Cancer Caregivers Must Not Be Forgotten – 4 Ways to Support Them

A cancer diagnosis affects not only patients but their entire family and close friends. Cancer is therefore also considered a family disease . The person providing care and assuming activities and responsibilities is usually a relative or close friend.

They are called companions or primary caregivers . Being alongside the patient all day, caregivers communicate with their social circle and healthcare team throughout. As responsibilities grow, care can become demanding, one-sided, dependent, intense and prolonged. Added to personal obligations, this can create caregiver burden and an ongoing cycle. Becoming a caregiver is often neither chosen nor planned. Caregivers may need support just as patients do!

-Related Topic: The moment time stands still: RECEIVING A CANCER DIAGNOSIS!

Support can be considered under the following headings.

1. Communication
   When illness is identified, relatives or patients may be first to learn or seek information. Some patients want to know everything; others avoid involvement and take longer to accept illness. Communication between caregiver, patient and family also plays a serious role in continuing care.
   
   Patients and caregivers should openly share sadness, hopes and needs after cancer enters their lives. Each family is unique in its perceptions, problem-solving, reactions to progression and communication with staff. Defining and explaining roles helps. Encouraging communication and mutual support fosters sincere dialogue throughout the family.
   
   Communication should be open, direct and meaningful. Caregivers and relatives should avoid criticizing one another and receive support to sustain healthy communication.
   
   -Related Topic: How should patients, families and physicians communicate?

2. Considering family dynamics
   
   Most families have defined roles: coordinating children, cleaning, maintaining the home or car, and paying bills. Illness disrupts this cycle as the caregiver takes on a difficult, important role caring for the sick member.
   
   Changing cultural and economic conditions make the role harder. Responsibilities may include bathing, daily housework, technical tasks such as changing ostomy bags, and transport for emergencies or scheduled checks. Relatives can help by reorganizing their lives, and close friends can contribute too.
   
   -Related Topic: Families caring for cancer patients struggle more than other patients' relatives

3. Caregivers' well-being
   
   Providing necessary attention and support throughout prolonged cancer, helping with daily activities and other needs, becomes a full-time job . Weekly care reportedly averages over 40 hours, sometimes resulting in unemployment. Financial support from relatives may be needed.
   
   Families and caregivers seek meaning while coping. Understanding the illness properly can improve coping and quality of life. Spiritual beliefs may be strengthened against uncertainty and future anxiety.
   
   Caregivers often neglect their own needs and feelings. Time spent caring leaves insufficient time for personal life and responsibilities. Recognizing this and protecting their health matters both for themselves and their care duties. They should stay active, eat carefully, sleep and rest enough, attend checks, take breaks, recognize limits, keep a diary, contact relatives and friends, develop spirituality, seek professional emotional support, join caregiver groups, socialize, learn about care programs and know their rights, including legal leave rights as caregivers.

4. Professional support
   
   Current data suggest caregivers need information about emotional/spiritual, physical and professional supportive cancer care. They also need social support, anticipation, interpretation, decision-making, advocacy, coordination and problem-solving skills. Healthcare professionals — the treating doctor, psychiatrist, psychologist, oncology nurseor social support specialist — can provide these.

Is financial support available for caregivers in our country?

Anyone in our country caring at home for a patient with a severe disability report can apply for home-care allowance. Those caring for people unable to live or meet needs independently may receive it if they have no other income. Eligibility requires disability of 50 percent or above and "yes" in the report's "severely disabled" section, determined by a hospital board. Payment goes to the caregiver, not the elderly, sick or needy person. Applications go to provincial or district Family and Social Policies directorates. First obtain application documents from treasury/finance offices under governorates or district governors, then need-assessment decisions from provincial or district administrative boards. Documents go to the SGK Directorate General of Non-Contributory Payments, which reviews and decides eligibility.

United States National Cancer Institute Caregiver Bill of Rights

1. I have the right to care for myself (this is not selfish; caring well for myself enables better patient care).
2. I have the right to seek help (I know my strength has limits).
3. I have the right to maintain other parts of my life and do things just for myself.
4. I have the right to anger, depression and expressing my struggles and feelings.
5. I have the right to reject attempts by the patient or others to make me feel guilty or angry.
6. I have the right to feedback about my care, forgiveness, acceptance, love, attachment and being valued.
7. I have the right to be proud of what I can do and applaud meeting my patient's needs.
8. I have the right to preserve individuality and a life sustaining me when full-time help is no longer needed.

Helping families through family-centered care is integral to oncology.

Related Topics

How should communication be handled at the end of life in cancer? Should death be discussed?

Signs that a person with cancer is nearing the end of life and recommendations for families

6 suggestions for relatives caring for cancer patients