TWILIGHT ZONE

TBOB
TBOB Member Posts: 19
edited March 2014 in Caregivers #1
HI EVERYONE! I'M ONLY THREE WEEKS INTO THIS JOURNEY AND AT TIMES I FEEL LIKE I'M HURLING THROUGH SPACE AT LIGHTENING SPEED AND AT OTHERS TIMES JUST FLOATING AIMLESSLY. MY HUSBAND HAS BOT CANCER BUT STILL UNDIAGNOSED. GOIND IN AM FOR SECOND BX TOMORROW.I'M WRITING TO YOU TODAY BECAUSE ..... EVERYDAY I WAKE UP AND SAY TODAY IS GOIND TO BE A GOOD DAY. I'M GOING TO BE NICE AND NOT GET FRUSTRATED AND EVERYDAY I GET FRUSTRATED AND FEEL LIKE A WITCH. MY HUSBAND HAS ALWAYS BEEN HAPPY GOING TO WORK COMING HOME AND GOING TO WORK AND COMING HOME.HE HAS ALWAYS BEEN HAPPY IN HIS OWN LITTLE WORLD AND EVERY ONCE IN WHILE TAKES AN ACTIVE PART IN LIFE. WELL, NOTHINGS CHANGED. HE IS IN HIS OWN LITTLE WORLD AND I AM NOW TRULY WHAT MAKES MY FAMILY CLICK. I WAS INDEPENDENT BEFORE LIVING LIFE WITH MY KIDS AND ACCEPTING THAT MY HUSBAND PARTICIPATED IN LIFE IF I PRODDED HIM ENOUGH. WELL NOW I JUST DON'T KNOW IF I CAN TRULY DO THIS LITTERALLY ALL BY MYSELF. NOW EVEN MORE HE HAS CHECKED OUT. STILL WATCHES TV, READS A MAGAZINE AND ALL THE WHILE TELLING ME HE LOVES ME AND HOW WONDERFUL I AM. BUT WE ARE ONLY STARTING THIS JOURNEY. HE HAS A TRACH. HE ALREADY WON'T DRINK. HE ALREADY DOESN'T EAT. HE ALREADY DOESN'T DO WHAT HE IS SUPPOSSED TO DO TO HELP HIMSELF. I'M ALREADY TIRED OF SAYING DID YOU DRINK THE WATER OR GATORADE I GAVE YOU AN HOUR AGO 8OUNCES?!! IF HE IS LIKE THIS NOW WHAT IS HE GOING TO DO WHEN HE GOES THROUGH CHEMO MUCH LESS RADIATION. I FEEL GUILTY THINKING GOD, I DIDN'T WANT THE ROLE I HAD BEFORE THE CANCER DIAGNOSIS BUT NOW I REALLY WANT TO CHECK OUT. BUT I WON'T. IT IS SO HARD HELPING SOMEONE WHO DOESN'T WANT TO HELP THEMSELVES. WHAT CAN I DO SO I DON'T WAKE UP AND RELIVE THIS FRUSTRATION DAY AFTER DAY? OR DO I NEED TO GET A GRIP AND JUST KNOW THIS IS MY BURDEN TO BARE.THIS SUCKS. I AM A LOVING , GIVING WIFE AND MOTHER BUT RIGHT NOW I FEEL LIKE I AM A HORRIBLE PERSON, WITH HORRIBLE RESENTMENT. ALL THE WHILE HAVING TO DO FIFTH GRADE HOMEWORK, BRING KIDS TO THEIR SPORTING EVENTS, BATHE THE DOGS, OH FIT IN 12 HOUR SHIFTS AT WORK AND NOW TAKE CARE OF MY HUSBAND AND OUR CANCER ON TOP OF EVERYTHING ELSE! UNBELIEVABLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Comments

  • 3Mana
    3Mana Member Posts: 811
    #2
    You can't give up
    TBOB,
    You can't give up. I know how frustrating it can be, especially if your husband doesn't want to co-operate. But as hard as it is for us to handle this, just think what they're going through. When my husband was diagnosed with nsclc in January, it was such a shock to us. He had a back ache in August and we figured it was from all the yard work he did in summer. Then in Dec. he finally went to the doctor. Had a MRI and they said he had 2 fractures in his lower spine. Told him to get a back brace & take ibuprofen. Had to go back in Jan. and have another MRI and it had changed, so we were sent to an Onocologist cause they figured it was a tumor. We never expected the devastating news we received that day. Well, he had radiation for brain & spine, then they started chemo. Had one treatment with 3 types. He started coughing up blood 2-3 weeks after. So the next chemo they stopped Avastin which was causing the problem. Well, he passed away Mar. 25th from hemmoraging which was one of the rare side effects. We were married 46 years & he was the love of my life.
    So be patient & enjoy your husband no matter what. "Carole"
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #3
    Journey
    You are on a difficult and frustrating journey. Cancer can be scary for everyone. I am sorry that your husband is not able to communicate with you even in the good times. I'm guessing that cancer won't change that. I can tell you that the feelings you are having are fairly normal in this not normal caregiver world. Don't feel guilty about having them you have a right to your feelings. Hang there. Fay
  • TBOB
    TBOB Member Posts: 19
    #4
    3Mana said:

    You can't give up
    TBOB,
    You can't give up. I know how frustrating it can be, especially if your husband doesn't want to co-operate. But as hard as it is for us to handle this, just think what they're going through. When my husband was diagnosed with nsclc in January, it was such a shock to us. He had a back ache in August and we figured it was from all the yard work he did in summer. Then in Dec. he finally went to the doctor. Had a MRI and they said he had 2 fractures in his lower spine. Told him to get a back brace & take ibuprofen. Had to go back in Jan. and have another MRI and it had changed, so we were sent to an Onocologist cause they figured it was a tumor. We never expected the devastating news we received that day. Well, he had radiation for brain & spine, then they started chemo. Had one treatment with 3 types. He started coughing up blood 2-3 weeks after. So the next chemo they stopped Avastin which was causing the problem. Well, he passed away Mar. 25th from hemmoraging which was one of the rare side effects. We were married 46 years & he was the love of my life.
    So be patient & enjoy your husband no matter what. "Carole"

    twlight zone
    THANK YOU FOR YOUR THOUGHTS. I VERY SORRY FOR YOUR LOSS. I WILL CONTINUE TO TRY AND STAY POSITIVE EVERYDAY AND TAKE TIME TO SMELL THE ROSES.
    TBOB
  • TBOB
    TBOB Member Posts: 19
    #5
    grandmafay said:

    Journey
    You are on a difficult and frustrating journey. Cancer can be scary for everyone. I am sorry that your husband is not able to communicate with you even in the good times. I'm guessing that cancer won't change that. I can tell you that the feelings you are having are fairly normal in this not normal caregiver world. Don't feel guilty about having them you have a right to your feelings. Hang there. Fay

    TWILIGHT ZONE
    HANGING IN OUTER SPACE! THANK YOU, FAY FOR THE VALIDATION. WHEN I REREAD WHAT I WROTE THIS AM, I WAS ONCE AGAIN DISSAPPOINTED FOR MY HOWEVER BRIEF POOR ME THOUGHTS. TOMORROW'S ANOTHER DAY.. WE WILL SEE WHAT IT BRINGS.
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #6
    TBOB said:

    TWILIGHT ZONE
    HANGING IN OUTER SPACE! THANK YOU, FAY FOR THE VALIDATION. WHEN I REREAD WHAT I WROTE THIS AM, I WAS ONCE AGAIN DISSAPPOINTED FOR MY HOWEVER BRIEF POOR ME THOUGHTS. TOMORROW'S ANOTHER DAY.. WE WILL SEE WHAT IT BRINGS.

    Don't be too hard on yourself, TBOB
    An ego-centric person, which is what you have described your husband to be, doesn't necessarily change because of a cancer diagnosis.

    If he was ungrateful for your efforts before, if you were literally the glue that held your family together and the motivation for the family to move forward in life, it is unlikely that a cancer diagnosis is going to change these things.

    You are expressing what you feel and that's what this site is for. I saw no indication in what you wrote that you intended to walk away from this situation. Even if you did, that's up to you. We haven't lived what you have lived.

    Your husband sounds like many people described in other postings on this site - and it may very well be his raising or something in his background that made him this way.

    There is no reason for you to feel good about being taken for granted. Take care of yourself because when all is said and done, TBOB, you are the only one who is going to take care of you.

    Hold your head up and keep going.

    Hugs.
  • lovingwifedeb
    lovingwifedeb Member Posts: 183
    #7
    Welcome To The Biggest Hearts Club
    I say that with a smile... the more I read hear and the more I meet the more I feel at home here. You said the magic words in your whole paragraph as far as I am concerned and that is "OUR CANCER". The person diagnosed is not the only one who has the cancer is it? The person who has the cancer and the people around us certainly don't view it that way. We the caregivers feel this great amount of pressure, don't we? I know I certainly do. To be great giver? To be the perfect wife or husband? Now to be the humble caretaker? Was I ready for this role ad caretaker? I don't think so. My kids are raised and gone and in a few years we were looking forward to planning retirement. I don't think anybody who is responding to you is ready for care taking this this if they are honest.

    If communication in your marriage wasn't good before the cancer it certainly isn't going to be good after a diagnose like this is it? So you have to decide for yourself what you want out of your marriage now. Are you in the boat with him? Will you take both oars if he can't? Sometimes we, the caregivers will need help ourselves and I hope you as well as I can find it when the time comes. Support is everything. But your husband most of all does not want to feel alone and I'm thinking fear rules his heart right now.

    There should be a rule about being diagnosed with cancer in my humble opinion... a counselor should be able to live with you for as long as it takes to get through with it. It eats through lives in a matter of many levels, many expectations get broken.

    Keep posting we will be thinking about you as we all work through our own diagnoses with our loves ones. Take care of yourself and your children as they will watch you and your reactions closely.

    Deb
    lovingwife to Bob, stage 3c
  • zinniemay
    zinniemay Member Posts: 522
    #8
    lovingwifedeb said:

    Welcome To The Biggest Hearts Club
    I say that with a smile... the more I read hear and the more I meet the more I feel at home here. You said the magic words in your whole paragraph as far as I am concerned and that is "OUR CANCER". The person diagnosed is not the only one who has the cancer is it? The person who has the cancer and the people around us certainly don't view it that way. We the caregivers feel this great amount of pressure, don't we? I know I certainly do. To be great giver? To be the perfect wife or husband? Now to be the humble caretaker? Was I ready for this role ad caretaker? I don't think so. My kids are raised and gone and in a few years we were looking forward to planning retirement. I don't think anybody who is responding to you is ready for care taking this this if they are honest.

    If communication in your marriage wasn't good before the cancer it certainly isn't going to be good after a diagnose like this is it? So you have to decide for yourself what you want out of your marriage now. Are you in the boat with him? Will you take both oars if he can't? Sometimes we, the caregivers will need help ourselves and I hope you as well as I can find it when the time comes. Support is everything. But your husband most of all does not want to feel alone and I'm thinking fear rules his heart right now.

    There should be a rule about being diagnosed with cancer in my humble opinion... a counselor should be able to live with you for as long as it takes to get through with it. It eats through lives in a matter of many levels, many expectations get broken.

    Keep posting we will be thinking about you as we all work through our own diagnoses with our loves ones. Take care of yourself and your children as they will watch you and your reactions closely.

    Deb
    lovingwife to Bob, stage 3c

    So right
    Deb , you are so right, I have 37 years of marriage and we still have our "moments" But we do try to talk them out. I never though our marriage was in trouble at all. I think we know going into marriage it is a give and take. What you give and what you take is what your marriage will be. Does not matter if you work all day and come hoe mand have to do the dishes. What matters is the happiness you feel , that while you did the dishes maybe he made the bed or fixed a flat tire. The end should be that 99% of your marriage should be just happy to be together.
    I would rather do all the dishes and all the work around the house as long as I keep my husband ! He is my best friend , my lover and all thoses thing that he was when we got married. Sure there is times I would like to poke him in the head , I think that is normal . Cause there is times I am sure he has thought the same. It is what we do when we are mad that defines our marriage . TALK IT OUT who knows you might be right this time.
    I Love my husband and all his little rotten things he does! And I know he loves me!
  • TBOB
    TBOB Member Posts: 19
    #9
    lovingwifedeb said:

    Welcome To The Biggest Hearts Club
    I say that with a smile... the more I read hear and the more I meet the more I feel at home here. You said the magic words in your whole paragraph as far as I am concerned and that is "OUR CANCER". The person diagnosed is not the only one who has the cancer is it? The person who has the cancer and the people around us certainly don't view it that way. We the caregivers feel this great amount of pressure, don't we? I know I certainly do. To be great giver? To be the perfect wife or husband? Now to be the humble caretaker? Was I ready for this role ad caretaker? I don't think so. My kids are raised and gone and in a few years we were looking forward to planning retirement. I don't think anybody who is responding to you is ready for care taking this this if they are honest.

    If communication in your marriage wasn't good before the cancer it certainly isn't going to be good after a diagnose like this is it? So you have to decide for yourself what you want out of your marriage now. Are you in the boat with him? Will you take both oars if he can't? Sometimes we, the caregivers will need help ourselves and I hope you as well as I can find it when the time comes. Support is everything. But your husband most of all does not want to feel alone and I'm thinking fear rules his heart right now.

    There should be a rule about being diagnosed with cancer in my humble opinion... a counselor should be able to live with you for as long as it takes to get through with it. It eats through lives in a matter of many levels, many expectations get broken.

    Keep posting we will be thinking about you as we all work through our own diagnoses with our loves ones. Take care of yourself and your children as they will watch you and your reactions closely.

    Deb
    lovingwife to Bob, stage 3c

    FEAR IS RULING HIS HEART RIGHT NOW !!
    DEB, I THINK YOU HIT THE NAIL ON THE HEAD. I'VE NOTICED IN THE PAST FEW DAYS MY HUSBAND IS TRULY FRIGHTENED. NOW HE DOESN'T WANT TO USE EQUAL IN HIS COFFEE, AND HE MENTIONS OTHER THINGS THAT MAY HAVE CAUSED HIS CANCER. AS WE ALL KNOW MEN AND WOMAN CAN BE FROM DIFFERENT PLANETS AND WHAT HE FEARS IS NOT NECESSARILY WHAT I FEAR. COMMUNICATION IN OUR MARRIAGE BEFORE WAS FINE. HE CHOSE TO NOT WANT TO LIVE LIFE THE WAY I WANTED TO LIVE LIFE. HIS LIFE WAS WATCHING TV, GOING TO WORK AND COMING HOME.HE WAS VERY HAPPY. I ON THE OTHER HAND LIKE TO EXPERIENCE A WALK, SITTING OUTSIDE, TRAVEL BEING ACTIVE. WE AGREED TO DISAGREE. SOMETIMES HE WOULD PARTAKE SOMETIMES HE WOULDN'T. USUALLY IT WASN'T HIS IDEA TO GO TO A RESTARAUNT AT HAVE SOME SOUP OR TAKE A RIDE TO THE LAKEFRONT HE WOULD ONLY DO IT TO PLEASE ME.IT WAS ANS IS HARD TO LIVE LIFE INDEPENTLY BUT IN THE SAME HOUSE.
    BUT, SOME GOOD NEWS! ESPECIALLY ABOUT COMMUNICATION. THIS WEEK I TURNED THE TV OFF AND SAID WE HAVE TO TALK. OUR TALKS MAY NOT CHANGE ANYTHING I STILL HAVE TO ASK HIM TO REMEMBER TO SMILE AND ENJOY THE LIFE I FELT HE WASN'T ENJOYING BEFORE. JUST TELLING HIM THAT I WAKE UP EVERYDAY HAPPY, PEACEFUL AND SMILING AND THAT IS IT IS SO HARD TO MAINTAIN MY ZEST FOR LIFE NO MATTER WHAT HAND WE WERE DEALT WITH SOMEONE WHO IS STILL CONTENT TO JUST LAY THERE AND ACT AND LOOK DEAD WHILE HE IS STILL ALIVE.COMMINICATION IS THE KEY!!! I KNOW I FELT BETTER AND IM GOING TO CONTINUE TO TURN THE TV OFF AND GIVE HIM THE OPORTUNITY TO TELL ME HOW HE FEELS. WILL HE SHARE? I DON'T KNOW BUT I'M GOING TO CERTAINLY GIVE IT A TRY...MAYBE HE WILL FEEL BETTER. MAYBE NOT..
  • TBOB
    TBOB Member Posts: 19
    #10
    TBOB said:

    FEAR IS RULING HIS HEART RIGHT NOW !!
    DEB, I THINK YOU HIT THE NAIL ON THE HEAD. I'VE NOTICED IN THE PAST FEW DAYS MY HUSBAND IS TRULY FRIGHTENED. NOW HE DOESN'T WANT TO USE EQUAL IN HIS COFFEE, AND HE MENTIONS OTHER THINGS THAT MAY HAVE CAUSED HIS CANCER. AS WE ALL KNOW MEN AND WOMAN CAN BE FROM DIFFERENT PLANETS AND WHAT HE FEARS IS NOT NECESSARILY WHAT I FEAR. COMMUNICATION IN OUR MARRIAGE BEFORE WAS FINE. HE CHOSE TO NOT WANT TO LIVE LIFE THE WAY I WANTED TO LIVE LIFE. HIS LIFE WAS WATCHING TV, GOING TO WORK AND COMING HOME.HE WAS VERY HAPPY. I ON THE OTHER HAND LIKE TO EXPERIENCE A WALK, SITTING OUTSIDE, TRAVEL BEING ACTIVE. WE AGREED TO DISAGREE. SOMETIMES HE WOULD PARTAKE SOMETIMES HE WOULDN'T. USUALLY IT WASN'T HIS IDEA TO GO TO A RESTARAUNT AT HAVE SOME SOUP OR TAKE A RIDE TO THE LAKEFRONT HE WOULD ONLY DO IT TO PLEASE ME.IT WAS ANS IS HARD TO LIVE LIFE INDEPENTLY BUT IN THE SAME HOUSE.
    BUT, SOME GOOD NEWS! ESPECIALLY ABOUT COMMUNICATION. THIS WEEK I TURNED THE TV OFF AND SAID WE HAVE TO TALK. OUR TALKS MAY NOT CHANGE ANYTHING I STILL HAVE TO ASK HIM TO REMEMBER TO SMILE AND ENJOY THE LIFE I FELT HE WASN'T ENJOYING BEFORE. JUST TELLING HIM THAT I WAKE UP EVERYDAY HAPPY, PEACEFUL AND SMILING AND THAT IS IT IS SO HARD TO MAINTAIN MY ZEST FOR LIFE NO MATTER WHAT HAND WE WERE DEALT WITH SOMEONE WHO IS STILL CONTENT TO JUST LAY THERE AND ACT AND LOOK DEAD WHILE HE IS STILL ALIVE.COMMINICATION IS THE KEY!!! I KNOW I FELT BETTER AND IM GOING TO CONTINUE TO TURN THE TV OFF AND GIVE HIM THE OPORTUNITY TO TELL ME HOW HE FEELS. WILL HE SHARE? I DON'T KNOW BUT I'M GOING TO CERTAINLY GIVE IT A TRY...MAYBE HE WILL FEEL BETTER. MAYBE NOT..

    MUCH APPRECIATED SUPPORT
    NOELLES MOM, ZINNIEMAE ET AL THANKS SO MUCH FOR RESPONDING. YOU ALL HAVE REMINDED ME THAT I AM NOT ALONE!I LOVE YOU!NOW I'M GOING TO GET DRESSED AND GO TO WORK. LEAVING MY HOUSE TO WING IT WITHOUT ME. IT WAS SCARY BEFORE WE HAD CANCER AND IT IS EVEN SCARRIER NOW. BUT I'M GOING TO DO IT! I WILL NOT POST HOW THE DAY ENDS UPBECAUSE I'M SURE IT WILL BE ANOTHER DAY IN THE TWILIGHT ZONE BUT HEY I DO LIKE ADVENTURE.SOMETIMES I SHOULD BE CAREFUL WHAT I ASK FOR. I AM TRULY LIVING!
    TBOB

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