does anyone have any suggestions

pattynonews
pattynonews Member Posts: 176
edited March 2014 in Caregivers #1
I am having a hard time dealing with the sedation of Jack's medication, We are having a hard time keeping his pain uncontrol ups and down, it either not enough or it is so much he is sedated, His pain level never can get under a 5 , I feel alone when he has his days of being sedation, I know that sounds selfish, I just don't know how to over come it, And I just can't seem to focus on doing my own thing, I use to love to craft, but I just can't seem to do anything fun anymore, My life is all about making sure Jack is ok, he gets the proper calories in him and keeping up with all his appoointments, and medical equipment and when Im not doding that I just watch Tv , go on the computer or sleep. How do I learn to focus on my self and make it about me once in awhile without feeling guilt, Mu health is even going down, I sit here and try to think about life before cancer and the fun times Jack and I have, but I don;t see them. And don't get me wrong I love Jack , I just miss him, Here I go again thinking about me. With cancer like Jack's stage 4, head and neck does the pain ever get better, and will he ever feel like doing what he did before, He is tired alot and in pain, and this is a guy who played gigs every night, ( he has been a drummer for over 30 years ) even he did gigs the day he got his peg put in, and right after his feeding tube, but these last couple weeks he is exhausted, We were suppose to start a Trial study but his WBC is really elevate, so they are thinking infection could this cause his fatigue and feeling pain and I know the tumor is causing pain in his neck, does any one have any suggestions

Comments

  • MichelleP
    MichelleP Member Posts: 254
    #2
    Patty
    Reading your post I felt like I was reading about my own life right now. I am a 24/7 caretaker for my husband with stage IIIB lung cancer. It's a full time job there is no question about it. I too had hobbies and friend luncheons etc before this dreadful diagnosis came along...not anymore. And I too just sit on the computer during those quiet moments. But instead of playing games on the net, I spend all my time learning about cancer. It's sad yes, but I've come to realize that our lives have changed and it's changed forever. We can't go back no matter how much we miss it and want it back...it's changed now. My husband too takes pain medication that seems to zone him out. I hate that and I miss him desperately but I don't want to see him hurting and at least he's resting which his body really needs.

    Please don't ever feel selfish for feeling alone because it's a natural reaction to what your dealing with. Please come back here often, there's always someone here to chat with!
  • sue Siwek
    sue Siwek Member Posts: 279
    #3
    please tell his doctors
    please tell his doctors about his problem, there is no reason for him to be in pain. your loneliness i can not help you, i feel that too. i take every moment with my children, grandchildren and what friends that have not fallen away because they can not deal with the problem and make it the best time of the week for both myself and my husband.
  • Beckymarie
    Beckymarie Member Posts: 357
    #4
    Patty....Your message really
    Patty....Your message really hit home. My 56 yr old husband was diagnosed with an inoperable, Level IV glioblastoma in March. Everything has change in our lives. We had one year of being empty nesters and really enjoyed ourselves with so many new activities. After his radiation he was in such tough shape. I was so lonely and missed him so much. It took a long time (almost 12 wks.) but I finally can see him coming back. We are getting out a bit more, he is more talkative, energy level and stamina better.In lieu of the grim prognosis, I am trying to be thankful for any stretch of good time that we have. You are in my thoughts. Hang in there.

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