Chris Schuler opens up about his experience as a caregiver, navigating the challenges of neurodegeneration, particularly his father’s glioblastoma diagnosis. He shares the emotional turmoil, confusion, along with the overwhelming process of navigating the healthcare system. The conversation underscores the importance of raising awareness and understanding of neurodegenerative diseases and their impact on families. We also delve into the problematic nature of the 'standard of care' in oncology, highlighting the critical need to advocate for yourself.
Check out the article Samira referenced towards the end of this episode here.
About our guest
Chris Schuler is a staunch brain cancer awareness advocate. He was the primary caregiver to his late Dad, Donald Schuler, who was diagnosed with GBM in July 2021. He works closely with organizations across the globe, amplifying their critical work and building key relationships to further improve outcomes for patients. He recently finished a year-long consultancy with Cure Brain Cancer Foundation, an Australian non-profit dedicated to improving outcomes in brain cancer. He's currently a Venture Partner with Varia Ventures, working to raise awareness for emerging venture funds dedicated to uncovering and funding innovative discoveries to improve brain health. He also works closely with SageMedic, a precision oncology start-up supporting patients looking for the most effective treatment for cancer. Chris continues on as his Dad's caregiver — caregiver to his life, legacy and memory.
For more on Chris's background, please see his profile on LinkedIn.
Key Moments
33 minutes:
“From that very moment, I went from being a lot of things in my life, being a son, a nephew, a grandson, a friend, eventually an uncle, a husband, a father. Now I am a caregiver. I want to say nothing prepared me for that. Everything prepared me for that. The way I was raised, everything I experienced in my life, every up, every down, every victory, every rejection, everything led to this moment where I am now my dad's caregiver with my mom. I call myself the primary caregiver because there was something she couldn't do for him, and how do you become an advocate? How do you take on what seems insurmountable? And I say to any listeners, you can do it. You have what's in you to do it, to be the very best caregiver, because all you need is one prerequisite to be a caregiver. You need to be able to love. If you can love, you are a caregiver.”
36 minutes:
“The best piece of advice I got was through a mentor through the American Brain Tumor Association. She asked me during my dad's illness, what are you doing to find joy during this journey? And I thought at first that that question was the dumbest question I had ever heard. What joy? What do you mean joy? My father is dying. I am trying to keep him alive. He's having seizures. There's no joy here. And she asked me that question and it reframed how I should be thinking about this and what I could do to find joy. So my advice is something that at first when I heard it I thought it was awful and maybe the caregiver listening today may be able to relate to that, but find joy.”
40 minutes:
“There are some really great resources out there depending on what your need is. If your need is emotional support, grief support. There are support groups tied to national nonprofit organizations and local ones if you need financial assistance. There are so many resources out there, and at times it feels like you can drown in them because there are so many. My advice is pick two or three. Don't go crazy looking for every single answer out there. Pick two or three that look good. And if I can plug a couple, Samira, I will. The American Brain Tumor Association, the Brain Tumor Network are two that stand out immediately as ones that can at least help provide some initial support when something like this happens and give you some tips on where to go next.”
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