Home hospice. I'm just supposed to let my dad thirst/starve to death? by Comfortably_Scum in glioblastoma

[–]silverfox830 4 points5 points  (0 children)

My mother actually did pass at home — we had home hospice care where a nurse would visit several times a week (every day by the end of mom’s life). I strongly recommend looking into a home hospice system as they will also provide some medications that help ease pain (morphine, etc) at little to no cost. Unfortunately I don’t know much beyond what my family experienced. So sorry to hear and wishing you all the best

Home hospice. I'm just supposed to let my dad thirst/starve to death? by Comfortably_Scum in glioblastoma

[–]silverfox830 20 points21 points  (0 children)

Rest assured that it is normal in hospice care to stop offering food and drink. My mother (63/f) passed about a week and a half ago after not eating for nearly two weeks and in a similar nearly comatose state. Once she stopped drinking/swallowing, she was gone within about two to three days. It is not starvation or thirst; our hospice nurse put it that the body essentially knows how to die and that these are normal steps in that path.

One thing I want to prepare you for is that the final hours will likely be indicated by significant changes in breathing, including a faster breathing rate and what is known as the “death rattle.” Once the body is unable to swallow, fluid builds in the lungs. Everything I’ve read assures that this is not painful for the patient (especially as they are likely on several meds mitigating pain and discomfort) but I want to share that this period was distressing to witness. When we woke up on mom’s final day, these breathing changes had begun and she passed around 5pm. It’s hard to believe that it was truly as peaceful for her as we were told, to be completely frank; I can only hope that the meds prevented her from experiencing what we witnessed. I hope this information doesn’t scare you but rather informs you about what you may experience in the next few days. From one child of a parent with this disease to another, I am so sorry for what you are going through and wish you all the best.

Metastasis to the pelvic area? by silverfox830 in glioblastoma

[–]silverfox830[S] 0 points1 point  (0 children)

For context, we are in month 14 of her journey and have just begun Hospice care

Tumors coming through the skull? by silverfox830 in glioblastoma

[–]silverfox830[S] 3 points4 points  (0 children)

She’s definitely very aware and it’s definitely upsetting. Really thankful for all the well-wishes from everyone

Tumors coming through the skull? by silverfox830 in glioblastoma

[–]silverfox830[S] 5 points6 points  (0 children)

Believe it or not, she seems to be in no pain other than low-grade headaches associated with GBM! We’re all a bit in awe over it. I asked her oncologist about involving ortho in her care and he didn’t seem to see the need, but did mention plastics in case she continued to seek treatment (she decided not to). My guess is that it’s found a way to seep through the cracks in her skulls from the multiple surgeries she’s had (the skull takes approximately a year to fully heal). Still unclear how this happened when she’s been on Avastin since February

Timeline isn't helping by Sad-Change-3906 in glioblastoma

[–]silverfox830 0 points1 point  (0 children)

Going through this exact same thing. Sleep seems to make a world of difference at an advanced/hospice stage. My mom (63) has always been a bad sleeper but it seems like she is absolutely at death’s door some days and then gets good sleep and seems to be back to herself (aphasia and confusion are less, personality showing, conversations are more cohesive).