The hard questions

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Dotsmom
Dotsmom Member Posts: 11
edited March 2014 in Caregivers #1
With out going into too much detail my husband was diagnosed with squamous cell carcinoma, which ultimately lead to the removal of most of his jaw & all of his teeth. Jaw was replaced by bone from his leg. Six weeks post surgery additional tumor found on opposite side and it had invaded the jaw. Having gone through surgeries,chemo/radiation & rehab. finally got oncologist to give us some sort of prognosis. He probably has 6-12 months. They're going to try more aggressive chemo in 3 weeks, but are not excpecting a cure just a slow down. My question is this when do I bring up the hard questions: when does he want to stop, does he want to go into hospice(though with PEG not sure if possible), funeral, burial etc. Any thoughts?

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  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
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    the hard questions
    You don't say when you got the prognosis, Dotsmom. This kind of information takes a while to get through to all parts of our brain. Although my husband is not where yours is, we have had these discussion pretty much throughout our 32 years together as we watched other loved ones go through the process of dying. Perhaps you have done the same and it just isn't coming to you right now.

    I think one has to give the patient a little time and see if they will broach the subject; as the decline begins, if it hasn't been discussed, you must initiate the talk. You might find it help to have your minister with you, if you attend church.

    I'm sorry you are where you are in your fight. I know it has been tough. Believe it or not, you will both find some peace in getting these questions out in the open and finding resolution. And you don't want to have to face these questions in the last couple of weeks when stress will be very high.

    Just take your time and remember to exhale: you and your husband will find the right time to make these decisions.
  • zinniemay
    zinniemay Member Posts: 522
    #3
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    Noellesmom said:

    the hard questions
    You don't say when you got the prognosis, Dotsmom. This kind of information takes a while to get through to all parts of our brain. Although my husband is not where yours is, we have had these discussion pretty much throughout our 32 years together as we watched other loved ones go through the process of dying. Perhaps you have done the same and it just isn't coming to you right now.

    I think one has to give the patient a little time and see if they will broach the subject; as the decline begins, if it hasn't been discussed, you must initiate the talk. You might find it help to have your minister with you, if you attend church.

    I'm sorry you are where you are in your fight. I know it has been tough. Believe it or not, you will both find some peace in getting these questions out in the open and finding resolution. And you don't want to have to face these questions in the last couple of weeks when stress will be very high.

    Just take your time and remember to exhale: you and your husband will find the right time to make these decisions.

    Take time
    My husband was giving 6 months ,t4n1mo mets to both lungs. Then they said a year with out treatment and two with treatment. So we ever know, some of the question in the back of your mind should stay there for a while. Some should be asked.
    I worry about asking the right questions to my husband. But I know that in my heart I want only the best for him. So that will do, slowly we will move to the harder questions if we need to.
    Now in the mean time they started Chemo after the second round the tumors had gotten smaller by 30-40% and one is completly gone.
    Maybe I am just fooling myself but I think we have a chance and I want to run with it. We are trying to stay positive , and I can tell you that is not easy.
  • kimmygarland
    kimmygarland Member Posts: 312
    #4
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    zinniemay said:

    Take time
    My husband was giving 6 months ,t4n1mo mets to both lungs. Then they said a year with out treatment and two with treatment. So we ever know, some of the question in the back of your mind should stay there for a while. Some should be asked.
    I worry about asking the right questions to my husband. But I know that in my heart I want only the best for him. So that will do, slowly we will move to the harder questions if we need to.
    Now in the mean time they started Chemo after the second round the tumors had gotten smaller by 30-40% and one is completly gone.
    Maybe I am just fooling myself but I think we have a chance and I want to run with it. We are trying to stay positive , and I can tell you that is not easy.

    This is all so hard
    Whether and when to ask the questions is so hard, and I think different for every person. My husband is not in the position yours is, but he does NOT want to talk about anything like that, never has, and doubt if he ever will. Meanwhile, I want to talk about it all in detail. Somehow we work through it! ((Hugs)) to you, and I hope you and your husband have lots of good days.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #5
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    I am sorry about the prognosis. As you probably know, my husband passed away last year after a six year battle with cancer. I don't have any words of wisdom, just some thoughts from my experiences. My husband and I already had a trust, advanced directives, and power of attorneys. Because we had already began the discussions about end of life decisions, we already had some of the answers. When I did think I needed other answers, I usually started the discussion by confessing how difficult it was for me to bring it up. I would encourage you to talk with hospice. They might be able to suggest to you ways to start these discussions. They help families through this all the time. As for asking when he wants to stop, I just let my husband know from the beginning that that would be his decision, that he could stop whenever he wanted to do so. We never made any formal arrangements with the mortuary because that wasn't something my husband wanted to do. I knew he wanted to be cremated and he told our pastor that he wanted gospel music and story telling at his memorial service. The rest was really fairly easy to take care of after his death.

    I know this is a very difficult time. Sadly, it will probably get harder. Right now, try to appreciate the time you have. Take each day one day at a time or even each minute one minute at a time. Tell your husband you love him often. Try to make memories with family and friends. Celebrate the little things. Best wishes and take care, Fay

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