Hi Lori,

I am so sorry to hear of your loss. My mother was diagnosed with a cancerous non operable brain tumor on her left frontal lobe in November, 2010. It was shocking at the time. Guilt comes in to play. I had taken her to different doctors asking why her memory was off and why her balance was so shaky. No one ran a CT Scan. I did not know to ask for one. Everyone said the same thing... Dementia or Alzheimer's. The tumor was diagnosed too late. It was too large to operate on with out taking away the parts of her brain that make her who she is. The next couple months were crazy trying to find a place for her to be and trying to pull together the funds to make it all happen. Selling her place, her car. What to do with her bills. I couldn't just be sad. There was so much to do in a very limited amount of time. She had lived in her own place by herself up until then. I moved her to a facility close to my home. It is expensive but she is treated with care and respect. Money will soon be a factor. In 6 months we will be in trouble but I am trying not to dwell on that and take it day by day. She has her own room decorated similar to her room at her old place. She tried radiation only to find that after 1/2 of her treatments it had actually grown and spread to the right lobe. It was recommended that we stop treatment and get her involved in hospice. That was in mid January. Things slowed down after that. She does not know she is ill. Her memory loss is such that I would have to remind her every day and that just seems plain cruel. She is very much like a child. Health wise she seems to have leveled out. The biggest problem is that the Decadron does not react well with her diabetes and her sugars are extremely low in the morning and very high at night. She does not communicate well. She often just sits seeming very disinterested in everything and yet gets sad when it is time for me to go. She never asks about anyone. Sometimes she asks where her dog is. In January she could stay up at night until 10:00pm or so. Now by 6:30pm she is sound asleep. Her vitals are normal. Her appetite insatiable. I think that is due to the steroid. I don't know what to expect. In January they gave her 6 months..but even the doctors admitted that was just a random number they pulled out of the air. Hospice is great but we cannot determine if the tumor has grown. The definition of hospice is to just make her as comfortable as possible until the end but we cannot do CT Scans any more or MRI. I find myself analyzing every moment. "Is she just tired or is she TIRED?" "Is she out of it because of the extreme changes in her sugar levels or is she out of it because of her tumor?" We have not had a conversation since November where she actually contributes a thought. She has changed so much in the last year. It is painful when I think about it.

I guess I just needed to ramble..thank you

Laura
May, 2011

Laura,

First of all, I am so very sorry that you are struggling caring for your mother. I know it can be overwhelming. My mom was the primary caregiver and she had lots of back-up help including me and my sister and other family relatives that she could trust. I hope you are receiving help from those close to you. Hang in there...I know it isn't easy. One of the hardest things to watch is the personality changes. I was lucky in that he didn't change too much. I will say from my personal experience that the chemo and radiation didn't really do anything except maybe give him another month or two. GBM is extremely aggressive so that even if the radiation is touching one area I am sure the tumor was still spreading and growing on the other side of his brain. I'm proud of my father for trying and doing the best he could with the treatments that are out there, but it really just seemed palliative from the point after we left the hospital after his brain surgery. I will also tell you that from our experience, his tumor and medication had him sleeping constantly towards the end of his illness. We would have to wake him up for food or water...but after a while we could see his body was just shutting down and that the brain tumor was now in control of him. It's so sad to watch. Please don't blame yourself for not asking for a CT Scan. The symptoms of a brain tumor can be so strange...and we ourselves kept thinking...maybe he just forgot? or maybe he just fell and lost his balance? but when we look back we have 20/20 vision. I don't know how...but you will get through this and be there for your mother in her deperate time of need! Peace!!!