When lighting strikes 3 times: Mother of 3 children with brain tumors shares insights on being a caregiver

Lightning StrikingWith three children diagnosed with brain tumors in their 20’s, Catherine Stryker is a veteran caregiver and a remarkable woman. One daughter had an acoustic neuroma, Catherine’s son had an oligoastrocytoma that became a glioblastoma from which he died after a 17-year battle, and her other daughter has an anaplastic astrocytoma. In addition, Catherine works through hospitals and non-profit groups to help other caregivers learn to cope and manage through every stage of the brain tumor disease.

I recently had the opportunity to catch up with Catherine and ask her about her experiences so that she can pass along some of her knowledge and wisdom:

  1. How did it feel when you were faced with your children’s brain tumor diagnoses?
    When we found out about my first daughter’s brain tumor it was devastating. Not knowing about brain tumors, we were in shock for at least six months. Even through surgery. Then we settled back down and dealt with it. When our other children were diagnosed, we turned off all emotions so that we could stay focused on what to do
  2. How did caregiving affect your health and overall well-being?
    I was familiar with being a caregiver because it had been my profession, so I knew it was important to stay healthy in mind and body. I was very task oriented and got things done. At times I felt helpless and unable to do anything, and it resulted in bad indigestion. I reached out to my doctor and he gave me some medicine which helped. I also started taking time for myself like going to a movie, or just taking a day off from caregiving. This helped tremendously.
  3. How did you evaluate treatment options for your family members?
    I learned a major lesson: Make sure you get a second opinion at an established brain tumor center. My son was diagnosed in Santa Barbara and the neurosurgeon said he could not operate due to the tumor location. He just had radiation and no surgery. When his seizures worsened, we went to UC San Francisco, which has a team that specializes in brain tumors and it made a huge difference in our treatment course and results.Being educated provides me strength as a caregiver. When my kids were diagnosed I learned about the non-profit groups that focus on brain tumor patients and their families. I relied heavily on them for information and support. I went to conferences to learn about new research and treatments. Even as my kids are surviving, I stay active in the field and continue to learn.
  4. What are three things you have learned about being a caregiver?a. Be Patient – Following surgery, everything slows down and multitasking becomes a major challenge. I had to learn to give them one task at a time.b. Stay Positive – My kids appreciate that I never let them feel sorry for themselves. I looked for new ways for their best quality of life. Knowing fatigue would be a problem, I encouraged them to slow down, eat healthy, and take a nap. Also, I tell them to look out for signs and symptoms that don’t feel right and speak up about it right away.

    c. Don’t lock into statistics – Statistics such as “You have five years to live,” or “You will never drive again.” My youngest daughter was told she had three months to live and she is now alive for over a decade. So much for statistics!

About the Author: Mary Lovely Ph.D. RN, CNRNs