Caregiving and Loss: Family Needs, Professional Responses
With approximately 25 million family caregivers in this country, one out of four households are providing care for a loved one. It is important for healthcare professionals to understand the unique needs of family caregivers and offer compassionate support. Featuring writings from 13 nationally recognized experts in the field of caregiving and loss, this book is developed in conjunction with HFA’s award-winning Living With Grief series.
Contents
Foreword Rosalynn Carter
Part I:
Caregiving as an Issue: Policy and Programs
Introduction: Nature of Caregiving Carol Levine
Hospice as a Model for Caregiving Marcia Lattanzi-Licht
- Voices: Hoping This Could Be Somebody Else’s Life Elizabeth Halling
- Interview: Fannie Mae’s Elder Care Initiative
Family Caregiving and Loss: The Work/Family Dynamic Myrl Weinberg & Dee Ellison
- Interview: AT&T’s Life Tracks Program
Creating and Energizing Caring Communities Bill Gaventa
- Voices: Jitterbug Brian Alexander
- Programs That Work: CARE-NET
Part II: The Caregiving Experience:
Implications for Professionals
Paraprofessional Workers in Long-Term Care: Dealing with Loss and Bereavement Eileen K. Chichin, Orah K. Burack, & John M. Carter
- Voices: No Fame or Fortune Karen
Cultural Differences: Sensitivities Required for Effective Caring Bernice Catherine Harper, Michon Lartigue, & Kenneth J. Doka
- Programs That Work: Grotta Synagogue HOPE
- Practical Suggestions: What Caregivers Need From Doctors William Lamers
Selfless Soldier Barry Jacobs
- Voices: The Rest of My Life Jim Skofield
Nursing’s Role in Family Caregiver Support Susan Reinhard
- Practical Suggestions: Caregiver Fairs: Support in Action
Self-Care: The Path to Wholeness Beth Witrogen McLeod
- Programs That Work:
- Volunteer Hospices: Talbot Hospice Foundation
Part III:
Grief, Loss, and the End of Life
Grief, Loss, and Caregiving Kenneth J. Doka
- Voices: The Wife: Seven Months Later Lynda Zycherman
Providing Spiritual Support to Family Caregivers Reverend George Blackwell & Rabbi Harold Stern
The Reciprocal Suffering of Caregivers Deborah Sherman
- Programs That Work: Family Caregiver Alliance
Hard Decisions in Hard Times: Helping Families Make Ethical Choices During Prolonged Illness David M. Price
- Programs That Work: Whitman-Walker Clinic
- Voices: I Know Now Desmond Groarke
Part IV: Conclusion
Joyce D. Davidson
Resource List
References
Notes
Foreword
Rosalynn Carter
We are approaching a caregiving crisis in America. Thanks to the wonders of medicine and our knowledge about the causes of many health problems, we survive serious accidents and illnesses, live longer than our ancestors, and encounter problems associated with aging. Now in America, those 85 years old and older are the largest growing segment of our population.
With more people needing care, there are fewer people available to give it or to assist in its delivery. More women are working than ever before. Families are not as closely knit or as large as they once were. And yet family members continue to care for the vast majority of dependent people at home.
Sometimes family caregivers consider their responsibilities a rewarding mission. But for those who have been thrust into the role, it can also be an extremely lonely, stressful, and frustrating responsibility, with tasks that are always demanding. I know this personally, having helped care for my own gravely ill and aging family members.
I also know that being a professional caregiver can be quite stressful. Many are overwhelmed with their work and find themselves exhausted at the end of the day. Their tasks are demanding, too, and take much out of their personal lives.
At the Rosalynn Carter Institute (RCI) at Georgia Southwestern State University, whose mission is helping improve the lives of all caregivers, we have found that caring for a loved one is not an endeavor that should be undertaken alone. Almost all family caregivers, especially those providing the most intense levels of care, report significant physical and emotional stress. Many encounter serious loss of income and job opportunities. To offer the best to their loved ones and still stay strong and healthy, they need to be surrounded by compassionate, responsive assistance from the professionals who work with them. And these professionals must be willing to listen and respond to their needs.
Yet we have found in our research at the RCI that there are often difficulties in the family caregiver/professional relationship. Family caregivers sometimes feel that all the attention is on the ill family member, when they, the caregivers, need cooperation and respect — especially in the areas of communication and information-sharing. At the same time, professionals often feel that they don’t have sufficient time to consult with families regarding how they might assist them. Physicians often don’t realize that simply listening to their problems and concerns can be a huge relief for families in helping to alleviate some of their burdens.
There is much that our health care system should be doing to help caregivers through providing training, support services, and reimbursement for respite care. Local communities should also be providing more help, including spiritual counseling. Ample, carefully targeted supports are particularly crucial for family caregivers of people facing the end of life.
Caregiving at the end of life brings the distinctive responsibility of coping with many kinds of losses. Caregivers begin mourning losses while still helping their loved ones live their final days to the fullest. At the same time, the high economic toll that caring for terminally ill patients can take adds to their emotional as well as their physical stress. Their grief and loss absorb immense energy. And when the role of caregiver has ended, new issues may arise in balancing the challenges of forging a new identity while incorporating the loss.
Hospice plays a special role with caregivers during the end-of-life period, providing compassionate service at many levels— medical, emotional, and spiritual. Also, the hospice philosophy embodies the concept of continued support for the bereaved after the death.
It is fitting that the Hospice Foundation of America has chosen to focus on family needs and professional responses. We must all recognize and celebrate the crucial role of family caregivers in our society, and empower professionals to respond with increased awareness, compassion, and support.
