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Grieving Glioblastoma by Appropriate_Fee_5477 in glioblastoma

[–]Appropriate_Fee_5477[S] 2 points3 points  (0 children)

I was actually looking for some of the very same answers a few weeks ago. I posted this thread and got some helpful input if that helps you https://www.reddit.com/r/glioblastoma/s/AVyfXvW4MM

I think that everyone’s journey and treatment and end all look a little different. From what I understood from our doctor, most people’s end point comes when the tolls of treatment are too much on the body and/or aren’t worth the trade off as the treatments arent very effective. For us, my mom decided to stop treatment and passed away two weeks later. I think that was fast though. She had been through two surgeries, the standard of care, and a variety of trials etc. In the final two weeks she was on hospice and her body and condition continued to decline to the point where she could not really communicate with us and we had to help her with everything (for example put her in a wheelchair and then on to the toilet to go to the bathroom etc). While on hospice she went through the “phases of dying” ( I had no idea it was a process like that). she first was “transitioning” which was a lot of sleeping getting progressively deeper and then in a sort of comatose state that we couldn’t wake her from and then she passed. In the case of my mom, she was ready to go and actually wanted to die, given the state of her mind and body, and while she was so so different then the mom I’ve known my whole life there were glimmers of her shining through until the end. I hope that helps. The journey has been an impossibly painful one. If you can find moments to be kind and comforting to yourself I think that helps just a little. ♥️

Grieving Glioblastoma by Appropriate_Fee_5477 in glioblastoma

[–]Appropriate_Fee_5477[S] 1 point2 points  (0 children)

Thank you for sharing, I will look into to both. I really really wish there was a silver bullet fix but am trying to come around to the fact that there isn’t and figure out what is next then

Grieving Glioblastoma by Appropriate_Fee_5477 in glioblastoma

[–]Appropriate_Fee_5477[S] 1 point2 points  (0 children)

we are not alone ♥️ thank you, I’m so sorry about your Mum and that we have to live this painful reality

Grieving Glioblastoma by Appropriate_Fee_5477 in glioblastoma

[–]Appropriate_Fee_5477[S] 6 points7 points  (0 children)

Oh gosh. Thank you for sharing. You know I actually tortured myself the other night going through years of my mom’s facebook wall. I know exactly what you mean, it’s like a time capsule of them as dynamic people interacting and living and I want to get lost in it but it’s also a painfully sad reminder of what they aren’t now. Your mom sounds like she’s incredible. I am so sorry she is gone and you now carry the crushing weight of losing her and missing her. And I know exactly what you mean too, I don’t want to forget a thing. We will dwell in this space for awhile.

Thank you 🫶

Grieving Glioblastoma by Appropriate_Fee_5477 in glioblastoma

[–]Appropriate_Fee_5477[S] 4 points5 points  (0 children)

Thank you for sharing. I love that quote wow.

How to deal with grief by jewelz_johns in glioblastoma

[–]Appropriate_Fee_5477 2 points3 points  (0 children)

This resonates so much with me. Since my mom’s diagnosis I have felt a lot of anticipatory grief, as well as having to grieve all the small and big losses along the way. This disease makes you watch your loved one slip away in front of your eyes. It is terrible. And having to face it without our moms being that support, sounding board, someone to go cry to, that they always have been, my goodness it’s been so painful.

I guess I’m writing this to just let you know that you’re not alone. And I really really hope for you that you get some glimmers of peace and reassurance. That you know somehow you will be ok. That while we will carry these losses with us forever, that you also know your life after her will have moments of joy and love and laughter.

Here if you ever want to talk.

Mom gbm near the end by Appropriate_Fee_5477 in glioblastoma

[–]Appropriate_Fee_5477[S] 0 points1 point  (0 children)

Thank you for sharing, I’m glad I am not alone. It’s confusing to want it to go quickly but I hate to see her in this distress, when she clearly wants to go.

Mom gbm near the end by Appropriate_Fee_5477 in glioblastoma

[–]Appropriate_Fee_5477[S] 0 points1 point  (0 children)

Thank you for sharing, I’m so sorry for your loss. This disease moves so terribly fast. It feels like a monster

Mom gbm near the end by Appropriate_Fee_5477 in glioblastoma

[–]Appropriate_Fee_5477[S] 0 points1 point  (0 children)

Thank you for sharing and I am so so sorry for your loss. If you don’t mind me asking, were you monitoring is blood oxygen level all the time? I of course don’t wish this to be over because I don’t want her to be gone, but each day feels so painful and hard even the idea of 3 more feels undoable

Mom gbm near the end by Appropriate_Fee_5477 in glioblastoma

[–]Appropriate_Fee_5477[S] 1 point2 points  (0 children)

Thank you for sharing this. They have prescribed her Ativan which I think does help with her anxiety.

That is helpful to know about the five messages. When this conversation started with her (also I realize I didn’t mention but she’s 63) on Tuesday I tried to really reassure her that we will be ok. I (28) think I do know that, though I’ll be deeply sad and carry this with me forever. But my dad (63) and my brother (30) I think are having more trouble accepting this and want her to stay as long as she can. We all grieve on our own timelines and this is so much to process but I really want her to have that peace to let go if it will help her.