Shouldering the Weight: Enduring Challenges and Finding Strength as a Brain Cancer Caregiver
Photo credit: Jackson family
Amber Jackson and her late husband, Tim, worked as nurses during the height of the COVID-19 pandemic in 2020. With three kids and another on the way, this already difficult time became even more complicated. In 2021, during one of Tim's shifts, he began to have a headache and felt foggy. He took a break from this shift and walked with a coworker around the hospital. On this walk, Tim fainted and had a seizure.
At only 43 years old, Tim's MRI revealed three brain tumors, one of which was a Glioblastoma. The surgeon they saw deemed the tumor inoperable, leaving Tim and Amber devastated. After seeking a second opinion at the Ivy Brain Tumor Center at Barrow Neurological Institute, the tumors were removed, and the doctors made it their mission to better Tim's quality of life during his treatment. After fighting for 16 months and reaching many milestones with his family, Tim passed in 2022. Amber Jackson, a GBM brain cancer caregiver, loving wife and mother, is now here to tell her story navigating GBM caretaking and end-of-life care.
This blog post will delve into Amber's journey as she stood by her husband's side. We will explore the coping mechanisms she employed, the resources she accessed, and advice for any other GBM caregivers.
What were some of the most challenging aspects of advocating for your husband's care during his illness, and how did you overcome them?
GBM is different from other cancers because it is in the brain, ultimately affecting so much of who the person is. Tim struggled with processing information. When we would go to doctor's appointments and receive information and develop a care plan, he would not understand any of it. This became increasingly difficult because while he would express his feelings at home when going to the doctor, those feelings would change. There would be situations where the doctor would wonder if a particular treatment was something Tim wanted or if it was something I wanted. This made it challenging to advocate for the direction he wanted to go in. It would take Tim days to finally figure out how to express to me how he felt, only not to be able to process it at the moment.
In retrospect, what do you wish you had known or done differently during your husband's end-of-life care?
My only wish is that I had called upon hospice sooner. My husband did well up until the very end. He could still feed and dress himself and go to the bathroom. I took care of all of his medications, so I didn't think it was necessary. But I could have advocated for hospice care sooner to make him more comfortable.
Did you seek any support or resources during your husband's illness and end-of-life care, and if so, what was helpful to you?
We did not seek specific end-of-life care support. We leaned heavily on family and friends, who were all incredibly supportive.
How did you communicate with your husband's medical team to ensure his care aligned with his wishes?
We were very blessed with an exceptional medical team. Tim made it very apparent from the beginning that he wanted time but also to be able to live during that time fully. So we made sure in all of our appointments to ask questions about how different treatments would affect Tim's daily life.
What advice would you give to other cancer caregivers facing similar challenges, especially advocating for their loved one's care and well-being?
I would advise figuring out if you want time or quality time. Those drive very different treatment plans. Tim ultimately decided he wanted quality time spent with his family and children. He got to a point where he wanted to stop doing therapies and wearing the Optune cap, simply because he just wanted to spend time with his kids.
Can you speak to the importance of self-compassion, self-care during the caregiving process, and any strategies you used to care for yourself and your family?
Giving yourself daily grace is so essential. This is hard and challenging. As caregivers, we are tasked with many important responsibilities that directly apply to our loved ones. There is nothing simple or easy about that. I started attending weekly therapy, which was extremely helpful. And I would bring other people in who could help at times so that I could take a break outside of the home.
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Connect with more brave caregivers by reading our testimonials on our blog. Meet Yuka Tanaka, a California-based Glioblastoma caregiver and viral content creator, who has been healing and sharing her caregiving and grief journey online since her sister Maki was diagnosed with the disease in 2015. Read her full interview here.
**Please note that the information provided on The Glioblastoma Research Organization’s blog is not a substitute for professional medical advice or treatment for specific medical conditions. Always seek the advice of your physician or other qualified healthcare providers with any questions you may have regarding a medical condition or the care of a loved one. The opinions expressed by the interviewee are their own and were submitted with the written consent of Amber Jackson.
