Need some perspective

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Need some perspective

by marfunk84 on Tue Dec 04, 2012 11:11 PM

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Hi all. I feel guilty thinking this, let alone writing it here when so many of you are in much more challenging positions than I am, but how do you all cope with the mental/cognitive/personality changes brought about by BTs? Although my husband's decline appears to be more likely "treatment effect"(-Ha! What a nice and tidy euphemism for brain damage!), than tumor progression, it nonetheless has brought about significant changes in him. In fact, the BT has robbed him of everything I used to rely on/admire him for: his reasoning, judgement, organizational skills, motivation--he was everything I wasn't! I now find myself in a completely different role in our family and, to be honest, it pisses me off! A lot! And there are times I take my frustrations out on him, which I feel terrible about. The plus side, though, is that his short-term-memory is shot, so if he's temporarily upset, it remains just that- temporary. My STM, however, is fine--so the guilt remains. I feel so sad looking at the person he's become and comparing him to the person he was a mere year ago. I know I should be greatful just to have him alive--he's approaching his 5 year anniversary--I just no longer feel like he's the person I know anymore. Any insight/suggestions/commiseration/admonishment is appreciated.

RE: Need some perspective

by mollie924 on Wed Dec 05, 2012 12:37 AM

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 I know exactly what you are talking about.  I get frustrated also because my husband doesn't have the wit, humor, long term memory or organizational skills he once had. I am always concerned that if my memory starts to decline than we will both be in bad shape. When I get frustrated I then start to think of how very difficult it is for him because he knows his memory is not good and then I feel the empathy set in that I should have in the first place. As Charles Swindoll wrote - "Life is 10% what happens to me and 90% how I react to it."

RE: Need some perspective

by dbrinker on Wed Dec 05, 2012 02:16 AM

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Oh my I know just how you feel and I as the Caregiver have been going through this since May 2012 at times.  We use to ride motorcycles and he built his own house now he can't remember to take his own pills even when I put them in front of him.  He is angry one day and sweet the next, I keep telling myself he isn't the same man and that nasty tumor started all of this but I'm drained at the end of the day and also live with the quilt.  He remembers things that happened 60 years ago but has trouble day to day.  Thank God for good friends who get me out of the house and also take him to lunch and Xmas shopping.  It's hard oh so very hard but we must go on...In sickness and in health till death due us part.  I too try to be strong but know how important it is for us to take care of ourselves.  Take care you will be in my thoughts.

Diane

 

RE: Need some perspective

by tromda on Wed Dec 05, 2012 02:25 AM

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Holy cow, Marfunk - have you been reading my mind?   Some days I get so tired of being scowled at, snapped at and the subject of his paranoia.  About once every two weeks, he has a good day....I live for those.  I guess it keeps me going.  Hang in there, you are not alone in your feelings.

RE: Need some perspective

by marfunk84 on Wed Dec 05, 2012 02:35 AM

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Thanks for your response. I guess the plus side for my husband at least is he doesn't remember the man he used to be. He actually really likes his life now-- even though it's the complete opposite of the life he once lived. You're in my thoughts as well! --Kim

RE: Need some perspective

by marfunk84 on Wed Dec 05, 2012 02:40 AM

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Sorry--should've read "thanks for your responses". I don't know about you all, but one of my biggest obstacles surrounding support systems(other than the obvious withdrawal of close friends that comes with a cancer diagnosis)would have to be physical appearance. I hear from people all the time how "healthy" my husband looks---which--compared to the stereotypical concept of a "malignant cancer patient", he does. What they fail to see(until they try carrying on a sustained conversation with him) is how unhealthy his mind is. Have you experienced this as well?

RE: Need some perspective

by phyllischarles on Wed Dec 05, 2012 03:43 AM

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ok then I am not the only one...He snaps and raises his voice to me.  I have told him that I would leave him if he continues to yell at me..(then I felt so bad) I have this "thing" about being yelled at. (especially in public) He is normally so self contained.  I have to remember that this thing is already taking over this man.  I won't be able to stand it if he becomes mean.  This is one of my fears that we will no longer love each other when this is over.  I am already getting bitter about this and its not his fault.  I want to make whatever time he has the best I can possibly make it.  We used to have so much fun giggling and laughing at each other.  We are only three months in...I don't want us to fall apart..we are all we have.

RE: Need some perspective

by phyllischarles on Wed Dec 05, 2012 03:45 AM

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oh no....how long has he had this diease?  I'm am already seeing a psychiatrist to help me to cope.  I really hope meaness doesn't come into the picture as well.  I am sorry for you.

RE: Need some perspective

by phyllischarles on Wed Dec 05, 2012 03:51 AM

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Yes, I have, Charles looks great!  But they arenot there to witness the sniffling from his cries of pain and his grief over what has happened.  As well as his grief of not being able to provide financially for his family anymore.  We will have to downsize in order to battle this thing.   He wanted so bably to be able to keep his daughter (10th grade) in the school she is in but unless we can find  something more affordable in this neighborhood its not going to be possible.  We live in a expensive area.  But cutting down to one income as I am sure alot of you have can be devistating in its own right.  His one stomach pill is 99.95!  Geesch!  Not covered by Blue Cross or Medicare...I'm just venting again and mad as heck!!!

RE: Need some perspective

by phyllischarles on Wed Dec 05, 2012 03:52 AM

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But what they see on facebook as he posts a pic everyday on his way to radiation, is still a good looking man wearing a Santa Hat.  He puts a good face out there.  Bless his heart.

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