Brain Cancer affecting Spouse's Personality

My husband was recently diagnosed with GBM and our relationship is strained.  He has been mean to me (swearing, accusing, criticizing, interrupting).  I don't know if it would be considered verbal abuse.  Maybe it is just his frustration.  I am not happy with the change in our relationship.  He has no desire to connect intimately with me (even cuddling).  I am wondering if this is normal and if it will improve.  I also wonder how much I should tolerate.  At what point do I draw the line? 

Unfortunately, this goes with the diagnosis.  Has your husband had surgery or is he even able to have surgery?  What kind of treatments is he taking?  Where is your husband's tumor located?  The different areas of the brain control certain functions like memory, personality, senses, etc.  The location may have some influence in your case on his personality.

My dad's tumor was located in the temporal area.  When my mom was caring for my dad, he hurt my mother's feelings so many times...we just had to learn it was NOT the person you love talking...it's the tumor talking.  If you can keep that in the back of your mind it might just help you be able to remove yourself emotionally a little when he acts this way.  The weird thing was that there were times dad acted that way and then in a few minutes he would be like a child. 

The sad thing is they don't really realize or understand most of the time that they are acting this way.  I could see that when I was there with them, but it really is so hard as the caretaker that loves that person soooo much to have to endure this.  I am so sorry that you are having to experience this. 

Make sure and talk to you neuro-oncologist about this.  The best thing I could do for me was to surf, surf, surf the internet.  There are so many good sights for learning all you can learn about GBM.

Try these to start

www.abta.org

www.braintumor.org

I wish you the best. 

Cris

Thanks for the response andl links.

He did have the surgery.  Fortunately, he has not lost any functioning. He is just a little slow cognitively.  Otherwise, he appears fine physically.  The tumor was in the occipial lobe.  He hasn't started chemo/radiation yet.  He said some cruel things to me and I just asked if he needed time alone and said, "I know you're angry".  We have not been married that long at all.  Actually we were married this summer.  So this hit us really hard.  We don't have the long history that some people may be able to rely on.  I told him I would be here for him and can handle the disease and the treatments but I am having a hard time accepting being treated this way.  He treated the nursing staff the same way (or worse) in the hospital.  It is quite scary to me and I feel like I am walking on eggshells all the time.  I also fear that this may escalate when he starts chemo/radiation.  The most basic things I say (even kind things) are twisted all around as if I am the enemy.  It may be hard to talk to the neuro-onocologist about this alone but he may give us his email address. 

You can pursue this issue with the doctors... it would really help HIM to get the mood issues tamed down a little. It may be too much decadron or a keppra sensitivity.<<< BOTH KNOWN TO TRIGGER PERSONALITY ISSUES.

 In other words, it's very likely a chemical thing... of course combined with his terror which might not be the best thing for his outlook on life.

After you rule out those drug issues, he might benefit from something like Ativan, Klonopin, or Zoloft. LOTS AND LOTS of brain tumor patients take these things so that they can cope on a daily basis with the fearful task of trying to just survive. If he has never been willing to consider an anti-depressant before, I understand... neither would my son... but GBM kind of brought him to a new place where he finally said OK, give it to me, I can't stand this feeling.

I know it's really hard to live with someone who is going through this. He is apparently unable to imagine how hard it is for you. You might need a little help too Julia. I see a counselor and I have meds in case I need them. SLEEP is critical... do whatever it takes. Brain cancer is just about the worst thing that can happen and we have to find our coping mechanisms. It's awful because it's the brain, obviously. IT's like leukemia plus alzheimers or something. (The degree of the personality change is chemical plus the location of the tumor.) You lose the person you knew AND you have to deal with the medical nightmare... fighting on his behalf for him because he might not. THEN, add in the fact that almost none of your friends or family will have any idea how wild and crazy your life has gotten or how weird it is to live with someone who has lost it... it can make you feel very abandoned in a life no one wanted.

Again, HELP is important. I am so lucky that I have a counselor who knows a lot about both GBM and people who deal with terminal illness. Also I have friends who are hospice nurses who are kind of on call for 'if and when'. I fear my son's demise, which is out there somewhere, for his own terror and pain and heartbreak, but I do not fear a lack of support. We'll get through this somehow.

Write me a private reply and I'll send you my email address if you would like any other ideas. But first, I have to emphasize, check with the doctors about drug sensitivity... the decadron and keppra.

All hope, courage, compassion ~

Sarah

mother of Andy 27 dx GBM 1.09

How high is his decadron dose?  Decadron can cause aggression.  It's roid rage and a lot of people experience it. 

My husband has not become aggressive, but he is not the same person he was before surgery.  He is actually much more passive and apathetic.  Any personality change in your spouse is stressful, bewildering, and you're left feeling very lonely.  I'm sorry you're going through this, too.  All of the meds, trauma, etc. etc. etc. along with the diagnosis of cancer is the roughest thing to go through, and it isn't you, it's all that he has been through that is making him act this way.  That does not make it easier, I know.

I hope it gets easier.  Talk to his doctor about it, definitely. There may be things he or she can prescribe to help.

He is tapering off the decadron and should be off it Tuesday (I think).  He controls his own meds but I need to check up if he needs to continue taking it after Tues (his surgery was 10/30).  Do they have GBM patients take it again during chemo or radiation? We are meeting with the onocologists tomorrow so I am just learning all of this.

He was in a really good mood this weekend and was affectionate.  Not to sound whiny, but I wish we still had a sex life of some sort.  If that could happen and his mood would stabilize, then I think we could be stronger dealing with the cancer.  Lack of intimacy and verbal aggression are not a good combination for a marriage.  And I know he wants me here with him as he goes through this. 

It is a very sad and stressful and lonely thing to deal with.  We are trying to encourage others to treat us normally.  We notice a few people wanting to be melodramatic or wanting me to express my inner emotions.  I don't feel the need to do that for friends and family to prove my love or devastation over this.  I hold my head high, act strong, and smile.  I am trying to enjoy each day instead of letting the cancer take it from us.

I really appreciate all the feedback and support! Hugs!

Hi Julia. I’m sorry you have had to join this special club.  It is difficult and must be even more so being a newlywed.  My husband was dx with GBM on 5/1/09.  He is 50 yrs old and we are experiencing a lot of the same problems you have described.  As others have mentioned, that seems to happen frequently with some of the many meds.  It is definitely a rollercoaster ride! 

I’m learning to appreciate his anger and frustration.  He hasn't been able to work since all this happened...he drives for a living and his vision, plus the seizure prohibit him from getting behind the wheel.  He hates all the meds.  He hates how he feels.  He hates the idle time.  His social life is virtually non-existent.  His family has all but abandoned him. He complains about being bored, and there's nothing to do, but he never wants to do much or go anywhere either.  I think he hates feeling so dependent on me which might be some of the reason he blows up at me sometimes. He isn't sleeping, his moods are horrible, and he simply can’t do everything he wants to do.  Does it get better?  Maybe…maybe not.  He is getting better at thinking things through before he flies off the handle, sometimes.  Does intimacy return?  Again…maybe…maybe not.  It hasn’t returned for us.  I have to admit, my desire has diminished somewhat.  He isn’t the same person.  His image of himself has changed so much.  He has always been a very confident and self reliant person.  Now, he’s gained a lot of weight, his personality is different, and he doesn’t take the same care with his appearance as he once did.  He’s no longer flirty.  The twinkle in his eye isn’t there anymore.  Don’t get me wrong, I love him with all my heart, but the spark isn’t there right now.  Maybe as things move forward, that will change.

Don’t discount the help that friends and family can provide.  They know and love you and your husband and can be a great source of comfort for you.  I know that “laying bare your soul” is a difficult thing, but you will have times when you truly need a shoulder to cry on.  Let them help.  Talk to those you love and trust.  Let them take care of you sometimes and take care of yourself too!

Keep coming to this site!  It is one place that has been a lifeline for me.  Nobody judges you when you vent your frustrations, and trust me, you will need a place to do that.  Many posters have incredible insight and many months of experience.  They really help me to feel "normal".

Breathe and put one foot in front of the other…

“Things turn out best for the people who make the best out of the way things turn out”

Peggy...aka Mrs Bill 

I forgot to mention...if you go directly to the brain cancer message board on this site rather than the caregiver thread, you will find a bunch of people going through the same thing...more specific information.

On Nov 11, 2009 6:14 PM MrsBill wrote:

I forgot to mention...if you go directly to the brain cancer message board on this site rather than the caregiver thread, you will find a bunch of people going through the same thing...more specific information.

I appreciate your honesty on this subject.  And I am sorry for what you are going through.  Just thinking that a month ago I had no idea what GBM was or anything...This is all crazy for any of effected by this.

Luckily, my hubby has been in a really good mood.  Decreased steroid use and acceptance of the situation has helped.  But I fear that the moods will return when chemo/radiation starts. 

As far as our love life, that has improved.  Not like it used to be but enough to appease me! :)  I have a hard time giving up the man that I fell in love with.  That is so hard to handle. 

I will definitely keep coming back here.  I appreciate all the input from others.

Julia,

Glad to hear that your husband's mood has improved. It could have been the steroid. My husband was really goofy on  it -- he saw his dead great aunt on many occassions.  Thankfully, his moods on the steroid were humorous.  I did not see any change in personality while he was on radiation/chemo. Sometimes when the patient is going through treatment they feel better because they are actively "doing something" to slay the beast. 

Glad to also hear that your love life has improved.  That connection is important (and fun). Don't be surprised if it wanes a bit during the treatments.  I am just going to put this out there since you mentioned your sex life in a previous post and are now saying that things are better -- use protection because your husband has some serious chemicals going through his body (your doctor may have already told you this so forgive me for being so blunt).  I think I am blushing, ladies :-). 

Hang in there, Julia. You are not alone in this. We are all here for you as you are there for us.

Holly

Husband dx GBM IV 2/09