Mother

Good Morning,

I went to see Mother last evening, and she seemed in good spirits. She wants to continue the radiation (14) treatments and the temodar. Her spirits are high in getting better. On my way home last night, I thought about something, maybe I shouldn't ask, but I must for my own self knowledge. What happens a couple of weeks before someone passes with this type of tumor? If all fells and she dosen't make it, what happens? I must know, I must be strong, please if you can email me and let me know what to expect....

Hi,

Sorry you are having to go through this horrible experience.  My mom was dx at 59 years old and passed away at 61.  She had a great year and some months before she began to decline.  She never lost her sense of humor and hope of a cure.  She passed peacefully and quickly.  My neighbor also had this disease and he also went peacefully.  The biggest sign we got she was going was her breathing. She was lying on the couch one minute and then the next she was breathing hard and  loud.  She passed away within minutes.  She had a wonderful life with so much more ahead of her.  I hope your mom is one of the lucky ones and beats this. 

Best. 

The best place to to go for info on late stages is the website:

www.brainhospice.com   it gives all kinds of symtoms from 6 weeks to 2 to 3 days out from death.  Your 2 replys before mine are unusual, I think, from other things I've read.  So much depends on location of tumor, whether it has been resected (removed), age, and each individual's unique responses to therapy, etc.  There are no hard and fast cases everyone is sooooo different, proving that each and everyone of us is unique just as God has made us. 

Some people have said that their patient has jumped all around the Brain hospice timeline as my brother, who I care for, has somewhat, but it's still a great reference and also suggests ways to verbally interact with our loved one that we might not think about otherwise.

Hope this helps,

Caregiver for brother, dx 9/11/07, 4cm. inoperable GBM, EBRT/Temodar, then 5 cycles 5/23 Temodar, tumor always stable according to MRI but he  has declined greatly, bedridden since Apr. 14, 2008.  Will probably start Avastin-CPT 11 soon. 

I would also suggest the brainhospice website, because it will describe a lot of common symptoms.  My husband has been showing most if not all of those for 4.5 months now so I would not necessarily freak if she starts showing some of the symptoms.  The timetable is not true at all for my husband.  I would also read the stories on the website.  They also illustrate how different each individual is.

Our doctor said often it will be a peaceful and relatively painless death if the patient goes into a coma which often happens.  However some of the brainhospice stories show how that is not necessarily going to happen.

 I found a little comfort actually talking through scenarios with our hospice nurse.  I am to call them if I become concerned, and they will come out day or night.  I have heavy duty medications on hand if he should have a lot of pain or distress.

Lately I have been listening to a lot of rough irregular breathing overnight (it's hard to sleep).  This has been going on for a month.  But I find if I give him oxygen his breathing settles down.  He has been diagnosed with sleep apnea long ago, so maybe that's all it is. 

I wish you the best.