Helping Family Caregivers Find Balance
by William G. Hoy
Jean could see the worry and stress on her best friend’s face as they had coffee together. After a few minutes talking about the pressure of her job, her sense of never “being there” enough for her husband and teenaged daughters, and her constant worry about her widowed mother’s declining health and mobility, Mary began to sob. Jean was unsure what to do—but she knew that her friend had “hit a wall.”
The “wall” Jean recognized in her best friend is one well-known to family caregivers. Perhaps as many as one out of every four families is caring for a parent or other older relative. Sometimes referred to as the “Sandwich Generation,” this unique group of family caregivers are often trying to balance the often-conflicting demands of providing care for the patient, taking care of young children, and managing a career, as well. The word sandwich fits well—these folks are sandwiched, not only between generations but also between many competing demands on their time, energy, and resources.
Family caregiving is taxing on many levels. First, family caregivers often experience guilt at not doing enough. No matter how much care they provide, regardless of how often they put their own schedules and priorities aside to provide care, many feel they still have not done enough. Often, the guilt is magnified by feeling that the caregiver’s own spouse, children, friendships, and career are suffering because of the caregiving demands.
Additionally, family caregiving often magnifies long-standing conflicts and dysfunctions in the family system. One adult child bears the primary responsibility for caregiving while other children saunter in and out at will. Even when others offer to help, the primary caregiver might rebuff their efforts, judging them to be insincere or incompetent for the task. And of course as the only child of her parents, Mary carried the weight of responsibility because, at least in her family, she was the only one for her mom.
One woman with whom I worked in bereavement told me she had moved in to become her dying father’s full-time caregiver. By her own admission, she rarely returned to her own home, her husband, and her teenage children during the seven months of her dad’s illness, not even talking on the phone with them very often. She then seemed mystified that the relationships with her spouse and children were deeply damaged, insisting that she was only “doing her part” and that they should have just understood. So how do we support family caregivers as they provide such life-giving care? These reminders are vital as we seek to support this growing generation of caregivers.
Assess personality variables and family history. Inquiring about other responsibilities can be a great way to start this conversation. People who are trying to manage career, family life, and caregiving can easily become overwhelmed. Asking questions about how he or she has coped with overwhelming challenges in the past can be helpful; I also like to ask about what parts of the caregiving role offers the most fulfillment and the least fulfillment.
Caregivers are certainly not immune to debilitating mental health history, either. In fact, I had one family who wanted to depend heavily on an adult daughter with an active mental health diagnoses, because, in the minds of siblings, it would give their mother a constant companion and would keep their mentally disabled sister “out of trouble!”
Help identify roles. The work of Steven Covey (famous for his book, The Seven Habits of Highly Effective People) is useful here as you invite family caregivers to identify their key roles
(ie “I am a husband, a son, a marketing director, a dad, a Rotary committee chairman, a caregiver to my aging father, a soccer coach, a Sunday School teacher, etc.”) Sometimes helping caregivers list in writing all the roles for which they assume responsibility is a big step in self-understanding; when a caregiver realizes in how many directions he or she is being pulled, it is much easier to manage the stress and competing demands. Encourage him or her to write out what constitutes a “good job” or “success” in each of those roles.
Provide practical help for achieving balance and self-renewal. I challenge caregivers to think about something they can do each week to be renewed in four key areas which I have labeled, the “Four F’s”—fitness, faith, fellows, and faculties. Fitness is fundamental—and I like to talk practically with family caregivers about how they are eating, exercising, and resting. Taxed caregivers often rely heavily on prepared foods—which are generally short on nutrition and long on sugar, fat, and sodium, the excess of which deals a death-blow to energy and fitness. See the “Resource Review” below for a free helpful online tool to help manage these.
Faith is also extremely important. Though some would prefer the word “values” or “personal mission,” the key is reconnecting to one’s belief system. For me, that means making it a point to get to worship weekly and to invest some time in devotional reading and prayer most days. One hospice volunteer coordinator has a knack for accessing volunteers who are Jewish or Seventh-day Adventist to provide respite care for hospice patients whose primary caregivers wanted to be able to attend church on Sunday.
Fellows refers to the family and social network to which one is connected. Sixteenth century poet and philosopher, John Donne said it best when he wrote, “No man is an island entire of itself. . .” Family caregivers need continual connection and interaction with supportive others. In addition to phone calls, emails, and an occasional lunch out, encourage family caregivers to connect with others in creative ways. CaringBridge.com, a web-based interaction site for patients and families facing serious illness, can be a lifeline of connection with concerned friends.
Renewing one’s faculties means continuing to look for mental engagement. Whether it’s in taking time to read the morning paper, enjoying a good biography, or researching a topic of interest on the internet, the information age demands people become lifelong learners.
I echo the thinking of Steven Covey, however, that setting priorities and goals by the week rather than by the day can be helpful for maintaining perspective. If, in the course of a week, we encourage caregivers to do something that renews their fitness, their faith, their fellows, and their faculties, this will seem far less overwhelming to a person who already feels stretched thin.
Recommend good resources. Whether a book to read (such as The Caregiver’s Survival Handbook, or A Bittersweet Season: Caring for Aging Parents - and Ourselves, reviewed below), a website to visit, or a caregiver support group to get involved with, family caregivers need the perspective that can be brought by access to resources. Alienation is one of the most debilitating of caregiver maladies and connection to good resources goes a long way to alleviating this condition.
Though many readers know how to access these resources, organizations such as the Council on Aging, the Alzheimer’s Association, the American Heart Association, and the American Cancer Society have both national and local resources. Help caregivers learn how to access the resources available to them.
The Author: For more than three decades, William G. Hoy has been counseling with the bereaved, supporting the dying and their families, and teaching colleagues how to provide effective care. After a career in congregation, hospice, and educational resource practice, he now holds a full-time teaching appointment as Clinical Professor of Medical Humanities at Baylor University in Waco, Texas.
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