What You Need To Know As A Melanoma Caregiver

Between 2009 – 2019, the number of invasive melanoma cases diagnosed in the U.S. is estimated to have increased by over 40%.(1,2) In 2020 there will be over 100,000 cases of invasive melanoma diagnosed.(3) More people living with melanoma means that more family members and loved ones are serving as caregivers for melanoma patients and survivors. 

If you are caring for a person with melanoma, you are a vital part of that person’s care team. As a caregiver, you may provide both emotional and physical support, such as going with your loved one to appointments, helping with decision making, or coordinating care. You may help with daily activities such as making meals, completing chores, or taking care of kids. You may help administer and track treatments. You may do all of these things.

All of this responsibility and care can feel overwhelming, but information and communication are the keys to coping.

Here are Some Suggestions to Help You Navigate Your Role as a Caregiver

Educate Yourself

Learn as much as you can about melanoma in general and your loved one’s type and stage of melanoma specifically. This website is your best resource: Read the entire About Melanoma section to help you understand your loved one’s diagnosis, prognosis, and treatment possibilities. Help your loved one gather his/her medical records, then organize and read them. Check out AIM’s symposiums, a convenient way to learn about the disease from experts in the field.

Be an Advocate

Attend appointments and establish a relationship with your loved one’s health care team to get clear, accurate information about the diagnosis, treatment, and prognosis. Ask questions when you have them. Stay informed and know what to expect. 

Tip: Carry a Notebook!  At medical appointments, a lot of information is given, so taking notes is a good way to keep track of important details. A notebook can also be used to write down questions for future appointments or for keeping track of side effects your loved one may experience from melanoma treatment. 

Enlist Support

You are not a superhero! No one can do everything. Pushing yourself to the limit will endanger your own health, which will threaten your ability to care for your loved one. Enlist support and then allow people to help. In fact, we recommend you spend some time figuring out how people can help. Dropping off dry cleaning, walking the dog, shopping for groceries, and mailing a package are all easily delegated tasks. Delegate them. Friends and family may offer meals, childcare, or housecleaning. Say yes.

Tip: Instead of sending out complicated group emails, try SignUpGenius or Lotsa Helping Hands. Both are free, online organizational tools that allow you to easily schedule support and communicate requests.

Use Caregiver Resources

As a caregiver, it is important to know that there are organizations that offer myriad resources to help you in your role. Some organizations provide information and advice about caregiving itself. Others offer suggestions on how to take care of your mind and body while you are someone else’s caregiver. The following are resources you might find helpful:

  • Peer Connect is AIM at Melanoma’s peer to peer support program that matches you with another melanoma caregiver who can empathize and provide caregiving tips and valuable insights from their own experience.
  • My Cancer Circle is a free, private support community for caregivers of people facing cancer.
  • CaringBridge is a social network dedicated to helping families and friends communicate with and support loved ones during a health crisis.
  • CancerCare provides free, professional support services for caregivers and loved ones, as well as caregiving information and additional resources.
  • Caregiver Action Network is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
  • The ASCO Answers Guide to Caregiving (PDF) provides information, charts, and forms to help you keep organized.
  • An Orientation to Caregiving (PDF) is a comprehensive handbook for family caregivers of patients with serious illness.
  • The National Caregivers Library is one of the most extensive online libraries for caregivers. Find hundreds of articles, forms, checklists, and more.
  • Family Caregiver Alliance Resources on Caregiving Issues and Strategies offer a wealth of information on practical care strategies, stress relief, available community resources, how to handle family issues, as well as hands-on care.
  • Caregiver.com provides education, support, and guidance for family and professional caregivers. They produce Today’s Caregiver magazine, the first national magazine dedicated to caregivers, the “Fearless Caregiver Conferences,” and a website, which includes topic-specific newsletters, online discussion lists, back issue articles of the magazine, chat rooms and an online store.
  • The National Family Caregivers Association educates, supports, empowers, and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships, and life stages to help transform family caregivers’ lives by removing barriers to health and well-being.
  • Well Spouse Association is dedicated to helping caregivers who are the spouses or partners of a chronically ill or disabled person. The Web site includes information about support groups, chat forums, and opportunities to participate in respite programs.
  • The Rosalynn Carter Institute for Caregiving offers a caregiver corner and includes articles about caring for yourself, finding inner strength, and the importance of respite vacations.
  • Caregiver.org is a nonprofit organization helping family caregivers. The Web site includes links to caregiving tips and guides.
Take Advantage of AIM

AIM is here to help. Remember that you, as a caregiver, are also a melanoma survivor because you, too, are surviving the challenges, responsibilities, and life-changing effects of this disease and its treatment. All of our services—Peer Connect, Ask an Expert, educational symposiums, online Chat—are available to caregivers, too.

References

  1. American Cancer Society. “Cancer Facts and Figures 2009” Atlanta: American Cancer Society; 2009.
  2. American Cancer Society. “Cancer Facts and Figures 2019” Atlanta: American Cancer Society; 2019.
  3. American Cancer Society. “Cancer Facts and Figures 2020” Atlanta: American Cancer Society; 2020.