. Shelp, Ph.D. February 18 and March 31, 2012 Do you read obituaries in newspapers or on the Internet? When I was a younger man, these announcements of a persons death, survivor information, activities in life, and plan for funeral or memorial services were of little or no interest to me. If I saw an obituary of a public person, however, I paid more attention because of their accomplishments or shortcomings in life. At times, an obituary chronicled both. At the mature age of 64, I have become more attentive to obituaries. The sand in my hourglass seems to be draining more quickly now than when I was a younger man. I do not read all of the obituaries that I see each day, but I usually scan the names, just in case I recognize someone. And, I confess, I have become more attentive to the ages of those who have died. When they are older than I, I derive some comfort that I may have many years to live. When they are younger than I, I am reminded that to have reached my age in reasonably good health is a gift that I should not count on keeping forever. If I have learned nothing else in 25 years of leading the caregiving programs at Interfaith CarePartners, I have learned that life is fragile and that the length of our days is uncertain. Sometimes I read all of an obituary. At times, the cause of death is included and frequently it will note that the person waged a courageous battle against cancer, Alzheimers disease, Lou Gehrigs disease, AIDS, or another condition. This description of the deceaseds last days as a courageous battle seems fitting and ennobling in certain respects. She or he apparently nobly resisted forces that ultimately became overwhelming and victorious. We tend to perceive a life-threatening disease as an enemy which we seek to conquer. It is an unwelcome and untimely intruder in life, no matter the age at which it enters. We enlist allies in health care, family, and friends to join the fight against these degenerative powers. These allies have important supporting roles in a war that a threatened person seeks to win. The one in the fight is the central character in this human drama. She or he is the one who seems to have the most to win or lose. She or he is the one described in an obituary as the courageous one. Family members who fought alongside and lost, as well, are named. They may be described as grieving, but never have I read that they, too, were courageous during the deceaseds final days. In our moments together this morning, I invite you to think with me about courage in caregiving. I want to propose that courage is required of caregivers at times and in ways that tend not to be recognized. Moreover, if it is appropriate to praise a deceased person for courage, then permit me to praise caregivers who exhibit courage in their own ways. Although there is debate among philosophers about the necessary conditions for courage, there is general agreement that in order for an action or inaction to be courageous the elements of danger, risk, uncertainty, and choice must be present. A few comments about each of these

elements with respect to the contexts of caregivers, especially family and friend caregivers, may help you understand the relevance of courage to caregiving. The first condition is danger. All humans exist in a dangerous environment. There are forces in nature and events that can injure or harm us in a variety of ways and degrees of severity. We are vulnerable to these forces and events. An encounter with them is not a question of if, but when. Our lifespan is short, no matter how long we survive. Some encounters are relatively inconsequential, whereas others may be disrupting, disabling, or lethal. Some threats, like the approach of a speeding car, are visible. Other threats, like infectious organisms and dysfunctional cells, are unseen. Danger is all around us. We are vulnerable to injury, harm, and death. As such, courage may be required to get out of bed each morning. The second condition for courage is risk. As vulnerable beings, we are at risk that the threats which surround us will actually find us. We are at risk for bodily, emotional, and social adversities that disrupt our daily activities, goals in life, and relationships. These threats have many names cancer, Alzheimers disease, stroke, trauma, diabetes, Parkinsons disease, and countless others. These conditions may weaken and impair us. They may cause one to depend on others to assist with tasks of daily living. These adversities tend to redefine and restructure relationships by adding the title caregiver to ones existing role of spouse, child, sibling, kin, or friend. A family members or friends need for care affects everyone within her or his circle to some extent. The change that follows may be emotional, social, or physical; all of which has positive and negative potential. For example, studies of caregivers show that they have high blood pressure, greater stress, more depression, coronary disease, and abuse of alcohol and drugs, as well as higher death rates than comparably aged persons who are not caregivers. Clearly, the realm of risk in which courage may be required is not limited to the person in need of care. The third condition for courage is uncertainty. There is no uncertainty regarding the nature of the human condition as vulnerable and mortal. However, all that precedes the end of our days is contingent. Rarely can we be sure that an action will result in a desired outcome. I may start my drive to the office, but I cannot be sure to reach it. A person may begin chemotherapy to combat a cancer, but remission or cure cannot be guaranteed. It is this step into the unknown with the attendant risks for good or ill that may occasion courage. Uncertainty in caregiving situations is not limited to the person weakened by age, disease, or trauma. Caregivers share this journey into the unknown. Hope and despair are your companions along the way. Your life is changing in ways you do not wish. A future you imagined may now be in doubt. Nevertheless, you cling even more tightly to your loved one or friend as you face each day. What happens to one affects the other. Each day becomes an adventure into an unwanted unknown; anticipating good, but mindful that the outcome we desire cannot be assured. For all who give and receive care on this journey in uncertainty, courage may be required.
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The last condition for courage is choice. When shadows of finitude darken our horizon, the significance of the choices we make becomes magnified. Which therapies do we select? Which capacities and activities are we willing to surrender and which are we not? With whom do we wish to spend precious time? What legacy do we wish to impart? What facts and feelings do we choose to share with those we love or whom we value? Persons who need care generally are thrust involuntarily onto a path marked by progressive weakness and dependency. They may make many decisions along the way that influence the course of the journey. Family and friends, however, enter the world of the weak voluntarily. You could refuse to provide the needed care. You could abandon your loved one or friend. And, I can tell you from experience, this is a choice some family and friends make. Caregiving, especially of the self-sacrificial kind that you in this audience provide, requires courage. Your love or loyalty to the person for whom you care will not allow you to turn away from the dangers, risks, uncertainty, and choices that are inescapable along the way. What is happening to your loved one or friend matters so much to you that you go with them during a period when the limits of human existence are laid bare. We tend to fear the unknown, and the journey of caregiving is a journey into the unknown. Courage masters or controls fear without necessarily destroying it. Courage enables caregivers to persevere through a time of loss, hurt, and grief in order to comfort and console a loved one or friend. Courage also creates an opportunity for caregivers to enjoy those blessed moments during which words, glances, and touches will become a source of treasured memories that will console you when these trials are over. Courage empowers you to risk pain in order to honor the gift that your loved one or friend is to you. It seems to me that caregivers are like David confronting Goliath. The story is told in the biblical book I Samuel 17. Young David was a shepherd sent by his father to deliver provisions to his three older brothers serving in King Sauls army in protracted battle with the Philistines. One of the Philistine army is described as a giant dressed like a Homeric warrior who taunted Sauls army to send one man to fight in single combat. The boldness of the challenge threw Saul and his army into panic. David offered to accept the enemy giants challenge. Saul tried to dissuade David citing Davids lack of experience in battle. But David was not deterred. After all, he defended his flock against lions and bears that threatened it. Saul permitted David to proceed. The armor that Saul offered to David was rejected. David chose to fight in his own way. He faced Goliath with only a staff and sling. Goliath felt insulted by such an apparent inferior opponent. But, surely to the surprise of all, Goliath fell when struck by an accurately delivered pebble and then was slain by Davids hand. The shepherd was the champion. Goliath lay dead. I suspect that many of you identify with David. A malevolent giant named dementia, cancer, stroke, renal failure, or trauma has disrupted your life and demanded your attention. You are aware daily of its power and your weakness as your loved one or friend suffers setback and
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loss. Despite having faced other challenges before, none have been quite like the one you face now. You have chosen to engage this giant even though you feel poorly equipped. Your love and loyalty to the person for whom you care does not allow you to flee. Your courage overcomes your fears and emboldens you to share a pilgrimage like none other with potential for unspeakable joy and sorrow. There are victories along the way to be won, celebrated, and remembered, even if the giant ultimately prevails. My effort today to highlight the role of courage in caregiving is not intended to detract from the courage with which people live during their final days. Obituaries that cite their courage surely are a tribute to the character and values of the person who has died. However, I am suggesting that it is similarly appropriate to honor the courage of family and friend caregivers who share the journey, face the challenges, and suffer losses of their own kind. The courage with which you fulfill your role as caregiver typically is not named or heralded, but you and I know how necessary courage is to start and get through another day. You and I know how necessary courage is to conquer your fears. You and I know how necessary courage is to speak honestly with others about what is happening in your life. You and I know how necessary courage is to confess that you are overwhelmed and need others to join you in your service. You and I know how courage is required to perform new tasks that are daunting. You and I know that courage is required to live on when caregiving no longer dictates your day. I look forward to the day when a family or friend caregivers love, loyalty, sacrifice, kindness, patience, strength, gentleness, judgment, wisdom, and courage are identified and praised in an obituary. The presence and care of family and friends during a persons last days are critical for all to have a peaceful goodbye. I encourage all dedicated, self-sacrificing, and self-effacing caregivers to stand tall, even though you are bent by the weight of your responsibilities and service. Some of us know that you, like David, are a champion in this contest with mortal forces. In closing, I quote a prayer by a 20th century theologian named Reinhold Niebuhr. It is commonly referred to as the Serenity Prayer. I think it is a prayer particularly suitable for caregivers. The best known form of the prayer is this, God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference. Amen.
Earl E. Shelp, Ph.D. Interfaith CarePartners 701 N. Post Oak Rd., Ste. 330 Houston, Texas 77024 EShelp@InterfaithCarePartners.org 713-682-5995 www.InterfaithCarePartners.org

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