October 2, 2006

Young adults face a unique set of challenges when caring for a parent with cancer long distance. While the lives of your friends continue to revolve around careers, dating, friendship, and marriage, you may be worried about how to organize your parents' care, how to provide support, and how to stay involved when time and resources are often limited. Faced with these challenges, people often feel a sense of isolation, sadness, worry, and guilt. However, with the right knowledge and tools, you can manage the situation more easily.

Communication

Communication with your parent is particularly important during an illness. You may feel uncomfortable discussing difficult topics, and you may have the urge to avoid those conversations. However, talking about your mutual worries, concerns, and hopes can actually be a relief. Often, the opposite is true; the person with cancer may feel isolated if he or she is not able to talk openly. Once concerns are voiced, you and your parent can focus on their treatment. If you find it difficult to get started, think about involving a friend of the family or a relative, or even a health-care professional to help facilitate communication. Here are some points to consider when planning for these discussions:

• Make time to discuss plans and concerns about the illness, treatment, and prognosis when there is not a crisis and time is not rushed, if that is possible.
  
  
• Ask your parent about his or her care and treatment wishes, and respect those wishes.
  
  
• Discuss how finances will be handled.
  
  
• Respect your parent's right to retain control of decisions regarding his or her care, but be realistic about potential limitations and strengths.
  
  
• Discuss expectations about visits, responsibility for care, and other matters in the beginning, and agree to review these expectations regularly.
  
  
• If talking in person is difficult, write a letter to express your thoughts.

Organization

Organization is essential for long-distance caregivers. Find out what type of help your parent needs and wants, set up a system to organize that help with him or her, and regularly review how things are working. The following list provides some suggestions to help you begin to organize care:

• Identify a friend, relative, or local health-care professional to assist with arranging caregiving resources, such as respite care, home delivered meals, and home health care. (This person could also be asked to attend doctors' appointments, tape the appointments, and send them to you, so you stay in the loop.)
  
  
• Be sure the doctor's office has your full contact information included as part of your parent's file. If you will be the person making medical decisions in the event of an emergency, request to have a phone conversation with your parent's doctor to review the treatment plan. (The doctor will need permission from your parent to do this.)
  
  
• Ask a local friend of your parent's to help you organize a support network of people your parent can rely on for assistance with household tasks, transportation to doctors' appointments, and other needs.
  
  
• Create a list of contact information for important local health-care professionals, caregivers, and people you can contact in case of an emergency.
  
  
• Make copies of your parent's legal documents, such as Advance Directives, Power of Attorney for Health Care, and Power of Attorney for Property, health insurance cards, and bank documents.
  
  
• Investigate possible travel arrangements before you need them, such as how to cash in frequent flyer miles for tickets. You may also want to sign up for travel websites and airline e-mail specials, to prepare for arranged or emergency visits.
  
  
• Ask your human resources department about benefits that might be helpful to you, such as the Family and Medical Leave Act (FMLA), and Employee Assistance Program (EAP).

Creative ways to stay connected

Use high-tech and low-tech strategies to keep in touch, maintain an emotional connection, and monitor your parent's progress.

• Exchange photos by mail and online, or use cell phones with photo capacity to take and send snapshots.
  
  
• Set up a daily or weekly time to e-mail updates to family and friends, instead of calling each person. Or, keep family members and friends in the loop by setting up a webpage for the purpose of posting updates on your parent's medical care and progress. Websites that are currently offering this interactive tool include www.CarePages.com, www.caringbridge.org, MyLifeLine.org, and www.thestatus.com. Many hospitals and cancer centers are also offering this option to patients.
  
  
• Send short, regular notes to your parent on postcards.
  
  
• Exchange videotapes and audiotapes.
  
  
• Use a computer with video capacity to talk and see each other in real time.
  
  
• Use a personal digital assistant (PDA) to send messages while away.

Tips for coping

Staying healthy and getting support is important for caregivers. Recognize your body's unique signs of fatigue and stress, such as changes in sleeping or eating habits, difficulty concentrating, headaches, gastrointestinal distress, and worries that interfere with your ability to go to work or participate in supportive social interactions. Maintaining your own physical and emotional health will help you lend strength to your parent.

• Get regular exercise.
  
  
• Get regular physical checkups.
  
  
• Set realistic priorities for your time.
  
  
• Join an online or in-person support group.
  
  
• While you may decide to scale back your schedule, try to maintain social contacts and activities with supportive friends as often as possible.
  
  
• Get professional help if your emotions are so overwhelming that they interfere with your ability to function professionally or personally.
  
  
• Say yes to help.

Additional resources

CancerCare: Caring Advice for Caregivers: How Can You Help Yourself? (download PDF)

CancerCare: Online support group for caregivers ages 20-40

National Cancer Institute (NCI): When Someone You Love Has Advanced Cancer: Support for Caregivers

National Coalition for Cancer Survivorship (NCCS): Cancer Survival Toolbox

National Family Caregivers Association (NFCA)

Family Caregiver Alliance: Handbook for Long-Distance Caregivers

National Alliance for Caregiving

Family Caregiving 101

Gilda's Club Worldwide

The Wellness Community

More Information

How Caregivers Can Take Care of Themselves

Tips on Caregiving

Long-Distance Caregiving