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caregivers – really long

Forums Caregiver Community caregivers – really long

  • Post
    Terra
    Participant

    Hi,

    Hi,

    My husband is stage IV, we are off his 1st trial because it was not working (randomized to DTIC), but are having surgery in January to remove the spot after having received a third opinion.  I am having difficulty as he is sure he is dying and we are not on very good terms right now.  He has told me that he is extremely worried and scared for his children's future without him and that I am not going to be able to provide for them in the same way.  He is scared they won't travel, play sports, learn about the world.  I know this is normal, scary, heartwrenching that he may not see them grow up, but how much do I listen to.  It is not nice and not making a nice atmosphere for our children who are 3.5 and 1.5 and whose whole lives have been cancer.  What will they think of their mother when he continues to berate my shortcomings whenever he has a chance, even through his body language, when I make amistake or don't finish something like he would want it done, he raises his eyebrows, shakes his head.  He has gone so far as to speak about giving his mother visitation rights in his will because he thinks I won't let them see her (she is not my favourite person, but even if I hated her, which I don't, I would never do that to my kids, that will be one of their most important connections to him if he should pass), and he has also discussed putting some of our assets in her name because she has business experience and he doesn't want me to run the apartments that we own into the ground.  I am not perfect, but neither is he, we both love our children and want what is best for them but I am tired of trying to "prove" to him who I am, I know this is some of the cancer talking but he has always been pretty sure of himself and tries to in his own way to "provide constructive critism" but now with facing death it is constant as he tries to get me "into shape."  He is very close with his mother (not speaking with his sister right now and on and off with his dad) and he is really turning away from me and towards her.  I have asked him to speak with someone with me or by himself, he tried with me once, but didn't like what she said, tried once alone, but didn't like the therapist (I didn't really either) and his mom has said to him that speaking with someone isn't worth it.  Worst of all, I am pregnant, I was on the pill, but now I am pregnant and they have both said I did it on purpose – he wants me to have an abortion and I didn't want to have a third child but have difficulty terminating the pregnancy and worrying how I will emotionally deal with that one day when things (hopefully) settle down.  Really, either decision will give me guilt, feeling as though the stress of another baby on him will kill him, I know it will kill whatever is left of our relationship, and terminating it will be less stressful short term but absolutely awful long-term. This can be embaressing, how can we be going through this and when will it end, I am losing my motivation.  The only thing he appreciates in me is coming to his appointments with him – that is all.  He has mentioned that he was looking forward to our kids getting a little older and us having some time to work on our relationship and try to mend fences, but soemtimes I wonder if I want to mend fences at all.  I  have maintained composure through most of this ordeal and been by his side, and I still will be, but I am less concerned with our relationship and the future of it.  Speaking to others is horrible because I don't think they understand what the cancer may have to do with it and I am having trouble separating it as well.

    Sorry this has turned into a novel – not even sure it makes sense.    

     

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  • Replies
      James from Sydney
      Participant

      Terra i am so sorry you are going through this. I as a carer went through a similar situation with my son, i know he loved me but i was the one he took out his anger on,. I am told they usually take it out on someone they are close to and they have a sense that you can handle it. It sounds so unfair but i got through it and so can you. 

      He needs to believe that he has a fighting chance still, does he come to this Board and see the many who are in remission at stage 4? Ask him to post on the Board his thoughts and let him see the support he will get. One thing is for sure we are all going to die sooner or later its our choice as to how we live each day with hope and love or anger and hate. Your Husband does love you but he is under pressure and taking out on you, hang in there, we are here if you need to talk.

      best wishes

      James

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      James from Sydney
      Participant

      Terra i am so sorry you are going through this. I as a carer went through a similar situation with my son, i know he loved me but i was the one he took out his anger on,. I am told they usually take it out on someone they are close to and they have a sense that you can handle it. It sounds so unfair but i got through it and so can you. 

      He needs to believe that he has a fighting chance still, does he come to this Board and see the many who are in remission at stage 4? Ask him to post on the Board his thoughts and let him see the support he will get. One thing is for sure we are all going to die sooner or later its our choice as to how we live each day with hope and love or anger and hate. Your Husband does love you but he is under pressure and taking out on you, hang in there, we are here if you need to talk.

      best wishes

      James

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      Rebecca and Bob
      Participant

      Terra,

       

      Your story sounds familiar. My husband was diagnosed stage III in Jan 2007, then stage IV Jan 2008. Our kids were only 1 and 3 when he was diagnosed at stage III. Our kids have known my husband longer as a cancer patient then a regular DAD! They are now almost 5 and 7 and they don't know what he has really been through. We never took them to the hospital and never talked about it all in front of them.  When he went for IL-2 and my older one would ask where daddy was I would say away traveling for work. Surgeries the same. There was no need to tell our little children until we had no hope, why stress them out.

      He would get angry as well about how unfair it is and take it out more on things then me, if he did get angry I let it roll off and vented to someone close. I always tried to put myself in his shoes.  Every once in a while I would go to a church near my work and just pray and cry and it made me feel better.

       I really wanted another child so bad but was afraid he would not be alive for them, well he is and has been disease free for a year and a half.  I don't really know what's going to happen and I'm ashamed to say I was thinking the worse at the time.

      We had serious family issues during his diagnosis, I felt like I was alone (except this board of wonderful people who get it). I was juggling two small children, work and going to hospitals and appointments. There were many times I just felt like I couldn't handle it anymore. My kids were actually a great escape from the scary stuff that was really going on.

      We still have our stressful every 2 month visits and my husband is not out of the woods, but I guess none of us know what is going to happen.

      Your in a very tough position,  just vent when you need to. We are all hear to listen because we get it.

       

      Rebecca

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      Rebecca and Bob
      Participant

      Terra,

       

      Your story sounds familiar. My husband was diagnosed stage III in Jan 2007, then stage IV Jan 2008. Our kids were only 1 and 3 when he was diagnosed at stage III. Our kids have known my husband longer as a cancer patient then a regular DAD! They are now almost 5 and 7 and they don't know what he has really been through. We never took them to the hospital and never talked about it all in front of them.  When he went for IL-2 and my older one would ask where daddy was I would say away traveling for work. Surgeries the same. There was no need to tell our little children until we had no hope, why stress them out.

      He would get angry as well about how unfair it is and take it out more on things then me, if he did get angry I let it roll off and vented to someone close. I always tried to put myself in his shoes.  Every once in a while I would go to a church near my work and just pray and cry and it made me feel better.

       I really wanted another child so bad but was afraid he would not be alive for them, well he is and has been disease free for a year and a half.  I don't really know what's going to happen and I'm ashamed to say I was thinking the worse at the time.

      We had serious family issues during his diagnosis, I felt like I was alone (except this board of wonderful people who get it). I was juggling two small children, work and going to hospitals and appointments. There were many times I just felt like I couldn't handle it anymore. My kids were actually a great escape from the scary stuff that was really going on.

      We still have our stressful every 2 month visits and my husband is not out of the woods, but I guess none of us know what is going to happen.

      Your in a very tough position,  just vent when you need to. We are all hear to listen because we get it.

       

      Rebecca

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      I am so sorry you are going through this. It must be very difficult. I don't have any experiences like this, but I really think you should get counseling for yourself because you are all alone with no one to talk to — except the wonderful people on this board, of course.  

      Counseling will help you manage the daily strain of caring for your husband and your children and the added burdens of difficult relationships with him and his mother.  You need someone to be on YOUR side and support you while you try to weather this tornado.  

      Best wishes,

      ellen

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      I am so sorry you are going through this. It must be very difficult. I don't have any experiences like this, but I really think you should get counseling for yourself because you are all alone with no one to talk to — except the wonderful people on this board, of course.  

      Counseling will help you manage the daily strain of caring for your husband and your children and the added burdens of difficult relationships with him and his mother.  You need someone to be on YOUR side and support you while you try to weather this tornado.  

      Best wishes,

      ellen

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      AlisonC
      Participant

      Hi Terra

      I'm so sorry for all that you're going through.  Any one of those things (husband with cancer, small children, pregnancy, difficult relationship with inlaws, marital issues) are stressful on their own, so to have them all simultaneously – it's amazing you can still type ! :)

      Are there any cancer centres near you (or on the phone) where he could speak to another stage IV mel guy ?  The reason I ask is that while you are right in saying this is his fear and anger talking (and I was angry and bitter myself – still am at times – so I get that), it's also a bit of a pity party at which you are the pinata and as his wife and the mother of his children, you deserve better.  There's an element of "get your act together and if you really want to start planning for life post-you, start knitting a strong foundation, not fragmenting the one you have".  Pitting you and his mother against each other is going to split what could otherwise be a network of support for your kids – emotional and financial.    I think that message – as a cancer patient myself – is hard to hear from "well" people, almost impossible to tolerate from "healthy" family  but can resonate if coming from someone in the same boat.  That's why sites like this are so valuable – cancer patients hear it from other people walking that path and carers can relate in the same way.

      When I was ill, my local phone counseling centre linked up patients with survivors at their stage and their type of cancer (so I was never speaking to a stage 1 lung cancer patient for example).  Maybe talking to another Dad who has small children and is stage IV would be help him to make better choices ?  Could you write your thoughts clearly to him in a letter ?  (my ex and I found that very helpful – took the "sting" out of face to face arguments).  Would getting some feedback from the stage IV Dads on this site printed for him make a difference ?

      Sorry not to have more to suggest.  A lame counselor is worse than useless, so sorry you've also come across that right now.  In your shoes though, I would be trying to find someone in his shoes who can lay it out straight for him.  Having been a cancer patient, it's really easy to ignore information from 'well" people but easier to hear it from other mel patients…..

      Good luck

      AlisonC

      Stage IIIB

      NED since 2001 

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      AlisonC
      Participant

      Hi Terra

      I'm so sorry for all that you're going through.  Any one of those things (husband with cancer, small children, pregnancy, difficult relationship with inlaws, marital issues) are stressful on their own, so to have them all simultaneously – it's amazing you can still type ! :)

      Are there any cancer centres near you (or on the phone) where he could speak to another stage IV mel guy ?  The reason I ask is that while you are right in saying this is his fear and anger talking (and I was angry and bitter myself – still am at times – so I get that), it's also a bit of a pity party at which you are the pinata and as his wife and the mother of his children, you deserve better.  There's an element of "get your act together and if you really want to start planning for life post-you, start knitting a strong foundation, not fragmenting the one you have".  Pitting you and his mother against each other is going to split what could otherwise be a network of support for your kids – emotional and financial.    I think that message – as a cancer patient myself – is hard to hear from "well" people, almost impossible to tolerate from "healthy" family  but can resonate if coming from someone in the same boat.  That's why sites like this are so valuable – cancer patients hear it from other people walking that path and carers can relate in the same way.

      When I was ill, my local phone counseling centre linked up patients with survivors at their stage and their type of cancer (so I was never speaking to a stage 1 lung cancer patient for example).  Maybe talking to another Dad who has small children and is stage IV would be help him to make better choices ?  Could you write your thoughts clearly to him in a letter ?  (my ex and I found that very helpful – took the "sting" out of face to face arguments).  Would getting some feedback from the stage IV Dads on this site printed for him make a difference ?

      Sorry not to have more to suggest.  A lame counselor is worse than useless, so sorry you've also come across that right now.  In your shoes though, I would be trying to find someone in his shoes who can lay it out straight for him.  Having been a cancer patient, it's really easy to ignore information from 'well" people but easier to hear it from other mel patients…..

      Good luck

      AlisonC

      Stage IIIB

      NED since 2001 

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        Terra
        Participant

        Thank-you for responding.  I really was venting and reading it back am surprised I wrote so much, it is hard to read.  I value all of your posts and suggestions – thank-you so much.  I have often thought about trying to connect him with someone else who has stage IV cancer and certainly will try.

        Thank-you again for understanding such a 'frightful' message.

        Terra

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        Terra
        Participant

        Thank-you for responding.  I really was venting and reading it back am surprised I wrote so much, it is hard to read.  I value all of your posts and suggestions – thank-you so much.  I have often thought about trying to connect him with someone else who has stage IV cancer and certainly will try.

        Thank-you again for understanding such a 'frightful' message.

        Terra

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      Julie in SoCal
      Participant

      Terra,

      Are you in Southern California?  Am I remembering right? 

      If so, there is a wonderful place called the wellness community. They have a center in Pasadena and in Santa Monica.  I went to the Pasadna one for a cancer patient support group and I dove there from OC every week.  It was worth the drive!  I know they have a caregiver group.  Might be something to look into.  Taking care of yourself is just as important as taking care of your loved one.

      http://www.thewellnesscommunity.org/

      Wishing you all the best this holiday season!

      Julie

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      Julie in SoCal
      Participant

      Terra,

      Are you in Southern California?  Am I remembering right? 

      If so, there is a wonderful place called the wellness community. They have a center in Pasadena and in Santa Monica.  I went to the Pasadna one for a cancer patient support group and I dove there from OC every week.  It was worth the drive!  I know they have a caregiver group.  Might be something to look into.  Taking care of yourself is just as important as taking care of your loved one.

      http://www.thewellnesscommunity.org/

      Wishing you all the best this holiday season!

      Julie

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