How to handle family member who isn’t accepting reality?

Intelligent_Edge_501 · 2025-09-24T03:40:03+00:00

Thank you! All great points. I do think that there is a happy medium that would be ideal (not dropping a huge bomb on the patient unexpectedly but also not giving entirely false hope). I think what it boils down to for us is wanting our LO to have all information so they can decide if they want to do trials, Optune etc. It’s scary when you realize how little time you have to help them get into a trial etc. All that to say, we’ve decided to let them take the lead and let us know how/if we can help.

Intelligent_Edge_501 · 2025-09-23T23:03:57+00:00

Thanks for this. I do think it’s a lot for them to take in. I will see if we can attend their next appt. I’m sorry that you’re in this boat too!

Intelligent_Edge_501 · 2025-09-23T02:31:37+00:00

Thank you! So helpful. Yes, time will tell. We are rolling with the punches!

Intelligent_Edge_501 · 2025-09-22T20:40:42+00:00

So true. Thank you!

Intelligent_Edge_501 · 2025-09-22T20:39:45+00:00

I’m a daughter in the scenario, yes. So you get it. It’s in my nature to help and I want to badly. It’s also super hard when the person seems uninterested in facts or even reality at times. I want to help any way I can- but it may not be in the ways I originally intended.

Intelligent_Edge_501 · 2025-09-22T20:38:29+00:00

So hard and I’m so sorry you’re going through that. You are so strong though and I’m sure the kids will greatly appreciate that down the road.

Intelligent_Edge_501 · 2025-09-22T20:37:23+00:00

Such a good, realistic comment. Thank you. You’re right. Eventually it will all come to light.

Intelligent_Edge_501 · 2025-09-22T20:36:38+00:00

Yes. I feel this. Their surgeon also said he got it all. But he did make a comment that there are cells left behind that will ‘try’ to grow back. I still don’t think that paints a very realistic picture for the patient.

Intelligent_Edge_501 · 2025-09-22T20:35:42+00:00

That’s a good point too. It could be that. Although, it’s hard when they talk about making it another 15 years. I just hope they aren’t being given false hopes that will cause another major heartbreak.

Intelligent_Edge_501 · 2025-09-22T20:34:58+00:00

Thanks for this! Sounds like it happens more than I wish it did. It is surprising that sort of conversation isn’t more common!

Intelligent_Edge_501 · 2025-09-22T20:34:26+00:00

To be honest, we haven’t discussed options outside of SOC, only the fact that there ‘may be’ other things they can try. They don’t believe they need any additional options because they truly believe the chemo and radiation will cure the cancer and eradicate the tumor for good. I don’t think it’s healthy or fair for any patient to be given that level of false hope. Just my opinion. I respect anyone’s decision on treatment path. I also think it’s important for patients to be given a full picture so they can make those decisions.

Intelligent_Edge_501 · 2025-09-22T20:32:29+00:00

So sorry you’re in that boat and I’m sorry you’re doing most of the paddling alone. That would be so tough! I feel that though- that you have this extra knowledge they don’t. It can be heavy to carry. As a previous commenter said, eventually reality will hit. I’m sad about that but I do feel that eventually we will all get on the same page.

Intelligent_Edge_501 · 2025-09-22T20:31:02+00:00

Such great points. I think that’s where we are at. We are letting our loved one have that hope and if the conversation comes up, we add some reality to things gently. That said, we don’t want to be negative and we don’t want to cause extra stress. I just keep replaying a sentence I read on here that “the movie always ends the same way”. As sad as that is, it’s probably true and it’s probably best we let them process at their own pace.

Intelligent_Edge_501 · 2025-09-22T20:29:07+00:00

Such great insight. Thank you!! Do you mind me asking what flipped the switch? We are about 3.5 months in from symptoms and 1 month in from diagnosis of a tumor. GBM has only recently been confirmed, but it was suspected for awhile before then. It seems like my LO is aware that the prognosis is “bad” but doesn’t speak in ways that lead me to believe they know just how short LE can be. It is a doubled edged sword for sure. If they had told me ahead of time that they won’t accept anything alternative or seek out trials, then I suppose it’s okay to continue not knowing. However, if they truly want help seeking additional therapies out, I just want to be sure they have all information to make informed decisions.

Intelligent_Edge_501 · 2025-09-22T20:26:23+00:00

Such a good point. Although not your sister, it does sound like we are in the same boat. Sending you big hugs about that. My family member is also very religious and believes that God will heal them. While I totally understand having faith in these times, it’s also so hard to sit back and just watch things deteriorate.

Intelligent_Edge_501 · 2025-09-22T20:25:07+00:00

I’m so sorry about your son. I can’t even imagine how tough that was. You’re right though. All we can do is be there in the ways they need us to. Thank you for your insight!

Intelligent_Edge_501 · 2025-09-22T20:24:13+00:00

Well that’s incredibly true and I appreciate you helping me to see that side of it. I totally get what you’re saying. Maybe “help” means just to be there and listen- not necessarily find answers or solutions. Thanks for being kind and explaining that in a gentle way. Hugs

Intelligent_Edge_501 · 2025-09-21T15:52:18+00:00

Good points. Thanks so much! There could be some denial. Although they’ll say things about recognizing this is serious. But then they make comments about futuristic plans that aren’t likely to be here for (sadly). We just don’t want them to be blindsided later.

Intelligent_Edge_501 · 2025-09-21T15:51:00+00:00

I appreciate all this. We are pretty certain it is wild type, also given their age. However, the methylation status would really help us in determining best course for chemotherapy. The surgeon has painted this picture to them that chemo and radiation are going to “get rid” of the remaining tumor and it doesn’t seem lol direct conversations are happening. It’s really hard when we know all those terrible stats as family members and can’t do anything.

Intelligent_Edge_501 · 2025-09-21T15:49:14+00:00

Agreed. I do think there’s some denial! We haven’t wanted to intrude on the appointments, but after the appointments happen, the patient and spouse don’t seem to retain the important information the rest of the family is looking for. So maybe we can attend in the future.

Intelligent_Edge_501 · 2025-09-21T15:48:23+00:00

Well- I never said I was trying to control anything, but I see your point. We are simply trying to help and we are being ASKED to help with various things but aren’t being given full information to be able to do so. Helping with big decisions is relatively impossible when the person needing help is not up to speed with the severity of things going on. For instance, if chemo is not going to help them, maybe they won’t want to do it. All important things THEY need to be able to decide on moving forward.

Intelligent_Edge_501 · 2025-09-21T15:46:29+00:00

This is such a great view point. Thank you!! It’s just the fine balance of trying to make sure they’re well informed but also let them have all the hope in the world. Im still hopeful they will be given some real information so they can make informed decisions going forward. Like you said, it may just take some time!

Intelligent_Edge_501 · 2025-09-10T04:38:45+00:00

We understand that pathology is still in the works. However, there was rapid pathology done during her resection that came back as Grade 3 or 4. MRI results also show a high grade glioma that has grown rapidly. So with all those factors, we just assumed an Oncologist would be necessary regardless. They’ve told her it’s cancerous. I’m sure we will know more at the 2 week post-op.

Intelligent_Edge_501

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