being the caregiver

My father had this first surgery on April 20, 09 a day I will never forget.  I just knew my mother would take the back seat to all of this and I was right she did.  She feels like she does everything but in reality does nothing.  My dad has been nothing good to her his whole life and deserves so much for.  As for me not being able to fix that problem I have stepped up.  She as only taken about 4 days off and left a few days early from work.  She was not even with him at the time of surgery!  It was me to have to deal with the hard news....  I am a mother of three young boys and work 5 days a week, I don't mind doing these things for him but I miss so much time from work my kids have spent many days with sitters.  I love my dad to death and would and will continue todo everything I can do to help him.  Second tumor on MRI in August....  The second tumor controls his speech. He does not remember simple things, had to stop working, and has become very sad lately.  I have seen a strong man become so week in the last six months.  It's weird he still is the same person I remember but in a different way.  I grew up and never have really seen my dad cry only about twice but now it's been more than ever.  I know it makes him sad my mom takes the back seat and I know if the tables were turned he would do every step with her.  She seems like it is so hard to make sure he takes all of medicines..it drives me crazy.  For the sake of the future I say nothing because it's not the time.  I know him being alone all day is driving him crazy.  Just like very one else I am sure I always hear "why is this happening to me"  Since the beginning he has been in and out of the hospital.  He cries when he goes back in and for appointments.  I wish I could do something to help take his pain away.  I just wish and pray he would have good news just once!  I also pray he makes it through the holidays with out any issues.  I am exhausted mentally and physically but I will it going for my father.  I wish there was more I could do.......Please pray for him!!

Dear vic01,

I am so very sorry for what has happened to your father and that it has fallen to you to deal with his issues.  I can only say that things have a way of evening out and that one day your mother will get hers, so to speak.  When your father's ordeal is over, you will be proud of yourself for having stepped up, despite all of your responsibilities as a wife and mother and full-time employee.  You can face yourself in the mirror and know you did all you could for your father.  You are a good daughter and an excellent person.  Be proud of yourself; life will take care of your mother.

God bless you.

Joan L

You know one of the hardest things is my kids may never get to know the man he is.  They are so young without concept of death and my father loves them all to death.  I try to shut my mouth and complain to everyone else what is going on because it's not the kids problem.  Even that she has not been around for help they still see her as a grandmother and what ever happens I will always keep it like that.  I know it will be hard and like said what goes around comes around!!!  Thanks for the uplifting words I just need to vent at times

I'm so sorry. Sometimes people deal with horrific things by not dealing with them.  It's denial, and feeling helpless and hopeless.  My husband's family rarely even calls him to ask how he is. I know they love him, but they don't offer much in the way of help.  My family steps in whenever possible to lend a hand.   I think it's because my husband's father died of cancer at the age of 42, leaving behind a young family. Perhaps all of this is a bad reminder of all of that, maybe they can't bear to see the past repeat itself with all of the struggles that go along with battling cancer.  I think many families go through this, there are some members who turn away and can't deal with all of it.  

Try asking your mom for specific things; sometimes people become very overwhelmed and don't even know where to begin.  You're a wonderful daughter, and he's lucky to have you. 

My condolences to you and your family on your father's illness.  Has your father considered antidepressants for his daily crying?  It won't help the illness, but help him face his daily challenges with more strength and composure.  Perhaps your mother is totally scared of his growing dependency and doesn't want to lose what she has that is hers: job, financial security-- she may imagine she will be by herself in the future and doesn't want to lose everything she needs to take care of herself.  If you weren't there stepping in perhaps she would be forced to do more-- you are really carrying the burden that she should be carrying.  Your kids need you too, and you are in mourning, anticipating your father's death.  Caring for him is probably helping you mourn him too.  You are really benefiting from it I would imagine, even though it may not feel that way now.

God bless you.  Jeanne

I am so sorry to hear about your father.  My mom was so wonderful when my dad was sick...it makes me sad to hear of a wife that is having so much difficulty dealing with it.  I am sure a lot of it is just her way of coping with knowing her life partner has such a debilitating disease.  I now take care of my mom who was diagnosed with a GBM like my dad's and I feel the frustration of having the sole caregiving for her.   I have one sister and she has small children so I cannot really call on her at this time.  My children are grown and so my schedule allows me to be able to take care of her. 

You will never regret one day of the time you will spend with your father.  I drove over every weekend for 7 1/2 months to relieve my mom and I LOVED every minute I had with him.  Mom would say that about Thursday he would ask when his "Crissy" would be there.  It was such a special time for us. 

You are a wonderful, strong daughter.  Try to focus the most on the time you have with him and not the things your mom is missing out on by not being there.  You will be the one with the precious memories to carry in your heart forever. 

God bless ~

Cris

I`m so sorry that you are carrying such a burden. As many of the messages have expressed, you will never have any regrets about time spent with your Dad. The children will not be traumatized forever, believe me.

My sis has just had her second surgery in three months (dx 7/28/09) Her GBM is horribly aggresive and we were just told that she has 6 weeks to three months left. My sister and I are her caregivers. Her husband has also taken a back seat from the beginning. She can`t  talk with him about her fears and basically  he has abandoned her emotionally and physically. We drive an hour just to go the the grocery market and do laundry etc. The guy does NOTHING!!  It`s very frustrating and I`m becoming filled with rage over it. The bottom line is....we will not let it affect our love or caring for my sis. We smile and work around him (literally).

  You are doing a wonderful thing, not only for your Dad but for you as well. No matter what happens, I can gurantee that you will look back on this someday and have not only no regrets, but joy for the very special time spent with him.

Take care sweetie,  you have many people applauding you ang being with you in spirit. With love, Marilyn`s sisters ")

Vic I'm so sorry for the heartache and the logistical challenges you face every minute. But as the others have said, there is love and joy in your life too. And what a great role model you are for your kids! Love love love what you are doing.

Reading so many stories about abandonment and frustration, I smiled (sadly) there should be a Caregivers Anonymous like Al-Anon... I'm not totally real about this but the POINT is that we have to let go of the things we can't change, and live our lives with love and kindness. Don't let it change YOUR good heart. Illegitimi non carborundum.

Serenity and love, from the place inside where it keeps flowing, no matter what...

Sarah

mother of Andy 27, dx gbm/pnet 1/09

Hello,

I am sorry to hear about your father and everything you are going through, it's such a heartbreaking battle.

I am sorry that your mother is not stepping in as she should, she will probably regret that. You are stepping in and doing everything you can and your father is lucky to have you.

Jay was diagnosed with GBM in April. I immediately took a leave of absence from my job because he needs 24/7 care and I want to be there for him. The family lives 1200 miles away, except for his nephew who is 30 and lives an hour away and has been no help at all. Jay has done everything to help his nephew, but his nephew has been no help to me at all, hardly visits and never offers help. I have no use for him, I have taken care of things on my own and with the help of my close friends.

I agree that you should talk to your dad's doctor about getting him on some anti-depressants that should help lessen his tears, but they do take a couple of weeks to get into his system.

I wish you the best and hope your mother wakes up. Please come to the website when you need to vent, we are all here for each other. I will keep your family in my thoughts and prayers along with the others battling GBM.

Take care,

Lori