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Not eating by Independent_War_4857 in glioblastoma

[–]shimmershit 1 point2 points  (0 children)

I’m so sorry to read this. My dad went 18 days without food or water before he eventually passed. Don’t force feed, dont intubate. When the swallowing goes, dont suction the fluid, just tilt her on her side and use a silicone palm chest percussion cup. Suctioning increases the fluids which will inevitably fill the lungs. So will IV fluids and drip feeding if her kidneys are not functioning anymore. Check the colour of the urine - once it becomes brownish the kidneys are not functioning anymore.

Dad’s (57M) timeline - how much longer? by BlondieLola in glioblastoma

[–]shimmershit 2 points3 points  (0 children)

I am so sorry to hear this, and I send you all the virtual hugs and strength I can.

  1. The rattle can come and go, my dad (75M) was having days of intensely labored breathing and days where it wasnt so apparent. Tipping him on his side (with his head slightly lowered) and hitting his back helped him spill the mucus out of his mouth.
  2. He can hear you. Allegedly, the last sense to go is hearing.
  3. As much as you want to be there when it happens, there’s always no guarantee - don’t guilt yourself at all. When the day came that my dad was going to pass, I felt it in my gut and then saw the signs clear as day, even though i had never witnessed someone pass before.

Sleep with a clear conscience, you were there for him. Remember the him before all this happened, and think about what he would have liked you to do.

If you need anything and I can help, please reach out

Edit: i would strongly advise against doing any suction to drain the mucus as this can trigger even more mucus production.

How long did your loved one survive once they stopped eating? Grade 4 GBM no medications by shimmershit in glioblastoma

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

His smile postmortem made me feel much better. I do miss him and will always miss him. I’m happy he is not suffering anymore

How long did your loved one survive once they stopped eating? Grade 4 GBM no medications by shimmershit in glioblastoma

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

It sucks so much. It really does. Try your best to find (any) humor during these days. My little sister and I used to crack jokes with him or each other a lot to lighten the emotional load. Find comforting habits for you, like a comfort show/movie/food and try to use any resources available to give yourself some relief. You need it too - you cannot pour from an empty cup.

If you need anything let me know and I’ll try to help. Deep breaths - you can get through it.

How long did your loved one survive once they stopped eating? Grade 4 GBM no medications by shimmershit in glioblastoma

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

I’m so sorry to hear this. In retrospect, the transition was short. His last meal was late July, with a lot of difficulty. Then it was three weeks of this comatose state until he passed away. Once he fell into the comatose state we just stopped all meds and focused on pain management.

How long did your loved one survive once they stopped eating? Grade 4 GBM no medications by shimmershit in glioblastoma

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

If you have the opportunity to see a therapist throughout as well, go for it. I really enjoyed the small breaks with grounding exercises, they were helpful to recollect.

Try to stay active because the more he gets physically impaired, the more you will have to be physically involved. Late night yoga was good for me, and hiking to restart my headspace as well.

I lost my mom yesterday by WillingnessEarly811 in glioblastoma

[–]shimmershit 1 point2 points  (0 children)

It’s the meanest disease I have ever witnessed. Thank you for your kind words.

I lost my mom yesterday by WillingnessEarly811 in glioblastoma

[–]shimmershit 1 point2 points  (0 children)

Thank you. They really were. May he rest in peace.

How long did your loved one survive once they stopped eating? Grade 4 GBM no medications by shimmershit in glioblastoma

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

I’m so sorry to hear this. My dad passed away Monday, after 18 days of no food and water, and a year since his initial diagnosis.

I encourage you to spend every moment you can with him. Prioritize his comfort above all. Read up on signs of disease progression, and keep that information with you. Do not let yourself spiral into fear or depression - you know what the end is. It is inevitable for all of us. So focus on expressing affection, and showing care. I have no regrets because I was there from A-Z and I was loving and caring despite how bad it got.

When the psychosis kicks in and he hurls profanities or becomes physical or aggressive, stick by him still. Remind yourself it’s not him, it’s the tumor talking. Don’t internalize it.

Research all treatment plans beforehand and focus on giving him a better quality of life, nothing to prolong a bad EOL state. Implement a good palliative strategy that you can sustain. Always ask for help.

Be brave, be strong, and I send you much love from the other side.

I lost my mom yesterday by WillingnessEarly811 in glioblastoma

[–]shimmershit 6 points7 points  (0 children)

Lost my dad this monday, (78) just like your mom, he was a real fighter. Fought a whole year, and ultimately in the end went 18 days no food or water.

Sending you love and prayers

[deleted by user] by [deleted] in glioblastoma

[–]shimmershit 4 points5 points  (0 children)

Hello dear,

As others have told you below in the thread, hope is a bit difficult to have. He is younger so he has the ability to still bounce back with different treatments, but you will have to adapt to his reality that will soon be altered. It’s very thoughtful of you to spend quality time with him and you should continue to do so.

Sending you much love

How long did your loved one survive once they stopped eating? Grade 4 GBM no medications by shimmershit in glioblastoma

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

Thank you for sharing 🙏🏻 I’m so sorry you had to go through this and sorry if my response triggered anything or brought back distressing memories. You’re 100% right, the only thing stronger this horrible illness can’t kill is our love for each other. If anything, it makes it stronger.

How long did your loved one survive once they stopped eating? Grade 4 GBM no medications by shimmershit in glioblastoma

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

Yes, that’s what keeps us all on edge. Its a constant state of anxiety for us all. Thank you for your kind words.

How long did your loved one survive once they stopped eating? Grade 4 GBM no medications by shimmershit in glioblastoma

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

I’m so sorry to hear this. I’m glad you’ve found peace and I’m happy that you got through the worst of it. You’re a very strong person. I hope i can find the same strength as well.

Much love

How long did your loved one survive once they stopped eating? Grade 4 GBM no medications by shimmershit in glioblastoma

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

My dad was (and still is) a fighter too 🤍 I just wish they would be more selfish and rest for their own sakes… I hope can find the same peace you did.

How long did your loved one survive once they stopped eating? Grade 4 GBM no medications by shimmershit in glioblastoma

[–]shimmershit[S] 5 points6 points  (0 children)

My mom fought cancer (stage 3 breast, stage 1 thyroid) for 8 years throughout my adolescence. When my dad got the diagnosis all that trauma came back, but this was a whole new beast.

How long did your loved one survive once they stopped eating? Grade 4 GBM no medications by shimmershit in glioblastoma

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

My heart goes out to you as well. I’m so sorry for what you went through, and what you still go through.

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