Caregiver questions

Sugarbear72
Sugarbear72 Member Posts: 1
in Leukemia #1

My husband was diagnosed with ALL in August & has been through 4 rounds of chemo but still has 20% cancer left. He doesn’t talk much, spends most of his time in bed, and never goes anywhere other than Dr appts. I’ve never gone through what he is & don‘t know if this is normal chemo side effect. We have 3 children & they have had very little contact with their father because he seems irritated with all of us all the time. He never smiles or laughs at home anymore only with people who visit. I’m afraid that by the time he  has recovered from all of this (approx a year) that we will have adjusted to living life without him, and that scares me. My little ones won’t want to be around him if he continues to be mad whenever they are around. He sits in the living room while we are gone & goes to his room once we get home. What can I do as a caregive? If you have leukemia please help me understand his feelings. 

Comments

  • Megsrn7880
    Megsrn7880 Member Posts: 5
    #2
    I’m going through similar

    My Husband was diagnosed in May 2017 and we have 6 kids and before my Husband worshipped the ground I walked on. He would stop in to the unit I worked on before going to work and bring me coffee every morning. He wouldn’t go to bed without giving me a kiss and saying I love you. It was a true love story. I was told all the time how lucky I was but since the diagnoses he is angry all the time and really doesn’t do much. Even if he is able to do things he won’t and every time he does less and less it scares me because I feel like we’re taking a step backwards. I cry daily and it’s very hard to stay strong for him or my kids because I’m hardly keeping it together myself. I just want my husband back. I know this sounds selfish but our entire marriage was was always him loving me tremendously and now without that I’m lost. What makes this even worse is our sex life is gone. Even if he wanted to he is unable to perform. This is just too much when you put it all together. Not even a year ago we were living the life. Both with great jobs and beautiful family and now it’s gone. He went into remission after first round of chemo and we felt very hopeful theN found a donor for transplant but within 90 days he relapsed and it came back with a vengeance. I’m so afraid of losing him!  I think about it daily and it’s too much to bare anymore. I’m sorry I can’t offer you any words of encouragement other than that your not alone and to hang in there. 

     

    Megan 

  • Redakameth
    Redakameth Member Posts: 7
    edited October 2018 #3
    I hope that everything will

    I hope that everything will be alright

  • nehagill
    nehagill Member Posts: 24
    #4
    Thats a difficult situation

    Thats a difficult situation that you are d=facing and there is no denial but do you remember about PMS? How dull that would make us and how grumpy. Now think about Cancer and think that they have been head of the family taking care of all the needs of the family and now suddenly they are restricted to bed.Please try to understand from there point of view. They want to love you and be loved but how could they when they themselves are so low on self esteem. when they equate their illness to their failure and a loss to provide thinghs and emotions they earlier would. Its not against you honey, they themselves are fighting from so much not only inside their body but also inside theruir head. Understand them, they have lioved you and kids all throughout and now it is yiur turn to provide them endless and selfless love knowing that they wont respond to it. Dont treat them with pity, treat them as you used to earlier treat them. fight with them, love them, watch movies with them, order food from outside. Be as you were, its they who need you and not vice versa.

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #5
    nehagill said:

    Thats a difficult situation

    Thats a difficult situation that you are d=facing and there is no denial but do you remember about PMS? How dull that would make us and how grumpy. Now think about Cancer and think that they have been head of the family taking care of all the needs of the family and now suddenly they are restricted to bed.Please try to understand from there point of view. They want to love you and be loved but how could they when they themselves are so low on self esteem. when they equate their illness to their failure and a loss to provide thinghs and emotions they earlier would. Its not against you honey, they themselves are fighting from so much not only inside their body but also inside theruir head. Understand them, they have lioved you and kids all throughout and now it is yiur turn to provide them endless and selfless love knowing that they wont respond to it. Dont treat them with pity, treat them as you used to earlier treat them. fight with them, love them, watch movies with them, order food from outside. Be as you were, its they who need you and not vice versa.

    This is a good answer, and I

    This is a good answer, and I know it to be true because I just went through it with my boyfriend, who passed on May 18, Tuesday at 315 am.  He had had 2 cancers, Stage IV CLL leukemia, which wss in remission but then he was hit with Stage IV Head & Neck cancer which metastasized to multiple sites. He fought for Years, since 2012 !! No breaks in his treatments. He fought long and hard .

    Beautiful personality but his last 2 months were full of depression and anxiety . However I never wavered !! .I stayed loving and sweet and completely Giving, spoiling him as best I could.  He loved it and wss very grateful, as I was the only friend who stuck with him until the very end!!  

    Always, always tell them you love them. Encourage them to open up and to talk. 

    By the way, I myself am Stage III recurrent Head & Neck cancer ( same cancer he had) and I encouraged him to heap all his burdens and feeling upon me. I told him I could take it ... Its much too fresh and raw to go into yet, SD I lost him only last week, but suffice it to say, you yourself have to be strong.

    You do this For Them. For them, 100%.  Do it and have no regrets. Go all out for what they need!

     

    DollbabeCJ

  • GibiSamtin
    GibiSamtin Member Posts: 9
    edited July 2021 #6
    so sad to hear about it

    be strong there

  • pwkayaker
    pwkayaker Member Posts: 1 *
    #7

    This is typical of grief. They are grieving the loss of themselves and their life. Anger is a part of it

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