• Going through a rough time lately. My father has cirrhosis which turned into liver cancer, which has spread to his lungs and adrenal glands.

    Asked by shorsegirl24 on Thursday, December 20, 2012

    Going through a rough time lately. My father has cirrhosis which turned into liver cancer, which has spread to his lungs and adrenal glands.

    He has been through a lot the past 3 months, but wants to keep fighting. As soon as he gets discharged from the hospital, he returns a day or two later for some new symptom or issue. They stabilize him, discharge him, and he goes right back in. He refuses to change his level of care. He wants everything that can be done in order to stay alive. He has no quality of life right now. The family is exhausted from running back and forth, and he won't talk to us about his fears, his thoughts on dying. We think he might even think he will get better. I am confused as to what to do, I cannot change the level of care while he is still awake and aware of what is going on. But I am neglecting my family, my job, and my health to be there for him all the time. By all accounts, a man in his condition should not still be alive. But he continues to fight. Help!!

    9 Answers from the Community

    9 answers
    • nancyjac's Avatar
      nancyjac

      I guess maybe I am seeing the situation a little differently. Is his in treatment for cancer or is he just going to the ER and being treated for symptoms? He should be under the ongoing care of an oncologist. Has his oncologist told him that his condition is terminal? I think the quality of life issue maybe more yours than his. Being a caregiver is a major undertaking. If you are unable to care for him, perhaps look into a nursing home, hospice, or home health care services.

      over 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      It is one of the hardest things you will ever do, taking care of a loved one who is fighting cancer. It's one of the most Noble jobs you will ever undertake also. I had to go through this in taking care of my Mom and Dad, both who passed away after fighting cancer. The hardest job I have ever done for sure. Like Nancy said, there are organizations that deal in this, Hospice, Nursing Homes, etc. However, you cannot be on Hospice if you are still fighting the cancer, Hospice is only for maintaining comfort until end of life.
      We wish you well on this difficult path. Let us know a few more details and others can share their experiences in this.

      Greg P
      Team WhatNext

      over 4 years ago
    • SueRae1's Avatar
      SueRae1

      Being a caregiver is one of the hardest things on earth. harder then being a patient, especially when it comes time to deal with end of life issues. My parents did not have cancer but my sibs and I needed to deal with these issues in the last 2 months of their lives. It is very draining in every sense of the word. Some days I felt so guilty because no matter what I choose to do, I knew I was short changing someone.

      My sisters and I tried to set up schedules so that we all got some needed time to ourselves. You must take care of yourself, otherwise you will be unable to take care of others.

      We are here to support you and send you virtual hugs -

      over 4 years ago
    • shorsegirl24's Avatar
      shorsegirl24

      nancyjac, my father has been under the care of a wonderful oncologist for about 3 months. he tried Nexavar, but the side effects were too severe and he eventually refused to take it. He was diagnosed as stage IV back in September, as it had already spread to his lung. It has since spread to his other lung and his adrenal glands.

      He lives in a nursing home, but they send him to the ER because of the symptoms the cancer gives him: Shortness of breath, and most recently, his sugar plummeting to 30. His advanced directives says to do everything they can to keep him alive. I'm not a primary caregiver, but I'm his POA and the the main point of contact for all of his care. he is currently in so much pain that they have started giving him morphine and Ativan. His hospital care consists of regulating his kidney function, which has been failing for several weeks, raising his sugar, which has been up and down for 2 weeks, between 20 and 278, and draining fluid, measuring urine in/output, everythng to keep him alive. Doctors have talked to him, we have talked to him, but he still wants to live. He is barely conscious the past 2-3 days. I am still working, and taking care of my own family, and still running to the hospital and talking to doctors all day and updating my family. I also had to pick up my grandma (his mother) from the nursing home to take her to visit. She is wheelchair-bound and quite a handful. Niether of us want to see him suffer. She and I have prayed for God to just take him. yet he wants to hang on. I feel awful for wanting him to be at peace, it sounds selfish. There may not really be an aswer out there, I just wanted to know if anyone else has been through this, when your dying loved one wants to keep living.

      over 4 years ago
    • shorsegirl24's Avatar
      shorsegirl24

      Also, he does not want to discuss Hospice, to him that is the end, and it means he and we are giving up. he has been adament that he does not want Hospice. So the hospital and the Home honor his wishes to save him and back and forth we go!

      over 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      That is a tough position to be in, the doctors wanted to know what my mom's attitude would be when we were talking about this before we told her what her prognosis was. The doctors don't want to force the term Hospice on anyone, and they won't if the patient doesn't agree. I feel for you, I have been there, except we lived in the nursing home with my dad 24 seven taking care of him, getting him out of bed to go to the restroom, only to make it 3 steps and messing all over. We had to feed him because he woudn't eat, we bathed him, took care of every living need until he just stopped.

      Like I said before, the hardest thing you will ever do. But at the same time, I am happy that I was able to be there for him taking care of him instead of some stranger that might not have taken care of his needs for hours maybe.

      I hope you get some help and can rest some, it's time to call in all your favors from friends, and tell the rest of the family that they are a part of it, whether they want to be or not. Everybody seems to have an excuse why they can't help at a time like this. Sorry, but sometimes you just have to be an XXXhole and tell everyone what's up.

      Best of luck to you

      over 4 years ago
    • carm's Avatar
      carm (Best Answer!)

      Shoresgirl24, my name is Carm and I am an oncology/end of life nurse. I see your dilemma and what you desire is no easy task. The end of life conversation can be the hardest conversation if not done right. My patients are all ages from children to adults and all of them diagnosed with less than 2 weeks to live when they are referred to me. It is no easy feat to get a stranger to follow you into that long good night. But, it is doable if you know what to say. I can help you with that dialogue and I will send you my personal email. If you wish to attempt it without that dialogue, the best tool is the "5 Wishes" booklet and you can get one at the aging with dignity website. It is a form of advance directive that is designed to stimulate that type of conversation. I always keep an ample supply. Sometimes it is not easy to get someone to follow you down that path. If you do not embrace the concept of death, it can be a difficult concept to sell. Knowing the right way to have that conversation goes a long way. I hope this helps you and good luck to you, Carm.

      over 4 years ago
    • shorsegirl24's Avatar
      shorsegirl24

      Thank you all and carm I look forward to reading this book and getting the dialog advice. I have no idea where to start!

      over 4 years ago
    • jvf's Avatar
      jvf

      I must say your story impressed me and I advise you to focus on finding a solution to making him feel better and understanding that he's afraid of talking about his feelings. You should be gentle with him and not ask directly why he's not talking and not sharing his thoughts. Sick people tend to act different than healthy people, keep that in mind and be understanding with him and most important, find other doctors other solutions to keep him healthy.

      about 4 years ago

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