One patient with glioblastoma still alive nine years later
by StrangeTimes on Tue Jan 22, 2013 01:20 AM
I am sitting next to my father right now, and have been for the better part of 24 hours. He is at the very end of his battle with brain cancer (GBM IV), which began in early August of 2012.
He became mostly paralyzed by late-November, but then stabilized for 6 weeks while we took care of him 24/7. His speech was very slurred and he was often confused and irritable, but overall he could listen and hold a conversation.
Suddenly, around Jan 17th, he couldn't stand up at all (he had been using a walker), and within 3 days he fell into a deep sleep/unconsciousness.
This morning around 3am the "death rattle" started. He was breathing heavily and you could hear the fluid in his throat. My sister, mom and I crowded around him - crying and preparing for him to take his last breathe. By 4am foam was coming out of his mouth, and a little while later the foam had blood in it. It's the most terrible thing I have ever seen in my life - especially since my father is young and still in great shape despite the five months with cancer.
We have him his pain meds, Lorazepam to stop the jerking from small seizures, and then Atropine to reduce the secretions. Within an hour of taking the Atropine his mouth dried up, the foam was gone and he was breathing fairly normally. He's been stable now for 8 hours, but I know he will soon regress again and die. The Hospice nurses were saying he may die any minute this morning, but now they think he may live till tomorrow.
The ups and downs are painful to watch. Has anyone had experience with this? What happened? Do they die peacefully or do they struggle and choke for air before dying?
by SarahGrey on Tue Jan 22, 2013 02:17 AM
oh my God... my heart is breaking for you and your family...
i honestly dont have an answer for you - i've read several different things... but i think it comes down to where the tumor(s) are located that determines how things end... so even though we may all have GBM, the situations may all be different. praying for a peaceful end for your father and for comfort for you and your mother...
by kat54 on Tue Jan 22, 2013 02:22 AM
I am so sorry for you that your father is at this point. There is a very good site brainhospice.com that deals with the final timeline. I hope it helps answer some of your questions. I am praying for you and your family for peace and strength in the coming days. Kathleen
by siblingof on Tue Jan 22, 2013 02:40 AM
by karynk on Tue Jan 22, 2013 02:53 AM
My husband's breathing changed on a Wednesday evening - and we went through phases of what you describe until Saturday. You might want to ask if they can give him Roxanol - it is liquid morphine and can help with the breathing. I'm sure that hospice can help with positioning him as well, but my husband did much better on an extreme side, I would put his head up just a little bit and then the secretions would drain out of his mouth on their own.
The "can go at any minute" I went through that for 3 days.
A word of advice - what he is going through is more painful for you to watch than what he is experiencing. He is most likely in no pain at this point.
My husband did not choke or struggle, his respirations just started slowing down until they stopped. It was extremely peaceful. There is a possibility that he may stop breathing and start again after pauses. There is also a possibility that he may take his last breath, and then you might get a "reflex" breath after a few minutes. I can't remember what that is called.
Just keep talking to him and holding his hand, play him music. I would get up about once an hour and leave the room, so that if he wanted to go while I was not there he had that chance....but he apparently wanted me there.
Hope this helps-
by oakisland on Tue Jan 22, 2013 02:59 AM
I am so sorry that you are losing your Dad. I know that each person is different, but I do think that most of the time the passing is peaceful. My husband was a healthy 53 year old. The rattle and mouth secretions were the worst part for us, but we were assured that he felt no discomfort. Once again, each case is different, my husband hung on for 6 days in that state.
Praying for strength for you and your family.
by amydibello on Tue Jan 22, 2013 05:40 AM
Hold on and pray and know that you are not alone. We are with you. God is with you. Your father's passing is his journey to a much deeper existence, with you always and with your forever in your transition when it comes. Tonight, I pray for you and when the time is right....read..."Who dies..." by Stephen Levine and "Proof of Heaven" by Eben Alexander.
Wishing you courage and light tonight
Amy (and Jeff)
by modesta on Tue Jan 22, 2013 01:13 PM
Strange Times, I am so sorry that you are going thru this....my dear husband went for 3 days for the death rattle, but his passing was very peaceful...
Praying for peace and strength for all your family
by KPANDBP on Tue Jan 22, 2013 02:07 PM
I'm sorry about your father. My sons and I have been going through what you are for the past week or so. The doctor gave my wife 2 weeks or less to live 6 weeks ago. Kris was diagnosed with a inoperable astrsytoma on her brain stem a little over 2 yrs ago, she has had all treatments they could come up with both at the Mayo clinic and at Essentia health. The last week has seen her steadily decline, her hearing was almost gone, then she was unable to talk, and it is almost impossible to get any liquids in her. Since last friday she has been to weak for us to get her out of bed. The hospice nurse said it could be only hours. Kris showed them up again and has been holding on still. This morning I thought she was gone, I couldn't see and breathing or movement, and then she started breathing again. even though we know its not long now she has shown that the body can hang onto life alot longer than they predict. It has been the worst 2 yrs of our lifes watching our sons mother and my wife of 31 yrs slowly give in to this terrible thing, but the last 2 weeks have been the worst when you lose the ability to communicate with the one you love, and not even know if she can understand what you are saying to her. All you can do is hope they know how much they are loved and will be missed and that they go in peace and with out pain.
by StrangeTimes on Tue Jan 22, 2013 05:09 PM
My father passed away this morning around 2:30am. We were sure he was going to die yesterday morning when red foam began coming out of his mouth. The atropine we gave him was so incredibly important because it stopped all the foaming, and it never returned.
We were with him all yesterday, talking to him because we think he may have still been able to hear us. His breathing had improved and we all started thinking it may be another 36 to 48 hours before he passes.
We all fell asleep around 9pm as we hadn't slept at all the previous night. His breathing was fine at 1:15am when a sudden gust of wind, which came out of nowhere and went away in seconds, woke us up. We gave him more oral morphine and lorazepam, then finally fell back asleep around 2am. When I awoke at 4am he was gone - he had no pulse, wasn't breathing and his body had become hard, so we think he must have died right after 2am.
He looks so peaceful. He actually had a little smile on his face, which he hadn't had at all the previous 4 days after he fell into a coma.
Cancer is such a nightmare. It took my father, who had worked so hard his whole life to stay healthy and fit, and killed him 5 months after his first symptoms started. It was horrible, but you discover strength in you that you never knew you had. And I know he is at peace now, hopefully laughing at how silly we all are for being afraid of death when truly it's only a transition.
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