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.
Key Highlights:
- Self-advocacy is critical in getting the care that’s best for you, so ask questions, and get involved. Your healthcare team cares for you and wants to see you back on your feet, but no one can care more than you do.
- Caregivers need to look after themselves, too. It can feel like there’s no room for yourself, but you must find joy. Find joy so that you can cherish whoever is under your care.
- The role of a caregiver is both rewarding and demanding. Being an advocate for a loved one is a necessary responsibility because the standard is not always the best care you can receive for your individual case.
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:
At 31 minutes 22 seconds: “So that word standard, we all interpret in a different way, right? Although the standard might make sense in some instances, it may not make sense in many other instances. Certainly I don't strive and seek for standard experiences in my life. I don't want to go on a standard vacation. My wife will agree there that we don't want a standard vacation, we want an exceptional vacation… So here we are here in this word standard. And immediately I'm thinking this sounds like it's bare minimum. It sounds like we got to do a standard. What is the standard of care? And the doctor begins to explain what a standard of care is to what you just said – it's the way we treat this disease. Regardless of who you are, regardless that your name is Don, regardless that you're 5'11", regardless that you're from New York, regardless of your ancestry that is German-Irish, regardless of any of that stuff, regardless of your... Now, he's not saying this, but regardless of your tumor type, regardless of the genomics of that tumor, regardless of how that tumor may or may not interact with the drugs that we plan on poisoning you with, regardless of all that, standard of care.”
At 33 minutes and 18 seconds: “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.”
At 36 minutes and 4 seconds: “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.”
At 39 minutes 42 seconds: “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.”
Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
YouTube Chapters:
0:00-3:19 A little about Chris
3:19-28:10 The journey to Chris’s dad’s glioblastoma diagnosis
28:11-32:52 The inherent issues with standard of care in the cancer space
32:53-35:28 Becoming a caregiver
35:29-42:35 Rapid fire Q&A
42:36-45:32 Finding calm waters and wrap up
YouTube Tags:
Manta Cares, cancer, cancer sucks, neurodegeneration, glioblastoma, brain cancer, healthcare advocacy, patient experience, diagnosis journey, healthcare system, neurosurgeon, awareness, brain cancer, glioblastoma, caregiving, patient advocacy, standard of care, family dynamics, healthcare communication
Links:
YouTube: https://youtu.be/JN0MG77SrwM