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pizza
pizza Member Posts: 1
edited March 2014 in Caregivers #1
I feel totally alone. I read all of these message boards and all i can think it what about me. I am a caregiver, my husband just finished treatment and I just need a break. I feel like the world has revolved around him for so long. All I can think is that I need to get away. I have terrible guilt about this. I have done so much and been so supportive, now that he is improving I feel like I'm the one who needs a little attention. Cancer is a two way street. Especially when you tell your spouse to get something checked for two years and he is too macho to get help until it is too late. Who is the real victim here? I did nothing to deserve this. I understand that he did not either but he could have caught it earlier. Now our whole family is turned upside down because of his stuborness. I have taken care of him, the house, our kids, the bills, he has no clue the things that went on behind the scenes. Still he complains all day about not feeling well, but he is always looking for sex. Hmmm. How sick can he really feel. Anyway, I ramble, I feel like at the very least I am owed a thank you, but his head is still so far up his **** all he can see is his own needs.

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  • webozo
    webozo Member Posts: 82 Member
    #2
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    yes
    we are out here and you are feeling a normall reaction to the stress that you are under. no one quite understands what is it that you are going through because no one will go through it exactly the same way but we all have feelings that no one cares what has happened to us in all of this. i have burried a mom , a mom-in-law and now my youngest daughter has hodgkins disease. i have had it up to the top of my head at times and you want to talk about thankless job but i go on and so must you when you feel like this' tell yourself you are good and you are a giver and for god sakes go to a day spa or what ever it is you like to do for yourself thank yourself and from me to you thank for caring for him and taking such good care of him
  • Barbara53
    Barbara53 Member Posts: 652
    #3
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    talking to walls
    Can I vent, too? I've decided my worst moments as a caregiver come when I realize that nobody listens to what I say, so it's like talking to a wall. Sometimes it's my patient, sometimes family, and except for some nurses, nobody in the medical web seems to have ears. Whatever happened to the value of symptoms, how the person feels, what kind of suffering is going down? Whatever the labs or scan or whatever indicates counts for everything, so patients don't even get touched by their doctors half the time (muchless examined or conversed with for more than three minutes). Whether we're speaking for ourselves or the people we are caring for, what we have to say often counts for nothing.

    There must not be an attractive billing category for "discussing patient's situation" or "advising caregiver" within our wuuunderful health care system.
  • wifeforlife
    wifeforlife Member Posts: 189
    #4
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    oh...we're out here!
    you are most definatly not alone. It is difficult to talk about these things because this is an open forum and we are caregivers...I have found thru my husband that he doesnt' see past his pain or problems... I truely believe he has no idea the stress I'm under or the ammount of things I take care of.
    It's funny someone says "go to the spa" yea right...like I need to add another thing to my list!
    I hope it makes you feel somewhat better to knwo there are others in the same boat...rowing the same waters.
    Take care,
    wfl
  • appleyellowgreen
    appleyellowgreen Member Posts: 38 Member
    #5
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    Losing feeling
    Pizza -

    I really feel for you because you are feeling what we all seem to go through. The only thing I can add to the wisdom of the other caregivers here is that feeling angry, resentful, alone, anxious, afraid, neglected, disrespected, unforgiven, thankless, lost, etc., etc., etc., is better than feeling nothing at all. It's hard to accept the fact that these guys (cause I only have experience with guys) don't see past not just their pain, but their needs. And their needs keep growing. I am finding that the list gets longer and longer regarding things I'm doing that irritate my husband and that set him off totally. I understand that he is angry too, but I want some good feelings along with the lousy feelings. It took a while before I got a thank you. Now, they don't stop coming. I guess I'm lucky for that. I hope you have happier moments to look back on to carry you through this period. The world has revolved around him. He's a man. Sex...he's a man. Without the desire, he'd have to admit something was wrong. My husband is finally at the point where the chemo has knocked the desire out of him. Now I'm waiting for the chemo to be over and the lust crazed man to return. You did nothing to deserve this. He is a very lucky man. Use your supportive senses on yourself. There is always some way to escape for a short while - even if it's only to leave the house for a cup of coffee. I'm at the point where I run downstairs and pick the coffee up at a coffee shop (I'm in NYC) and hide in the living room while he sleeps. It's lousy. One suggestion - start a journal and ramble on girl. It helps.
  • bingles
    bingles Member Posts: 120 Member
    #6
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    appleyellowgreen said:

    Losing feeling
    Pizza -

    I really feel for you because you are feeling what we all seem to go through. The only thing I can add to the wisdom of the other caregivers here is that feeling angry, resentful, alone, anxious, afraid, neglected, disrespected, unforgiven, thankless, lost, etc., etc., etc., is better than feeling nothing at all. It's hard to accept the fact that these guys (cause I only have experience with guys) don't see past not just their pain, but their needs. And their needs keep growing. I am finding that the list gets longer and longer regarding things I'm doing that irritate my husband and that set him off totally. I understand that he is angry too, but I want some good feelings along with the lousy feelings. It took a while before I got a thank you. Now, they don't stop coming. I guess I'm lucky for that. I hope you have happier moments to look back on to carry you through this period. The world has revolved around him. He's a man. Sex...he's a man. Without the desire, he'd have to admit something was wrong. My husband is finally at the point where the chemo has knocked the desire out of him. Now I'm waiting for the chemo to be over and the lust crazed man to return. You did nothing to deserve this. He is a very lucky man. Use your supportive senses on yourself. There is always some way to escape for a short while - even if it's only to leave the house for a cup of coffee. I'm at the point where I run downstairs and pick the coffee up at a coffee shop (I'm in NYC) and hide in the living room while he sleeps. It's lousy. One suggestion - start a journal and ramble on girl. It helps.

    Yeah your right cancer is a
    Yeah your right cancer is a two way street....but its the deck we have all been dealt....guess I am in a minority....I have always been..according to my friends...the pampered princess...and loved every minute of it....now the tables have turned and it all sits on my head....I am lucky too that he is not a complainer...never was...
    I sort of feel now that its my turn to put him first and myself second...but we are early on in the game...few weeks since diagnosis...but he suffered for two months before that while trying to convince himself and I that "it was nothing"....
    It is odd though too cause every now and again the "dirty old man" in him emerges....guess the mind is willing but the flesh is weak...but they just never let loose of that male macho sex thing...too weird.
    I try to make myself some short blocks of "me time" it helps....and I have been keeping a journal to rant in...but for now his comfort and needs are my focus..
    I try to keep the negativity on the down low because I know that this is for sure not the road he really ever hoped to follow....
    Keep looking for a brighter day.
    Pat
  • david54
    david54 Member Posts: 164 Member
    #7
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    I hear you!
    Wow! What courage for you to be honest like this. I feel the same way. I have been a “Caregiver” for my wife since November 5th 2007 when she was diagnosed with Stage 4 colon cancer. I clearly remember telling her to have a physical when she turned fifty. She was healthy and ran marathons and she told me to mind my own business (not as bluntly but that was the message). This is what hurts, that it needn’t have spread this far. However, ruminating over this gets me nowhere. I swear I feel like an idiot when she complains to me how she feels and have me massage her edematous legs and look at her distended belly, but when someone calls her she perks up and acts as if she is cured! What the ??@#!@!!$! Then they buy into it and wonder what the hell I have been talking about. Do they want me to show them her latest lab work and CEA????

    I know, I know, denial is an effective defense mechanism for her survival but holy shht!!! As far as sex is concerned, not lately. As in not since November 5th 2007. Just call me a ready to explode male specimen of overdosed testosterone that would make Balco envious. Time for a five mile run!

    I love my wife. I love her more than anything I have loved before. She is dear to me and I will take care of her, always. But sometimes I need to let this crap out!

    Hang in there “Pizza.” Our culture idolizes athletes, actors, you name it. I honor you and those taking care of their spouses in this hell. Thank you for your courage to vent and share what few can understand. I know what this is like for you, as much as anyone can.

    David
  • Barbara53
    Barbara53 Member Posts: 652
    #8
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    david54 said:

    I hear you!
    Wow! What courage for you to be honest like this. I feel the same way. I have been a “Caregiver” for my wife since November 5th 2007 when she was diagnosed with Stage 4 colon cancer. I clearly remember telling her to have a physical when she turned fifty. She was healthy and ran marathons and she told me to mind my own business (not as bluntly but that was the message). This is what hurts, that it needn’t have spread this far. However, ruminating over this gets me nowhere. I swear I feel like an idiot when she complains to me how she feels and have me massage her edematous legs and look at her distended belly, but when someone calls her she perks up and acts as if she is cured! What the ??@#!@!!$! Then they buy into it and wonder what the hell I have been talking about. Do they want me to show them her latest lab work and CEA????

    I know, I know, denial is an effective defense mechanism for her survival but holy shht!!! As far as sex is concerned, not lately. As in not since November 5th 2007. Just call me a ready to explode male specimen of overdosed testosterone that would make Balco envious. Time for a five mile run!

    I love my wife. I love her more than anything I have loved before. She is dear to me and I will take care of her, always. But sometimes I need to let this crap out!

    Hang in there “Pizza.” Our culture idolizes athletes, actors, you name it. I honor you and those taking care of their spouses in this hell. Thank you for your courage to vent and share what few can understand. I know what this is like for you, as much as anyone can.

    David

    The phone scene
    David, I'm still laughing about the phone scenes. I KNOW! It's like, where did this vivacious lively person come from who's smiling and yuking it up? The one who was miserable a half hour ago before the pain pill hit? Sometimes it rolls off, but other times it drives me nuts.

    I know you love your wife. Have you read The Good Husband by Gail Godwin? Most library systems have it. It's a very sensitive portrayal of a couple who become faced with cancer, with a devoted and intelligent husband as caregiver. Literary fiction from the mid-1990's I believe.

    Vent often. You make me laugh.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #9
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    david54 said:

    I hear you!
    Wow! What courage for you to be honest like this. I feel the same way. I have been a “Caregiver” for my wife since November 5th 2007 when she was diagnosed with Stage 4 colon cancer. I clearly remember telling her to have a physical when she turned fifty. She was healthy and ran marathons and she told me to mind my own business (not as bluntly but that was the message). This is what hurts, that it needn’t have spread this far. However, ruminating over this gets me nowhere. I swear I feel like an idiot when she complains to me how she feels and have me massage her edematous legs and look at her distended belly, but when someone calls her she perks up and acts as if she is cured! What the ??@#!@!!$! Then they buy into it and wonder what the hell I have been talking about. Do they want me to show them her latest lab work and CEA????

    I know, I know, denial is an effective defense mechanism for her survival but holy shht!!! As far as sex is concerned, not lately. As in not since November 5th 2007. Just call me a ready to explode male specimen of overdosed testosterone that would make Balco envious. Time for a five mile run!

    I love my wife. I love her more than anything I have loved before. She is dear to me and I will take care of her, always. But sometimes I need to let this crap out!

    Hang in there “Pizza.” Our culture idolizes athletes, actors, you name it. I honor you and those taking care of their spouses in this hell. Thank you for your courage to vent and share what few can understand. I know what this is like for you, as much as anyone can.

    David

    Oh David,
    Thank you so much
    Oh David,
    Thank you so much for venting! I love it! Only other caregivers can relate. I was a caregiver for my dad. My mom was his main caregiver. Boy, could she relate to you! You have made my day.I have laughed and smiled! I will be copying this page to show my mom. Thanks for the info on that book Barbara. Do they have a wonderful wife edition?

    It is great how we can take this mind boggleing disease and turn it around to be funny at times. God bless all of us caregivers and patients. And pizza....best of luck to you. You are doing a great job, and one day your husband will find his head, and tell you thank you!

    I had my dad start a journal. He loved it. It actually became a family journal. This is where he communicated all of his feelings to us. This is where he told my mom how much he loved her and apprecitated her and all that she does for him. Might be a good idea for you guys.
    Tina
  • david54
    david54 Member Posts: 164 Member
    #10
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    Tina Blondek said:

    Oh David,
    Thank you so much
    Oh David,
    Thank you so much for venting! I love it! Only other caregivers can relate. I was a caregiver for my dad. My mom was his main caregiver. Boy, could she relate to you! You have made my day.I have laughed and smiled! I will be copying this page to show my mom. Thanks for the info on that book Barbara. Do they have a wonderful wife edition?

    It is great how we can take this mind boggleing disease and turn it around to be funny at times. God bless all of us caregivers and patients. And pizza....best of luck to you. You are doing a great job, and one day your husband will find his head, and tell you thank you!

    I had my dad start a journal. He loved it. It actually became a family journal. This is where he communicated all of his feelings to us. This is where he told my mom how much he loved her and apprecitated her and all that she does for him. Might be a good idea for you guys.
    Tina

    You are all welcome
    And thank you for tolerating my rant! Humor I am finding, works wonders.

    PS I ran 10 miles this morning! (LOL)
  • wifeforlife
    wifeforlife Member Posts: 189
    #11
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    david54 said:

    You are all welcome
    And thank you for tolerating my rant! Humor I am finding, works wonders.

    PS I ran 10 miles this morning! (LOL)

    too old to run!hehehe
    I'm way to old to run ten miles.... but did take up excersise..it's helps. Sometimes I think....can he complain about one more thing?...I don't think so! hehehe

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