Hospital stay after first monthly temodar

I am so confused right now.  My mom has GBM IV and received the standard 30 radiation treatments along with Temodar and did fine with it.  She has now had her first round of monthly temodar.  She finished up on friday and when we went to the doctor monday her b/p was 68/40...indicating severe dehydration and he admitted her to rehydrate her.  Her hemoglobin was 7.2 so she received 2 units of blood.  My question is...how do you keep them hydrated during chemo?  I couldn't even get her to ingest the pills with the required 8 oz of water.  By night three, i started giving her 1 pill at the time so that by the time she had taken all 5 she might have gotten a decent amount of water in her.  We have ended up here for 5 days right now and possibly might be dismissed tomorrow.  She is 75, has quite a few other medical issues, and it concerns me that if we are going to end up with a 5-7 day stay every month after chemo, that it might not even be a good idea to continue.  Dr said MRI is stable but that doesn't really tell me a whole lot.  With the unseen "fingers" that are lurking on the underside of the tumor, there is no telling what is going on.  From the things I have studied and read, she seems to be starting to "check out" (for lack of a better term).  

For those of you with elderly parents that have received the monthly temodar, I would love if you would share some insight that might help me understand a little more about where we might be.  My dad died of GBM IV in May '08, but his journey was completely different.  I was hoping that someone has experienced some of this and can help.

Thanks

Cris 

Cris, this sounds so hard. Can you figure out why she can't or won't drink? Did you say her swallowing was getting too hard? I wonder if there are other ways to hydrate, short of tube or IV. Would a straw be easier? Jello? Warm broth? I have no experience... just thinking someone must know!

Even though she is not presenting with end stage symptoms, she may be eligible for palliative or hospice which would certainly bring all of those comforts to her care. I read a lot about hospice services recently and (you probably know this, I didn't) a person can be in hospice if they qualify by being expected to die within 6 months, BUT you can go in and out of hospice. You go in when you need that care. You come out if you need therapy like more temodar. But even Avastin can be given as palliative care. Also, if a person survives the 6 month window, they can re-certify her for hospice again... at least the hospice group here is very flexible.

You know I don't mean to say that her time is up. But it seems like for her comfort there might be expertise in certain care settings that would really help both of you at this time.

When will you have a better sense of the tumor's status? It's soooo hard to just breathe through these long days.

Sending love and serenity ~
Sarah

I appreciate your response.  We are actually on day 7 in the hospital...iv's constantly since we have been here.  I am concerned when they dismiss her...the nurse even tried to talk to her about it today saying how important it is for her to get liquids in her.  We do try and use other things such as broth, gatorade, diluted cola...we have experimented with it all I think.  She just says she can't get them down. 

My sister and I have discussed hospice and just using it for short term to get her strength back up.  But if you mention the word...she freaks out.  She is certain that means the end is near.  We have tried to explain to her that we wanted to try it for a little while, but with her level of confusion she just doesn't seem to be able to process it.   I am going to check on the 6 month window thing. I am not sure exactly the stipulations on our hospice...I just know that the dr said that they certainly don't want them in/out, in/out...on and on and on.

Her MRI presented as stable last week.  But like I said there is really NO way to know what's going on deeper in the brain.  I wish they could see past the old tumor site, but that's not possible. 

As for breathing....sometimes I think we all probably forget to with all of the stress.  I am just thankful that I do have each day with her...every minute counts!  That's what makes me keep on keeping on!

Cris

I appreciate your response.  We are actually on day 7 in the hospital...iv's constantly since we have been here.  I am concerned when they dismiss her...the nurse even tried to talk to her about it today saying how important it is for her to get liquids in her.  We do try and use other things such as broth, gatorade, diluted cola...we have experimented with it all I think.  She just says she can't get them down. 

My sister and I have discussed hospice and just using it for short term to get her strength back up.  But if you mention the word...she freaks out.  She is certain that means the end is near.  We have tried to explain to her that we wanted to try it for a little while, but with her level of confusion she just doesn't seem to be able to process it.   I am going to check on the 6 month window thing. I am not sure exactly the stipulations on our hospice...I just know that the dr said that they certainly don't want them in/out, in/out...on and on and on.

Her MRI presented as stable last week.  But like I said there is really NO way to know what's going on deeper in the brain.  I wish they could see past the old tumor site, but that's not possible. 

As for breathing....sometimes I think we all probably forget to with all of the stress.  I am just thankful that I do have each day with her...every minute counts!  That's what makes me keep on keeping on!

Cris

oops! hit the button twice.