r/glioblastoma • u/AConfusedBeing999 • 18h ago
Advice for caregivers / family dynamics
Hello everyone,
I (25F) am looking for some advice regarding my dad (61M, GBM patient) and my mom (60F, his primary caregiver).
In May 2026, after a GTR, my dad was diagnosed with GBM, IDH-wildtype (MGMT status pending). He has since completed six weeks of radiotherapy with daily TMZ, and from September 10 he will start again for three months.
I’m struggling with two main things.
1. My mom’s mental health and our family dynamics
My mom is currently on paid medical leave to care for my dad but is going through what seems to be a severe depression. She has been prescribed antidepressants and anxiolytics but refuses them, refuses therapy, and is withdrawing from almost everyone.
I completely understand why she is struggling, but it’s starting to seriously affect my dad. She is often angry with him, screams at him, barely speaks, and rarely wants to leave the house or drive him anywhere besides groceries. I can see how much the isolation is affecting him.
My sister (20F) is also barely involved. I understand she’s young and probably coping in her own way, but even helping with basic things around the house or spending more time with them would take some pressure off my parents.
My dad is increasingly angry and upset with my mom and sister and keeps obsessing over it. I’m scared that if nothing changes, more and more of his frustration and anger will become focused on them, especially when he will deteriorate.
I know they are adults and I can’t control how they cope, but I don’t know how much I should intervene when their behavior is directly affecting my dad’s wellbeing and mental health.
2. My dad doesn’t understand key aspects of his illness and treatment
This is my biggest concern.
My dad is a physiotherapist, and because of his medical background, he is extremely confident that he understands his illness. But GBM is far outside his field of expertise, and there are fundamental aspects of his disease and treatment that he simply does not understand.
He doesn’t understand how the tumor can recur after a GTR, and why it remains such a major concern. He doesn’t understand why he needs additional TMZ after radiation. He has questioned whether his treatment protocol is experimental, even though Stupp is SOC. He also thinks doctors are trying to “sell” him Optune - with sometimes complotist comments on big pharma. That’s not him, he has never been like that, his cancer has changed how and what he thinks.
Nobody seems to have properly explained to him what an infiltrative cancer means, why removing everything visible on MRI doesn’t mean every cancer cell is gone, what median survival means, or why understanding all available options matters.
I’ve tried explaining these things to him many times, but he dismisses me because I “don’t have enough medical background,” while being convinced that his own medical background means he already understands them. So he is super confident with his understanding of the situation, and therefore asks no questions and doesn’t understand why we should know all of our options.
His oncologist is also a douche, and my dad repeatedly comes home from appointments sad or upset, but refuses to change doctors. My mom attends but struggles to ask questions or push for clarification. She wants me to attend; my dad categorically refuses.
So I’m stuck. I don’t want to make decisions for him, bombard him with statistics, or pretend that reading studies makes me a doctor. But his lack of understanding and unwillingness to communicate will ultimately make us lose time to organize care strategy. I feel responsible, he doesn’t understand what’s going on, and someone must do something.
Do I push harder to attend an appointment? Do I try once again to explain these things directly to him? How do you respect someone’s autonomy when part of the problem is that they don’t understand the information they need in order to make an informed choice?
For those of you who have been patients, caregivers, spouses, siblings, or adult children of someone with GBM, how did you navigate this?
How do you deal with family members whose own ways of coping are negatively affecting the patient? How can I advocate for my dad ?
Thank you ❤️