One patient with glioblastoma still alive nine years later
by ilovemybear on Mon Nov 05, 2012 05:47 PM
Hello to everyone here at CC. Just an update to recent post I did regarding my husband Kevin and hospice care.
He is still under hospice care at home, but he no longer has good days where he smiles, tries to talk just a little or joke around. He sleeps most of the time now. Even though he is here physically, I miss hearing his voice...hearing him say he loves me...I miss everything about him. My body and mind so desperately want to start healing. I whisper in his ear how very much I love him...that I'll be okay....its okay to go, but this disease is taking its time letting my sweet, sweet Kevin go. It's a waiting game now...a very sad and cruel waiting game : ( The days seem to be getting longer and longer as I sit here and watch him fade away from me. I panic at the thought of how he will finally go - will he be in pain...will he know what is happening....will he fight til the bitter end or will he just fall asleep and not wake up...will he have his peaceful end????? Hospice care at home has be so very challenging and scary....there are days where I just wish a hospice nurse could be here around the clock, or at least most of the day....I know hospice is just a phone call away, but I guess for me this all about fear of the unknown and just needing someone here, a nurse, who has been down this road. I don't like this feeling of just out there floating...lonely and unsure about what is going to happen to him towards the end. I want to protect him, but there is nothing I can to stop this...to make it go away. I will settle for peace and comfort for him at this point.
You are all still in my thoughts and prayers...stay strong!
by Spouseof on Mon Nov 05, 2012 08:36 PM
by loveiseternal on Tue Nov 06, 2012 12:10 AM
Melissa, so sorry that you are at this point with your Bear. He is blessed to have you by his side.
My Randy passed away at home. Hospice was in and out the last 5 days that he was in a coma but they did not stick around for hours. I don't think that they operate that way. They got me in touch with a home health nurse that I hired to spend the last two nights of his life with us. We both slept in the room with him but she was in charge of the meds so I could get at least a little rest.
So if you think that you would like more help, ask hospice about a home health nurse. I told her that she was a Godsend as she was experienced and exactly what I needed to get me through the last little bit.
Yes, it is so hard to watch them go. I hope your Bear's passing is peaceful, but if it isn't (like Randy's was not), you will get through it and at least you are there for him. He is probably not feeling anything at this point so all the strain is on you. I talked to Randy nonstop when he was in his coma--a running commentary. If I left the room I told him where I was going and when I expected to be back. I put on old home videos so he could hear the sounds of the voices of his loved ones (like his mom who had passed away).
God bless you. I hope you get the help you need, Sally
by Gaylec on Wed Nov 07, 2012 04:23 AM
Our hearts are with you in these last difficult days. Hugs to you and your dear Bear.
GayleC wife of John, GBM warrior
by ilovemybear on Wed Nov 07, 2012 05:01 PM
Everyone....thank you so much for your kind and thoughtful words. Still hanging in there. As bitter sweet as it is, it makes me feel so much better knowing you all get me and understand this place called GBM world.
Warm thoughts and many blessings to all.....stay strong no matter where you are in your journey!
by kim55 on Sun Nov 11, 2012 08:01 PM
Melissa, my husband of 38 years, Zeb is in his 25th month with GBM. I took care of him at home for 23 months, and he became so disabled that he collapsed, was hospitalized and now is in a private nursing home (costing me 7,500) a month out of pocket, but thank goodness for life insurance. We have hospice in the nursing home which is good, because taking care of him now is a team effort. He too sleeps most of the time and I am having panic attacks, anxiety and trying to lower my dosage of lorazepam at the same time. My life has been on hold for over 2 years. I keep hearing that anticipatory grief which is what we are having is the most painful grieving there is. I hope that's true because my heart just can't take much more. I am 58 years old and this is the scariest thing I have ever seen. Been with Zeb since I was 14 years old and he is the love of my life. I think a little of me dies each day. I completely understand how you feel. Zeb can converse (sort of) sometimes, but I miss his I love you's, conversations and just having my husband with me and its been 25 months, I guess I should be use to it, but I'm not. I'm living with one of my sons to be able to afford this wonderful nursing home, but that doesn't stop the lonliness. I thought last week when I felt lonely, and sad, I would just talk to Zeb and he always fixed it. Now what do I do? I wish you good luck on this horrific journey.
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