GBM Caregivers Blues

Here here, CHEERS MY FRIEND !!

Since my 36 yr old husband was diagnost with GMB 5/2009, I gained 30+ lbs that had taken me 3 years, yes 3years, to lose and took 3 months to gain back.  Whenever he would eat, I would too, no matter what it was.  I stopped caring what I ate, and just ate.   Chocolate, fast food, everything that I had stopped before... I too need to get back to walking and taking care of myself, especially since I have 5 kids under 18 to take care of.  I haven't time to take care of myself, but I know I need to, sometime.....

Giving care to the care-givers, right on. I wasn't too bad at it, really, and I will continue to care for myself in bereavement. I woke up this morning, put on my running shorts, and that means at SOME point I'll be running, lol. OK it just started to rain so it's off to the Y. I would much rather be outside, because the SKY is so therapeutic, but oh well. Not too fast, not too long... maybe 3-5 miles at a time. I'm trying to make my skeleton last until I'm at least 75. There's nothing like it for endorphins, or as we call 'em: Happy Dolphins. I also lift, for metabolic support. Us ladies of a certain age need it or we can have BP and BS (that's SUGAR, Dave!) issues.

I also love a good netflix night, gardening, and cooking. And my rescue pups. 

I have this week plus two more before I have to go back to work. Anyone passing through southern Maine, let me know.

xox Sarah

I pack up the dogs and head to the trails. The peace, quiet, sunshine, water seems to calm my mind. It always helps seeing the pups so happy and carefree too - forever 'in the moment'!

And...I'm not afraid to admit that I always have a bottle of wine waiting for me when I get home! It's all about balance right??

Listen to what your body and soul need day by day.

With love, Alison

Dave - thank you a million times over for your kind words - you're a gem!

thank you for your post. 

Dear distancerunner:

I blow off steam with circuit training. I alternate machines and running, and I like to work out at a target heart rate that is between 80-85% of max sustained for 20-40 minutes, not including warm up, cool down, and stretching. March was a rough month: hubby was in and out of the hospital, his scheduled radio surgery was canceled, he entered hospice, and I had to go out of town for a few days. I only got to work out twice in March. April has been better. I've gotten in 3-4 times a week. I'm still feeling emotionally exhausted, but that's getting a little better. Physically, I'm feeling pretty good right now. 

I'm a musician, and I find that listening to music right now, and sometimes even playing it, is difficult because my emotions are so close to the surface. 

I've become more organized, and more frugal as a result of being a caregiver. We used to have a very carefree lifestyle, but no more. I've gotten good at budgeting time and money, as well as planning meals. These are things I will carry forward into the future.

 I've lost about 20 pounds. 

When I can't get to the gym, I do a lot of house work, home improvement projects, and yard work to blow of steam. 

Hang in there all you caregivers. Kudos to us !

I am a caregiver and a patient. In 3/2006 I was diagnosed with a Tectal Glioma. It is a low grade brainstem tumor. It was dx becuase I was having migraines 24/7. To make a long story short I have been through 5 neurologist and am now with a wonderful Neurologist who specializes in migraines. I am at a point where I have some quality of life and I am not in excruciating pain all the time. I did and tried many things to get here. I did it becuase of my now 8 year old. The love of my life. If it was not for him I would have probably given up. I still have headaches 24/7 but they are better than they were. I sleep when my son is at school. I am very lucky that my tumor is stable and may always be stable. My tumor is very rare and is even more rare in adults

Last Nov 2011 My husband was Dx with a GBMIV. It was in-operable and he can not drive. So I have to take him to all treatments and doc appts. And try to keep and 8 year olds life "normal" Basketball, cubscouts, playdates. Hubby comes from a large family and offer to help but they are in denial and do not want to hear the truth. Hubby is the baby of 7. One sister will come on her day off and take my hubby grocery shopping which helps a little and his mom will babysit and help clean the house and do laundry.

My hubby does nothing for himself. He has not read one article on his tumor or made one doc appt(and yes he is capable). He will do things around the house but if he sticks his head in the sand his tumor will go away. 

So coping.... I do see a social worker once in a while my son see the same her too he thinks she is a "friend". And I can talk openly to my mom and one friend who is here for me. 

But his family seems to forget that becuase Dave go sick it doesn't mean I got better. And they keep saying to me well you don't know what it feels like to be told you have a brain tumor. And I say ahhh Yes I do. and for a long time I did not know if I was dieing. There was no baseline. And the stupid Neuro at the time did not bother (or no enough) to tell me it was low grade and what that meant.

So coping....... One Day... One hour.... One minute at a time

I can't cry becuase it is a trigger for my migraines.

And I hug my son. 

Oh yeah my 13 year old Beagle just had a huge tumor

removed from his neck and he has an aggressive form of cancer.

Sorry for all this I am new and just really needed to vent.

Katie

Dave,    That was an absolutely beautiful tribute to all of us caregivers and I personally Sooooooooooooo appreciate it!

I thank all of you for your wonderful words.  I need to get off my butt and just start being more active.  My problem has been when I do anything my patient does not understand.  She does not want me out of her sight.  She is a very difficult woman and I guess from what her family tells me she always has been.  I find myself becoming bitter because she is not even related to me, she is my husband's relative.  She has no children only neices and nephews who live a 2 day drive from us.  They do not seem to understand or care that I have two children that I would like to visit and I have health issues of my own.  I need respite and I need it now.  It has been over a year since I have been away from this. Again, thanks for letting me vent.  Now I will see if I can get myself together and come up with some solutions to MY problems.