I hope this doesn't offend anyone but I have to know what the end of life stages are for someone with GBM? My family needs some answers to help cope with our loss. Any information on where to find more information is greatly appreciated.
Last edited by dad1933; 08-11-2011 at 08:40 PM.
The following user gives a hug of support to dad1933: mandyharrison (11-06-2011)
I am very sorry that your family is going through this terrible time.
We just lost our niece to gbm.
Our niece went on the new medication Avastin which did add a couple of mths to her life.
The good thing about (gbm) if there is any, is that the patient is not in pain.
The last 4 wks of her life, she had a hard time eating, even baby food, then she had a hard time swallowing even water.
The last week of her life, she started with seizures, she had 1 at home, and another when she arrived at the hospital.
While at the hospital, she had 2 more seizures. Again the good thing is that they have no memory of the seizures.
After 4 seizures, and no food or liquids, they told my niece that she was at the end of her journey, and that she had to make the decision of having a feeding tube or just have Hospice come to her home to care for her.
Her decision was to go home where she was heavily drugged and left us peacefully 4 days later.
I hope I have helped a little with this trying time. I wish you all the best of luck.
I lost a dear, dear friend to glioblastoma a few years ago. He remained lucid to the end, even making his wants known as far as final arrangements... music and all. In the final two months, he mostly just slept and was usually too tired to even talk. He would listen and nod once in a while and even smile on occasion. He did stay at home until the end with his family washing him and helping with a bedpan and such. In the last month, Hospice was called in and serviced him at his home. They are a wonderful organization that helps so much not just with the patient, but also counseling his children. I think working with them is so worthwhile. I wish now they had been called earlier as it would have helped some of the family's stress in caring for him.
Marilyn, Thank you so much for your reply... I don't think I ever realized how many wonderful people there were in the world that are willing to support complete strangers in their time of need. I'm so very sorry for your loss of your neice... What an incredibly hard journey to endure. My dad passed away only 42 days after his diagnosis of GBM. He also had COPD issues that complicated things tremendously. He never got a chance to fight a losing battle. Less than a week before he died, he developed Pnuemonia. We knew seizures were a possiblity as your neice experienced, but it never happened. Dad was pretty coherent and was able to eat and drink up until the Pnuemonia happened. Although we knew what he was facing, what we are having problems with, is the last 2 days of him struggling to breathe were absolutely horrific. He was still in the nursing home and we had signed "comfort care" papers for his end stage care. He thrashed and flailed for a day and a half and was on nasal oxygen the whole time. From what I've read, it's called Terminal Agitation. Our questions mainly lie in what to expect from a GBM death and is different from any other death. I know it may sound morbid, but it left mom and we kids with everylasting memories of dad and was there something different that could have been done for him. Yes, your reply has helped me a great deal... just knowing that a GBM patient passed on with dignity and respect and there was no pain for her. They are both in a better place now, with no more worries. My prayers go out to you and your family... Lisa
Thank you for your posting. I can't tell you how much you have helped and I'm so sorry for loss. It's a horrible thing. My dad's journey was not the same as your friends and my intent for my posting was to understand other people's experiences dealing with GBM. Dad passed away only 42 days after his diagnosis and never had the chance to fight a losing battle. His passing was horrific to our family and we have questions about the why's and how's that might have helped him pass peacefully. We did have "comfort care" with the nursing home he was in, but it was not "Hospice" I thank you again for sharing such a personal story with me. Lisa