Tips from kidney cancer caregivers

In honor of National Family Caregivers Month, the KCA is sharing some insights from our archives that still apply today. These tips are excerpted from the KCA’s 2012 publication We Have Kidney Cancer: Survivors Stories.

Joyce’s family was impacted by a hereditary disorder called von Hippel-Lindau (VHL) disease, one of the genetic factors that is linked to an increased risk of developing kidney cancer. Her husband died of complications, including kidney cancer, related to VHL in 1977 and her son was diagnosed with VHL and kidney cancer at age 15.

As a caregiver for husband and son, Joyce, had to cope with the emotional burden of losing a husband to kidney cancer and the continuing struggle of helping a son who faced major health burdens due to his VHL, including losing sight in both eyes and a kidney transplant. She also discovered the importance of learning as much about her husband’s and son’s conditions and treatment options as possible.

Tips from Joyce:

• Remember whose body this is. You can do research and provide perspective, and voice your opinion, but the owner of the body makes the final decision.
• When caring for your child, remember that they will soon turn 18 or 21 and be in charge. Are you training your child to be his or her own best advocate? Are you prepared to turn over control?
• It is hard for people ‘in the hot seat’ to absorb all the difficult information in a doctor’s visit. You can play an invaluable role by listening, taking notes, and helping the patient review the information later, to absorb it in smaller doses over time.

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María Teresa’s father was diagnosed with kidney cancer. While she had recently moved to Illinois with her family after living in Europe, her father and mother still lived in her native Bogota, Colombia. María Teresa took on information gathering and research duties for the family as they tried to learn everything they could about the disease. Though her father died not long after his diagnosis, María Teresa and her family remained active in the kidney cancer community.

Tips from María Teresa

• Take one step at a time. Worry about today only – not yesterday or tomorrow.
• Visit the Kidney Cancer Association website right away, and read the book We Have Kidney Cancer.
• Consider joining an online chat to connect with other patients and caregivers. You will be amazed by the relationships you build.