Side Effects and Long Term Life with a Glioblastoma HELP!

Other families going through a glioblastoma, I need your help and advice. 

My mom's tumor is in remission, however she is behaving as if she is out of her mind.  Her sentences do not make sense, she doesn't seem to know where she is.  She seems completely confused. 

She is not on any steroids, but we think she may be getting her other medications confused.  We can't get the insurance to cover any type of home health care and no one is in a position to be able to stay with her full time. 

Does anyone have any experience with side effects related to a glioblastoma that would give me any insight as to what to do?  Also, how did you navigate the maze of caring, long term, for someone with this condition? 

Any help is appreciated. 

Wow, that is rough. So sorry to hear this. I wonder if it's radiation damage. Scary, when the tumor is not growing, that function goes downhill. I am not there to assess nor am I a professional but it does sound like she needs a fulltime caregiver or maybe she could be at an adult day care place. I would call the county agency on aging, and the hospital social worker, the church, everywhere I could think of for help and ideas re. resources. I'm sorry to imagine your worries. It might not be safe at all for her to be alone.

Hope there's a better day ahead.

Sarah

mother of Andy 27 dx gbm/pnet 1/09

if your mom has life insurance...check with american cancer society re: fifth season ....a company that gives loans against life insurance..this is not where you sell the life insurance ....you control what amount you use of the portion you are approved for and don't have to use it if not needed and the balance remains in effect for the beneficiary...and also check if the policy has an excelerated life benefit that will give you a portion of the life insurance now to use for expenses such as someone to be with your mom...either hired help or in our case i have taken a leave from my job to care for my husband and enjoy our time while he is able to be up and about...he has stage iv colon ca...chemo not working...trying different chemo this week...hope this helps....i did not know about this..american cancer society helps alot just ask them for any help they know about

My dad had a recurrence and then a rapid decline several weeks after that.  They did an extra through MRI and found that the tumor had not grown past the first recurrence so they concluded it was a combination of the meds, that the tumor was in an eloquent area of the brain and general underlying conditions. 

We attempted home care on our own and then with a nurse but finally had to go to a hospice.  We were upset about having to do that until last Wednesday.  Massive blood clot that required morphine and a seizure that lasted about 7 hours made us thank for there was a doctor and nurses there to deal with it. 

Having said that, before we made the step we tried every thing.  Changed amounts, changed the medications, etc to rule that out.  The reason was last April and without much reason, his entire right side was paralyzed.  Increased the steroids and not full function until the recurrence in August.  

Good luck.

    I'm somewhat confused. Have you recently been to a Dr. visit w/ your mom? It seems to me that if she's having the side effects your describing, something must be going on. I may be wrong, but I've never heard of glios being in remission.

    What type of medication is your mother taking? My dad and I used to be in charge of my mothers medication, we always had to really try hard to keep track of everything. I can't imagine any GBM patient doing it on their own. How old is your mom? I'm sorry for all your going through.

My dad had the same kind of symptoms last week and was in the hospital for three days.  They chalked it up to seziures and put him on trip of steriods and Kepra.  The doc says he should recover.  When admitted to the hospital his blood pressure was very high and did not even know his name.  I was scared to death but again he has recovered.  I really think the key to his treatment has been finding the right doctor.  I don't think just any hospital can treat this beast.  It scares me that he is home alone sometimes.  I have been thinking about one of those medical aleart things.  I hear they don't work but it may be a piece of mind for me.  I feel your pain....hope it gets better for you.

That's a good idea up there about using the life insurance policy. Also the medicalert... just wanted to say that I bought my son a bracelet just in case he ever collapses ANYWHERE. It has his name on the outside, my cell number and also the words BRAIN TUMOR on the inside. I make sure I have my cell with me and charged up, always! I can tell the EMT's or whoever what meds he is on. My mom wears one for her diabetes in case of diabetic shock, and we thought it was a good idea for Andy too.

Good luck!

Many, many times these things can be caused by imbalance in hormones (radiation fries pituitary), seizure activity, or non-tumor swelling.  Talking to docs is a must.  There are usually options to help with symptoms, but you have to be proactive and asserting in getting answers. God bless, janni (wife of Steve, gbm 11/07)

Thank you everyone for the great feedback.  I appreciate it very much. 

She is actually in the hospital right now because the confusion got that bad. 

They haven't really figured out what's going on, but we're getting a second opinion tomorrow because they want to just send her home till it happens again. 

Sarah - great idea on the bracelet.  I'm going to get her one tomorrow!