Stan,
I am sorry for your loss. I know how deeply it hurts. My wife of 35 years lost her battle with GBM in September,2010 at age 58. It was a short battle for us - only 20 weeks from diagnosis to the end. I picked her up at work on April 21, 2010 and took her to the E/R with symtoms similar to a stroke. We received a prelimnary diagnosis of GBM that day from an MRI. Her tumor(s) were inoperable and she went through 6 weeks of radiation therapy along with temodor chemo, and then one more round of 5 days of temador. There was no improvement and we called in Hospice.
For anyone interested, I recommnend reading all you can and checking the links at brainhopsice.com This site has information that the doctors do not tell you, but you need to know. With the exception of the support of my daughters and son-in-law, it helped me more than anywhere else to know what to expect and when to expect it. In some ways, I think I was lucky, I got it on the first day. "GBM is a death sentance." Some will have more time than others with their loved one. Some will have less - that was me.
My older daughter is a PhD Speech Pathologist, so she knows the brain and what happens there. My younger daughter and her husband are both MD's. They almost never invoked their knowledge base on me, but rather provided loving support.
I took my wife to San Antonio for treatment and family support. We spent 18 weeks there and without the support of family, home health, and hospice, I do not not know how I could have survied as well. The care we received from the START Center was expecptional as well.
I encourage any as a caregiver to seek additional support. You cannot do it by yourself. Get home health, a hospital bed with rails, and do not leave your loved one alone at any time. Get additional help at night, so that you can sleep and be there in the daytime. You may have to pay for it, as I did because I was not in my home environment, but get it.
Drug induced diabetes is a side effect of high doses of decadron (steroid). Deal with it - you need to continue the decadron to keep the swelling in the brain down, but be careful. As food intake at the end is reduced, you will want to abandon injections or oral insulin, as the effect of the insulin is negative rather than positive.
All the best to you all who are dealing with this dreadful disease. My heart goes out to you. Again I encourage you to go to brainhospice.com and read all you can.
Happy Trails,
Larry Owen
lwowen@swbell.net |
