How to help family members and friends with cancer

Taking care of loved ones or friends with cancer is challenging. It requires patience, flexibility, strength, time and a loving heart. As your loved one with cancer loses some independence during treatment, the usual roles and responsibilities you share may shift. Maintaining the equilibrium of the relationship during this period takes finesse.

Caregivers — spouses, children, grandchildren, siblings, extended family members and friends — suddenly find themselves managing their loved one’s physical, psychological, emotional and spiritual needs. They may also need to help with financial and legal planning. Although demanding, the role of family caregiver is vital to a loved one’s overall well-being, helping them adjust to illness and cope throughout the cancer experience. Many caregivers find that role rewarding.

Here are caregiver tips to help you during the four stages of the cancer process:

1 – Diagnosis
Your role as a caregiver often begins before a diagnosis — when you notice that something is wrong and you encourage your loved one to get it checked out. At the diagnostic meeting, you’ll jump into action mode, providing support and asking questions while both of you process the news. You will begin scheduling medical appointments, helping your loved one adjust their daily responsibilities and making practical plans to manage their condition.

Prepare to:

  • Be present, physically and emotionally. Allow your loved one to share that they’re afraid about what lies ahead. Listen, acknowledge their fears and try to avoid comments such as “everything is going to be fine.” They may just need to feel that they’re not alone.
  • Take written or recorded notes during medical appointments. Listen to the recommendations provided by the oncology team and ask questions. Your loved one may be too shocked or afraid to be fully present during their appointments and will count on you to absorb this information.
  • Rely on social workers, chaplains and other professionals, often available at cancer treatment centers and through community support programs, to provide therapy to your loved one. Don’t tackle that role yourself. You are not expected to have all the answers.
  • Arrange a meeting with the immediate family to discuss the diagnosis and treatment plan and listen to your loved one’s specific wishes or needs. For example, whom do they want informed about the cancer diagnosis and what should be said (with special consideration if young children are involved)? How do they want to communicate with others? Some people with cancer find these choices overwhelming, but others feel empowered by being included in the process. Websites such as CaringBridge.org provide group updates to family and friends, preventing the need to repeat difficult information.
  • Delegate assignments to family members. Decide who will assist with scheduling appointments, providing transportation, attending medical appointments or treatment and helping with urgent needs.
  • Take on new family roles and responsibilities, such as caring for children, managing finances, and meal planning and preparation. Be kind and patient with yourself as you learn new tasks
    and adjust to new roles.
  • Take care of yourself, too. Caregiving is difficult emotionally, physically and mentally; you need to have your own outlets and support. So identify a friend to whom you can turn when you feel overwhelmed or alone. And check out caregiver support group resources where your loved one receives cancer treatment, at local cancer support organizations and online.

2 –Treatment

During this stage, your role as a caregiver shifts to meeting the needs of your loved one as well as the everyday demands of work, home and family life.

Prepare to:

  • Accompany your loved one to chemotherapy and/or radiation appointments, which may consume several hours. The person you’re caring for may require assistance physically and emotionally preparing for appointments, and with transportation.
  • Help your loved one feel comfortable in the recliner or bed during treatments. Get extra pillows or a blanket, make sure they have appealing snacks or meals and distract them from their treatment by carrying on a light conversation, watching TV or playing a game.
  • Bring something to help keep you occupied, such as a book or your laptop, for the periods when your loved one is sleeping. Pre-chemotherapy medications and cancer treatments may make them drowsy. You may also use that time to note the information provided by the nurses or medical team.
  • Provide ongoing caregiving at home. Your loved one may need you to communicate with the medical team about new symptoms or changes in their health. You might also pick up pharmacy prescriptions and maintain a clean and safe home environment.
  • Seek help from others to prevent your own distress and feelings of guilt when you need a break. Cancer does not always follow a smooth schedule and can be exhausting. Solo caregiving is neither healthy nor realistic and may put you at high
    risk for burnout, resentment and becoming ill yourself. Take time to participate
    in activities you enjoy.

Handle paperwork, including:

  • Medical leave: If your loved one is employed, learn about their eligibility for medical leave. Caregivers who are employed may also be eligible for family medical leave; discuss it with your employer.
  • Insurance: Become familiar with medical insurance policies and interact
    with insurance company representatives when needed.
  • Finances: Caregivers often become the designated person to manage the family’s finances and medical bills that pour in when a loved one is ill. Community agencies may be able to offer financial assistance; this information is often available through a social worker where your loved one is receiving cancer treatment.
  • Discuss advance care planning. Review your loved one’s values, goals and wishes, and talk through options relating to their future health care. While important at any time, advance care planning becomes necessary when cancer is diagnosed and treatment begins.
  • Encourage the completion of an advance directive, which ensures that your loved one’s wishes are clearly documented and available to them, the family, caregivers and health care providers. Have these conversations early on so the treatment plan being enacted always matches your loved one’s wishes.

3 – Recurrence

Despite the best efforts of medical providers and treatments such as chemotherapy and radiation, sometimes cancer returns, and it may spread to other parts of the body.

Prepare to:

  • Provide emotional support to the person with cancer, who may be experiencing anger, resentment, sadness and fear about the cancer returning.
  • Allow time to adjust to caregiving once again. It may be difficult after you’ve already resumed your “everyday life” following your loved one’s intense cancer treatments.
  • Help your loved one explore potential treatment options, accompany them to additional appointments and talk to them and the health care team about achievable outcomes.

4 – End of life

During the course of cancer, the disease may continue to progress and it becomes clear that your loved one is approaching the end of life.

Prepare to:

  • Take on minute-to-minute caregiving duties, such as managing medications to alleviate your loved one’s worsening symptoms and assisting with personal care.
  • Experience increased emotional and existential distress along with your loved one.
  • Help your loved one find meaning by examining their life through photographs, videos and reminiscing. Help with their legacy work, such as assisting your loved one with letter-writing.
  • Consider hospice care, a philosophy and model of care that is beneficial both to people with cancer whose life expectancy is six months or less and to their families. The hospice team — a nurse, nursing aide, physician, social worker, chaplain and volunteers — concentrates on managing pain and other physical symptoms and addresses the emotional, social, spiritual and practical needs for you and your loved one. These services are covered by Medicare, Medicaid and most other insurance programs, and are delivered at home or in skilled nursing and assisted-living facilities.

Caring for a loved one with cancer can be emotionally and physically exhausting at times, but many caregivers enjoy the rewards it can bring — finding new meaning and purpose in their own lives, and renewing, reconnecting or deepening relationships. Approach caregiving with patience, humor, humility and love, and not only will you adapt to the challenges that arise during the process, you’ll be proud of the role you played.

Jaime Goldberg, MSW, LCSW, ACHP- SW, serves as a clinical social worker for Cedars-Sinai Supportive Care Medicine. She is a certified hospice and palliative social worker through the National Association of Social Workers and National Hospice and Palliative Care Organization. She speaks nationally about palliative care and hospice topics, and has co-authored two book chapters, one in The Oxford Textbook of Palliative Social Work (T. Altilio and S. Otis-Green, editors).

Lucia J. Kinsey, MSW, LCSW, serves as a clinical social work supervisor of Supportive Care Services at Cedars- Sinai’s Samuel Oschin Comprehensive Cancer Institute. Her clinical career focuses on oncology; she specializes in bone marrow transplant, pediatric hematology-oncology and palliative care. She takes pride in her role providing compassionate and personalized transdisciplinary supportive care services.