No clue what to do! HELP

My 80 year old mother was just diagnosed with grade 4 glioblastoma.  She is a very young healthy active 80.  The tumor is inoperable and is on her motor skills strip.  She is paralyzed on the left side and considerable weakness on the right.  She is undergoing radiation and temador treatments.  She just keeps telling us she wants to die.  Let her go.  We can't seem to do this.  The doctors say this may bring her a better quality of live but just a few more months.  I keep reading that this does not have to be a death sentence.  My father refuses to stop treatment.  Should we try and convince him to give up or is their hope and we try to convince mom to keep fighting.  She has been bed ridden for 4 weeks now and refuses physical therapy.  Is there hope!  Do we continue or stop.  It is so sad to see my parents hug and cry all the time.  They are really the "Notebook" couple from the movie.

Realistically, GBM is always a death sentence. It's just a matter of how long with all of us. Mortality rates haven't changed for over 20 years. Honestly, age is a huge factor and inoperability also.

I, of course, would opt for teatment, but I always think the decision should be with the patient. As hard as it would be for you and your Dad to lose her, it would be equally hard to watch her suffer. Are all of you prepared to care for her every need indefinitely? If she is already paralyzed on one side it would take a very aggressive treatment to even start dealing with that. Some treatments are harder than others, and I'm only 54. I guess it depends a lot on what they're thinking of treating her with. Do you know?

My heart goes out to you all. These are hard decisions to say the least.

Hello, I am so sorry about your mom AND dad (as they are in it together). I can completly understand your dads refusal to give up AND also understand your moms want/need to stop fighting. I think it is up to your mom to help your dad let go so that she may be at peace. In the end nobody really wins, it's about the time we had and what we did with it that matters. Stay up and stay strong but always remember it's okay to feel extreme sadness.

Your mom is under a lot of stress both physical and mental and emotional.  If she doesn't want to keep fighting this, she shouldn't be forced to, as it is her body and ultimately her decision.  However, she may not be in a situation where she is well able to communicate how she feels to your dad.  Find time to talk to your mom alone, ask what you can do to help her gently and lovingly but firmly prevail over this decision.  Maybe ask her if she would like to dictate a letter for you to write out and give to  your dad.  That way he could read how she feels, and be afforded the chance to digest it in private.  Then encourage him to go talk to her.  Remind him that she may not always be with him physically, but she will ALWAYS be a part of his heart.

Sandy;

I am so sorry, what a sad sad situation.  Maybe you could call hospice and have a therapist or social worker come and interview your Mom to see if this is really her wish.  If it is then the social worker could work with getting your Dad and you to the point of acceptance.  I dont know it is all sad. Just a thought.

Hugs, Donna, Rob's wife

 

My heart goes out to you. This disease itself is such a slap in the face...but to see a person who has been like your mother become a shell of a person overnight is like being slapped down and then continuously kicked in the gut.  My parents both are GBMers and I will admit that from most of the information I have read that it is much, much harder on the elderly.  My dad was 71 and my mom is 75. 

Mom and I have talked at length after losing my dad last year and then receiving her diagnosis this past June.  She has commented about how dad had no quality of life...he was like your mother...paralyzed and bed ridden 2 days after his last radiation treatment...but it was clear that as long as he wanted to fight, she was going to fight with him.  I guess what I am saying is that we always have to keep hope alive until the last breath.  We didn't even make the decision to call Hospice until the day my dad actually died. They just never wanted to give up trying to beat this monster. 

My mom just finished her first round of the temodar last Friday and she ended up in the hospital on Monday.  I don't know what we will be facing when the time comes for round two...but I do know that if she wants to fight...I will fight all the way with her!!  I have to respect her decision.

I don't know if anyone will ever know if they have made the right choice in this journey.  I do know that the most important thing I have learned is that we just have to love the person through every step of it and do what we think is right at the moment.  Every minute has now taken on a new meaning to me.  Every smile I see on her face and every word that rolls from her lips are being hidden in the corners of my heart so that I will always have this beautiful time together we spent together safely hidden to reflect on later in life.

I wish you the best in deciding what to do.  Just remember to love her as if every minute is the last.  Your heart will help you know what's the right thing to do.

God bless ~

Cris

 

That is really good advice, Donna. An outside, objective person is probably what your family needs right now, Sandy. So sorry that you are dealing with this. I think we all believe that when our parents get to this age in their lives they have bypassed all of the dreadful illnesses and will enjoy those senior years as they so dearly deserve.  Keeping you in my thoughts and prayers.

H

Husband dx GBM IV 2/09

My mother was diagnosed at 76 yrs. old. She was also healthy and active. I am so amazed right now. My parents were also the couple from the notebook!!! I totally understand your father not wanting to stop treatment. This is the woman who has probably dedicated her whole life to him, and stopping treatment probably seems unthinkable. My mother started radiation walking into the hospital. Within a couple of weeks, we needed a wheelchair. I know every case is different, but if i had to choose now, i would consider quality of life first. When my mother was in hospice, they actually had an IV on her. Hospice never gives IV's. The nurses did it for my father. Not giving my mother something to eat or drink seemed so wrong to him and us. This was the woman who dedicated her life to us. So the nurses gave my mom an IV w/ a very slow drip. It didn't prolong her life but it gave us comfort. This decision will have to be yours, but remember, it is her life. Enjoy every moment with her. Especially if she is still talking. My prayers are w/ you and your family, Maria

 

So hard... My husband is gbm iv at age 56, very healthy guy, picture of health, and now after treatment, thin, weak, wobbly and hoping for a few years.  They are right, it is a death sentence.  Who are we kidding, but God is good and we are not in charge.  However, if she that old, it will be hard on her.  That medicine is really really strong.  Isn't she ultimately in charge of herself.  Prayers, Roxy

Having just lost my father a week ago today to this disease and reflecting upon it, at the funeral home I would have been willing to try magic dust sold by a traveling salesman to attempt to raise him from the dead.  That was until I realized how selfish it was because in those last few weeks, he had no quality of life.   He had worked a desk job his entire life but in the last 14 years of retirement, he was active almost every day.  

We eventually had to make the decision to stop all treatment other than for his pain and anxiety and we were "lucky" that the end came quickly following that decision.   It is hard to give up but it is more cruel to force someone who has accepted the inevitable to merely suvive in order for someone else to hang onto a shell.