Cancer Caregiving: Rewarding, Fulfilling, Frustrating, Burdensome, or Spiritually Uplifting?

As I began writing this article, I started to think about the many caregivers I have known and what they have shared with me about their experiences as caregivers. The myriad of descriptors they used are only a few of the words in the title of this article. One caregiver said she had never had a negative experience; however, the majority felt all of these terms could describe their feelings at any point along the cancer care continuum.

Who is a cancer caregiver?

There is no universally accepted definition of “caregiver.” A person who cares for the physical, emotional, and practical needs of another with cancer can be called an informal caregiver, a family caregiver, or simply, a caregiver. Regardless of the title they are given, caregivers face many challenges as they provide physical, emotional, spiritual, or logistical care.  Caregivers are a diverse population with various cultural backgrounds. Caregiving knows no boundaries when it comes to ethnicity, language, financial status, geographic location (rural vs. urban), educational level, personal caregiver health, or accessibility of medical or cancer centers.

Challenges of Caregiving

Two shifts in particular in the paradigm of cancer care are increasing the challenges of caregiving. With the shift away from inpatient treatment, complex cancer treatments are often being administered in fast-track clinics, infusion centers, or outpatient clinics. It is the caregiver who monitors many of the treatment effects once the cancer survivor returns home. During the treatment phase, caregivers are expected to manage medication schedules, learn about possible side effects, manage symptoms, recognize emergency situations, provide nutritional support, make medical decisions, and perform a variety of activities of daily living (assistance with feeding, dressing, bathing, etc.). These caregiving tasks can obviously increase exponentially at the end of life.

Secondly, albeit it great news, cancer survivors are living much longer and leading productive lives. For some cancer survivors and their caregivers however; this means recognition and management of long-term effects. These effects may range from minor and intermittent to more severe and chronic, thus requiring additional education and care.

What are the Concerns and Needs of Cancer Caregivers?

Education, which has been shown to alleviate anxiety, is one of the greatest needs expressed by caregivers. In addition to needing information about the diagnosis, treatment, and managing the effects of cancer treatment at home, caregivers have expressed specific concerns about managing pain and other symptoms, recognition of potentially serious problems in their cancer survivor, and knowing when to call the doctor or nurse. Additional education is also needed for them to adequately and safely perform such skills as giving injections, assisting with feedings, or wound care management.

Meeting the physical needs of their cancer survivor can increase the emotional strain and stress experienced by caregivers. They do not always know to whom they can turn when unexpected emotions like anger, guilt, frustration, or fear surface. It is not uncommon to become frustrated with the many tasks of caregiving and then to feel guilty for becoming angry or frustrated. Caregivers often juggle multiple roles (spouse, parent, daughter/son, employee, friend) and can easily become overwhelmed by trying to keep up the pre-caregiver lifestyle. Fear can be generated by feelings of inadequacy, lack of knowledge, or uncertainty about the treatment’s effectiveness. These feelings are normal.

Other caregivers may be facing their own physical problems or personal health issues as they care for a loved one. Complaints of fatigue sleep disturbances, poor nutrition, and less time for exercise are common. Some caregivers suffer from illnesses such as heart disease, diabetes, respiratory illnesses, or arthritis, just to name a few. This is particularly true in the aging caregiver where it has been estimated that over 50% of aging Americans suffer from two chronic health conditions.

A group of caregivers that face special challenges are those who live in medically underserved communities or rural areas. They are often “cut-off” from the larger cancer centers by distance and face transportation and financial difficulties in accessing the same resources available to other caregivers.

What Can Caregivers Do to Help Themselves?

The following is a brief summary of tips for caregivers. More details can be located in the resourcesfollowing the summary.

Educate Yourself

First, ask your cancer survivor for permission and then obtain as much information as possible about their treatment. Clarify with the health care professionals exactly what is expected of you. Write down important names and phone numbers. Take any skills classes offered (many are offered via DVDs, podcasts, webinars). Ask the nurse for any pamphlets or fact sheets available.

Explore the caregiver websites and booklets, some of which are listed in this article, for information about employment and legal issues, financial assistance, transportation help, prescription assistance, and accessing federal and state programs.

 Take Care of Your Emotional Health

Addressing your own emotional support needs will help you support those of your cancer survivor. Join a caregiver support group, online or in person. Know your limitations and recognize that you cannot be all things to all people. Do not be afraid to ask others for help. Take time out for yourself, even if you can find only 10 minutes in the day to meditate, sit quietly, read, listen to soothing music, or just relax. Seek counseling if you feel you are unable to handle your emotions or cannot find a support group. Develop or foster spirituality or a religious connection.

Take Care of Your Physical Self

Remain active and do some form of exercise daily, even if for 15 minutes. Eat nutritious meals. Rest when you need to and get enough sleep. Keep up with your own health check-ups, appointments, and medications.

Caregiver Resources

The Internet is inundated with websites and social media describing the problems of caregivers, offering advice, and directing them to more websites. Caregivers generally have limited time to search for information; therefore, the resources listed in this article are some of the more comprehensive ones that are from nonprofit organizations or government-based.

Cancer and Treatment

CancerCare    (1-800-813-HOPE)is a nonprofit organization that provides free support services for anyone affected by cancer, including caregivers. The Connect® Education workshops, which are online.

National Cancer Institute (NCI) 1-800-4CANCER  provides comprehensive information on cancer prevention, diagnosis, treatment, research, clinical trials, and news for laypersons and healthcare professionals.

Caregivers: Booklets/Pamphlets (free, download or print)

Caring for Your Loved One with Cancer is written for caregivers by oncology social workers. The booklet provides tips for caregivers about caring for themselves, coping, and locating support.

Caregiver Toolbox: Taking Care of Yourself

describes common feelings/emotions experienced by caregivers and provides tips for managing them.

Care for the Family Caregiver: A Place to Start provides information about caregiver training, legal and financial concerns, navigating the healthcare maze, caregiver health, and other resources.

The Family Caregiving Alliance – National Center on Caregiving provides information about caregiver issues and strategies, legal issues, accessing resources, and policy updates.

Web Sites

Strength for Caring – a Place for Caregiver is comprehensive website providing family caregivers with information, an on-line community, and support. The site includes advice about caring for yourself, caring for others, connecting with other caregivers, and a resource center.

Rural Caregivers   is a comprehensive site of information valuable to those who live outside of large metropolitan areas or provide caregiving services from a long distance. The site lists resources materials, organizations, support services, and caregiver information by state and region.

Books for Caregivers

“Breast Cancer Husband: How to Help Your Wife (and Yourself) during Diagnosis, Treatment, and Beyond” by Marc Silver

Marc Silver used his own story, the stories of others, and humor in describing his journey as a caregiver to his wife during her breast cancer treatment.

“Cancer Caregiving A to Z: An At-Home Guide for Patients & Families” American Cancer Society

This is a quick reference book listing a range of topics, checklists, and  “what-to-do-if” guides.

“Cancer Journey: A Caregiver’s View from the Backseat” By Cynthia Zahm Siegfried

This book is written from the caregiver’s perspective. She uses faith, honesty, painful emotions, fear, and even a little humor, in describing her role as a cancer caregiver.

“Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life” by Maggie Callanan

The author discusses the role of hope, the impact of culture, and dealing with difficult decisions that often face caregivers and patients at the end of life.

Category: Experts Speak

Tags: Breast Cancer, cancer, cancer survivor, caregiver support group, Caregivers, logistical care, long-term effects, nutritional support, outpatient clinics, Rural Caregivers