Unraveling

Hi Everyone,

I'm sending out a 911.  It's been especially difficult over the last few days/week and I'm losing my ability to stay even.  My husband (49) was dx with gbm 10.08 and has just learned it is in the CSF and has a spot on the spine.  He just completed radiation on the spine yesterday.  His brain MRI also showed some progression.  He has been doing well re symptoms with only some hand weakness and back pain.  However he is beginning to show a lot of confusion at times and verbal abuse especially with our 2 kids.  This is almost unbearable.  While I know this is common, and it is the cancer, it is painful beyond words to watch.  Our son is nine and daughter is 11 and they are wonderful children who adore their dad.  I am living a nightmare.  A year ago, we had an ideal life and now the layers of problems seem to be more than I can begin to ever deal with.  I adore my husband and to watch him endure this pain is horrific.  I feel helpless and dark.  I had been an optimistic person before all of this and now I see only tragedy everywhere I look.  I want my kids to stay sunny as they are now.  Everything is uncertain and out of control.  Thank you for listening to this stream of consciousness.

Kim

Your are truly in need of some encouragement and support.  Is there a support group for caregivers in your area?  Does your husband's doctor have a chaplian associated with his program or a social worker?  They will be able to give you info on what services are available for you and the kids to help you all cope.  A support group for your husband might be in order as well.

I am so sorry to hear of what your family is going through.  When my husband got a bit testy, his NO  said it would be better to replace some of the brain chemicals that get messed up with all that goes on and put him on celexa.  He went back to acting normal.  He does get a bit anxious when there are a lot of people around or children and his NO explained that between surgery and chemo the brain processes everything slower and when there is a lot of stimuli it gets very overwhelming for the patient.  It may be that the kids are just being kids and your husband can't handle all of the activity.  Talk to your doctors, they should be able to help.

I sent you a private reply.  Our stories are so similar. 

Kim - I can so feel your pain, and I'm sorry that you are going through this. DH Tom, 55, was dx 9/08. I had nearly left him because his anger and verbal abusiveness had gotten so unbearable, esp on the kids, who were 10 & 11 at the time. I have never feared physical violence, but the downright nastiness was awful. I know every situation is different, esp with brain tumors, but I can tell you that Tom has become more passive, not more aggressive, as this disease takes its toll. The kids are aware of what's happening and we have never avoided using the word "cancer".

Do your kids get to spend time away, either with grandparents, uncles & aunts, or even sleepovers with friends? I'm not saying to pretend the elephant in the room isn't there, but my kids, anyway, have greatly benefitted from efforts to get them out of the day-to-day slog of criticisms,  unkind comments (remember: with no impluse control, if Tom thinks it, he says it out loud), etc. 

If you don't have a support group yet, can your n/o or social worker help you find one? You have needs, too, and making sure they are minimally fulfilled will free up so much more of yourself for your husband. I just mentioned in another post a free online site that our doctors told us about -- http://caringbridge.org. You can set up an online journal to tell people what's going on, and they're able to sign a guest book, I find the writing cathartic, and reading the guest book to be energizing. It reminds us both of how very loved we are. I highly recommend it if you haven't already started one. You can have it open to anyone, or you can limit it to friends and family; you can update it as often as you like. I don't think there are any size limits, but I am no expert on the site. Just a user.

...I just pressed "send" when I meant to press return!

 

I wanted to add my very best wishes and prayers to you, your husband, and your kids. I've added you to my "list". Please take care of yourself -- Linda

You might want to ask the NO to refer your husband to a psychatrist. My mom was having the same kind of problems and going on Zyprexa really helped her. Hang in there! His anger is just the tumor talking. It is not him.

Kim, There are definitely meds for this.  Also, some of radiation and chemo can have this effect, as well as hormone imbalance b/c of pituitary changes.  Call docs right away as this is important for the well being of you ALL.  You'll be in my prayers.

jan

Hello Kim,

I am sorry for what you and your children are going through. It's heartbreaking to watch someone you love battling this monster. I feel terrible for your kids watching their father go through this. As you know it's the tumor talking, not your husband, but knowing that does not make it any easier to watch. I would recommend talking to his doctor, there are medications he can take to help his agitation and confusion. I understand what you are going through Jay was the same way, saying things to me out of anger. His agression was due to Decadron, the steroids will have that affect, so I reduced his dosage gradually and that helped. That may be something to look into. He is also on anti-anxiety medication and anti-depressants, which help as well. He is back to his friendly self, but the confusion is still a problem. I know there are medications they can give to help this too. I haven't had him put on anything for this because their are so many meds and side effects so we are managing.

I agree with the suggestion in one of the replies to give your kids some time away, sleepovers with family or friends. Also, explain that their father cannot help the way he is behaving and that it is not him. I don't know how much you have told them about the cancer, but you can tell them his actions are due to medication if that would be easier.

I will keep you in my thoughts and prayers along with the rest of us affected by this terrible cancer.

Please keep us posted.

Take care,

Lori

To All of You - THANK YOU!  Every post is a gift and I could not make it without your encouragement and support.  I think these are wonderful suggestions and knowing that we are all in this together brings me strength in ways I never imagined.  I appreciate each of you taking the time to reply to me.  I am encouraged again.

Thank you. Kim