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Grief Perspectives
Scholar's Corner
Resource Review
Your Professional Library

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 often short on nutrition and long on sugar, fat, and sodium, the excess of which deals a death-blow to energy and fitness.
 
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) 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.
 
National, state/provincial, and local organizations such as those dedicated to aging services, Alzheimer’s disease, cancer, and heart disease generally provide outstanding groups and published materials. Help caregivers learn how to access the resources available to them through providing website catalogs and links, phone numbers, and even specific information about caregiver support groups in your community.
 

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 where he has taught since 2012. His most recent book is Bereavement Groups and the Role of Social Support: Bridging Theory, Research, and Practice (Routledge, 2016).


Resource Review
Will Return Next Month
Your Professional Library
The Thirty-Six Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss (Sixth edition) by Nancy L. Mace and Peter V. Rabins. (Johns Hopkins University Press, 2017, 416pp, US $ 19.95).
 
Through five editions, The 36-Hour Day has been an essential resource for families who love and care for people with Alzheimer disease. Whether a person has Alzheimer disease or another form of dementia, he or she will face a host of problems. The 36-Hour Day will help family members and caregivers address these challenges and simultaneously cope with their own emotions and needs.
 
Featuring useful takeaway messages and informed by recent research into the causes of and the search for therapies to prevent or cure dementia, this edition includes new information on:
 
• devices to make life simpler and safer for people who have dementia
• strategies for delaying behavioral and neuropsychiatric symptoms
• changes in Medicare and other health care insurance laws
• palliative care, hospice care, durable power of attorney, and
       guardianship
• dementia due to traumatic brain injury
• choosing a residential care facility
• support groups for caregivers, friends, and family members
 
The central idea underlying the book―that much can be done to improve the lives of people with dementia and of those caring for them―remains the same. The 36-Hour Day is the definitive dementia care guide.
Research that Matters
Bedini, L.A., Labban, J.D., Gladwell, N.J., & Dudley, W.N. (2018). The effects of leisure on stress and health of family caregivers. International Journal of Stress Management, 25(S1), 43-55. doi:10.1037/str0000072
 
For decades, it has been well documented in enumerable research studies that the availability and use of leisure time has a positive impact on reducing stress; this fact is not only born out in evidence but in fact, follows “common sense” and seems intuitively correct. Nevertheless, “informal caregivers,” most often the spouses and adult children of seriously ill individuals, are widely known to suffer from a lack of personal time to pursue such things as leisure activities.
 
Following a thorough review of the peer-reviewed literature, this group of researchers from University of North Carolina (Greensboro) analyzed results from a broadly representative sample of informal caregivers. Three-quarters of the 239 respondents were female and approximately half were college educated. The respondents represented all 50 U.S. states and nearly half gave up their job when they became a caregiver.
 
While confirming much of what is conventional wisdom, the breadth of this study lends credibility to the importance of caregiving professionals helping family caregivers make a workable plan for attaining leisure time and activities. These activities, including such things as worship attendance, hobbies, shopping, relational interaction with others, participating in leisure travel, and physical activity/exercise seem to have a positive effect. Specifically, results indicated that reductions in perceived stress were significantly predicted by higher levels of satisfaction with the quality of the leisure experience but not by the actual levels of leisure participation.
 
Access to the full text of this article is available by registering at ResearchGate.
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