Madelineruth & Jennifer

Hi, How are things going for your mother? Think of you often during this time. Warm Regards, EvaLyn

Dear Evalyn, Our mother died on September 20th after being in a coma for 26 hours. Her last 7-10 days were awful for her, and hard for us to watch her experience. She did not have physical pain, but what the neurosurgeon termed "emotional pain". She had many of the endstage symptoms as can be read on the brainhospice.com site. It was pitiful. She was miserable in the end because of the emotional misery.....we had given her morphine under the tongue which did not help initially. We were not told that it was necessary to give it every hour until she goes to sleep. In brain tumor patients, it is common for 1 or 2 doses of morphine to do basically nothing, because the receptors in the brain are not functioning very well. My sister and I both stated in the end that we were going to make sure that everyone on this site be made aware of this and to question hospice fully on how and when to give the morphine. We were in the middle of the night, and Momma was calling out and pulling on her clothes, and having the urgency to go somewhere, etc. and we weren't able to help her, because the morphine was for "pain". We didn't get clear instructions on this as we should and she may have suffered more emotional misery than was necessary. Ativan and Xanax didn't touch the emotional symptoms. It was awful and heartbreaking to watch. My heart goes out to all of you with this disease and all of you with loved ones suffering from it. It's the worst thing I have ever seen in my life, and to witness my mother go through it broke my heart.

I am so sorry to hear of the news, especially the anxiety you all suffered during the last days. I hate this happened to your dear mother. I have been thinking about you all and praying for all of you. I am so sorry. You were my first contact on this Message Board. I thank you for the advice given and will be sure to check into it when our time comes. I really don't know what to say, I know you are heart broken. Much love to you both, Eva L.

Dear Linda & family, i too am so sorry to hear of your mother's passing. everyone feels bad for a person when they pass, as they should. but i feel that when a loved one dies, their suffering ends. it is the ones that are left behind that suffer the most, having to deal with the loss of someone that has been there for them all their lives. if it is possible, after all the gatherings and services, after everyone who came has gone back home, maybe take a few days to go somewhere to get away from the familiar surroundings that may bring unwanted memories. here is a short story if you have a few moments. i found it strangely comforting and touching. i hope you like it. it is about a leaf named freddie. http://www.buddhistinformation.com/fall_of_freddie_the_leaf.htm -Amnia

I know that it seems there is nothing to say, but that' okay. I appreciate you and just knowing that you care. Feel free to continue to post to me when questions arise, and if I can offer any suggestions. My mom died 10 months to the day that she awakened with symptoms. In the 2-3 months prior, she had just given a tea for a niece getting married, gone to lunch and shopping with friends.....she was active and in the middle of moving to a new home with my dad, and they were planning and living their lives. A year ago, I would have never dreamed that my mom had a brain tumor waiting to emerge. We had noticed an increase in her stress level, but believed it was because they were moving to a new home. Looking back, I feel that I should have picked up on more signs, but who would have thought? I remember in September, mentioning to my mom that she should ask her doctor for Prozac or similar antidepressant/antianxiety to help with the anxiety of moving. She didn't think it necessary. My mom had so much faith.....she told me that she was at peace with whatever happened. She never gave up hope, but her hope changed. Initially, we knew little about a GBM, and she was never able to learn about it to the extent that we did, but she knew 4 days after surgery that it would take her life. We continued to have hope that she would be a long-term survivor and have quality days, but that never happened. Once we got to about 7-8 months post diagnosis, and knew that the tumor was resistant to the Temodar, her hope of getting better changed to the hope of Heaven to come. She enjoyed what she could, which was seeing her daughters and her 2 grandsons, and a few of her good friends, and she was able to enjoy food. The Decadron was increased and fortunately gave her that little pleasure, temporary that it was. She had her last solid meal 5 days before she died, and her best friend (a wonderful cook) had prepared it. Eva Lyn, I must tell you that it is the strangest feeling.....to go through the anticipatory grief for 10 months, and then suddenly, be without my mom. I have cried so much, knowing that she would die, knowing that I would lose her to this tumor......and now that she is gone, there is a certain peace of knowing that she isn't going through this anymore. Knowing that she couldn't do anything, had no ability, lost most of her vision to even read, conversation of length made her nervous, was totally helpless, and at the same time, she knew that she was waiting for this to take her life......must have been absolute misery. In spite of it all, she handled it with grace and dignity, was strong, was a good patient, and did everything that she could to do things the way they should be done. Knowing all of this, and knowing her faith, I had peace in my heart the days following her death, and still do. I look at her pictures and can't believe that my mom is gone. I miss her so much and I want to talk to her. And it's only been 8 days. What will the rest of my life be like? I know that grief will last forever. But, I tell myself, that if she can fight and be strong and have the attitude that she had to fight this tumor, I will never complain about anything that happens to me, and I will be strong in dealing with this loss. Yes, we grieve when appropriate, but she wanted us to go on with our lives. It's important that we do, because it gives her life the value that she deserves. You continue on, and do your best to help your mom. You will be glad that you did, and she knows that you love her. We will pray for you.