Experience of Caregiving: Marathon or Sprint

Applying the term caregiver to oneself tends to be difficult, especially for a spouse who sees his or her support solely in terms of that relationship. Whatever support is required is understood as part of fulfilling the marital vows. Accepting the label of caregiver may feel like a betrayal of vows. Identifying with the term caregiver may acknowledge that something of significance has changed which may portend a more ominous change that is denied because it is too painful to contemplate. People usually drift into the role of caregiver as they respond to or compensate for losses of a loved one. Few have had good role model(s) or life experiences that prepare them for the care required. Care has become commercialized and professionalized in many respects, even though most basic tasks can be and are performed by laypeople. The caregiving journey begins without much fanfare or experience, if any, and caregivers typically do not who or how to ask for advice or help. Once caregiving begins, typically it is a journey that is taken alone, keeping private and secret ones experiences and thoughts for as long as possible, perhaps not even communicating with a loved one feelings about what is happening. People cry in secret and face the public with a stiff upper lip. There is no the way to be a caregiver, only a way. No true expert, rule book, or manual exists that can guide one through the journey. All are students and teachers, typically doing the best they can. Each caregiving journey is unique, but there may be some characteristics that are similar or common to others. Although one may feel like a pioneer, there are fellow travelers on this road who, like one, are facing comparable challenges. Caregiving in most instances is a marathon, not a sprint. Since most have not been trained for either in advance, people resort to on-the-job training without a coach. Most caregiving tasks begin with little things that increase in frequency or intensity over time. They may be minimally disruptive at first and manageable, but they may become consuming before the journey is over. Caregivers may feel as if everything is out of their control, and that is when they feel most helpless, vulnerable, and hopeless. By understanding the experience of family caregivers, Team members may be better able

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to provide practical support and suggestions about how a caregiving journey may be more satisfying. Caregivers tend to focus on the tasks, interpersonal stresses, or negative feelings, the little things, and overlook the main thing the relationship and all that makes it meaningful. The little things, the tasks, stresses, and feelings, are metaphorical mole hills which may be experienced as distasteful, unpleasant, unwelcome, disruptive, and incredibly intrusive into ones life plan or script for this phase of ones life. Over time, these mole hills may multiply and the caregiving road becomes very bumpy. They toss caregivers to and fro as they attempt to tend to the range of needs of a loved one. They may become such a distraction or preoccupation that caregivers neglect to care for themselves which, in the end, results in worse care for a loved one due to physical fatigue, medical problems, emotional distress, disrupted family and social relationships that are not addressed. At a time when they would benefit from the presence and assistance of others, they may be grieving the losses that they are experiencing, and grief tends to isolate a person from others. Nevertheless, caregivers strive mightily to do it right, but sometimes fall short and then feel badly or guilty. It is not surprising that everyone involved may experience a range of emotions, some of which surprise a caregiver because one never thought that he or she could feel that way. Danger is that caregivers concentrate on these negative feelings about and interpretations of what they are experiencing, and lose sight of the positive or most important aspects of the journey the relationship and the love that generates the desire and capacity to meet anothers needs. There may be discoveries along the way that deepen ones commitment, strengthen ones relationship, or create an unexpected joy. The challenge is to develop strategies that protect and preserve a caregivers own welfare and well-being while meeting the support needs of a loved one. Stated differently, how can one separate the less from the more important aspects of caregiving? If this can be achieved, then perhaps the experience will be more satisfying and remembered with greater peace. Caregiving Team members can be a resource to caregivers who are growing weary in their role. Team members can have empathy with them, imagining how you would feel or cope if you were in a care partners shoes. There are coping strategies that team members may suggest to caregivers that may help them to complete the marathon of long term care. Helping caregivers to admit that
701 N. Post Oak Rd., Ste. 330, Houston, TX 77024 | 713-682-5995 info@interfaithcarepartners.org | www.interfaithcarepartners.org

they are fallible and limited in a situation that is beyond their total control is a beginning point. Caregivers are not supermen and superwomen. They are flawed people who are coping with the assaults that life sometimes brings. Here are topics that team members may discuss with caregivers that may help to empower them to fulfill their role as well and as long as they would like. Develop a sense of humor and learn to accept and laugh about not being perfect. Discuss with a care recipient ones feelings of uncertainty, dread, and grief. Communication and honesty are keys to healthy coping. Challenges can be met more easily together than alone. Agree to work together to not let little things become big things that obscure what is important. Work out strategies and procedures to address matters openly and honestly all along the way. Clarify what is most important to ones life and relationship with a loved one, and imagine how that will be affected by the current situation. Develop strategies jointly to protect and preserve what is most important. To the extent one can, create a support plan that contributes to this goal, but be prepared to revise it as the situation changes. Consider giving up or sacrificing lesser goals or pursuits when they distract from or compromise the preservation of what is of primary importance. A caregiver and care recipient collaboratively may set realistic goals that are appropriate for stages along the journey. Be flexible and adjust them as necessary. As incremental goals are realized, ones confidence and competence to meet future demands may increase. Caregivers may be encouraged to invite others to share the care which may lessen tension, fatigue, and frustration. By not doing it all or doing it alone, ones ability increases to not allow mole hills become mountains. Caregivers should accept that they cannot determine the ultimate outcome or fix a loved ones problem. Identify what one can and cannot control. Do not assure failure by setting the bar too high for oneself. Caregivers ought not blame themselves or feel guilty about adverse outcomes beyond their control. Feel good about doing well what one can. Do not feel guilty if there are some things one cannot do. Above all, to the extent possible, maintain open and honest communication with a loved one.

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Caregivers should strive to understand caregiving as a journey with peaks and valleys, joys and sorrows, mole hills and mountains. Be open-minded and flexible in identifying and responding to new challenges, some of which may have been foreseen and others not. Remember to concentrate or focus on what is most important, and be quick to let go of what is not. Caregivers should identify what only they can provide and be willing to let others share in the rest. It is wise to preserve ones energy and commitment for these critical tasks which cannot be performed by anyone else. Caregivers should learn how to practice forgiveness. They should strive to relinquish their anger about what is happening and forgive themselves as generously as they forgive others who fall short of an ideal. Learn the virtue of patience. Much is out of ones control. Caregiving in many cases is a marathon. Savor the good moments and dont dwell on the bad. One cannot be certain how long the journey will be, but strive to derive as much joy and peace from it as possible. Learn how to be grateful and to express gratitude. One may be surprised during this journey about how meaningful simple acts of kindness will be to oneself and a loved one. Caregivers should work toward keeping the lines of communication open with a loved one, family members, and intimate friends. These people are lifelines who may make a big difference in how mole hills and mountains are experienced. To the extent possible, everyone concerned should work toward achieving what has been identified as most important in the caregiving journey. Questions for discussion by a Caregiving Team. What has been your experience in caring for family members? How did your feelings compare to those of caregivers that you presently support or have supported in the past? What lessons did you learn or insights did you gain about yourself during the course of your caregiving? If you had to use one word to describe the experience, what would it be? What words do you think caregivers served by the team might use or have used?
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How can we introduce the suggestions for caregivers in this module to caregivers in a sensitive, respectful, and nurturing manner? Related Modules: Emotional Support of Care Partners Practical Care Overcoming Resistance to Care Caregiving Principal Gift of Care Listening Skills: Generous Listening Understanding Communication

Written by Earl Shelp, Ph.D.

701 N. Post Oak Rd., Ste. 330, Houston, TX 77024 | 713-682-5995 info@interfaithcarepartners.org | www.interfaithcarepartners.org