Doctor not optimistic

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  • #82980
    leighang
    Spectator

    Hospice is a wonderful addition to your team. And as someone mentioned in a previous message, it will help take the pressure off of YOU so you can spend more time being her child rather than her caregiver. I’m so thankful to our hospice team; they were amazing. I lost my mom in 23 days on June 8, 2014, and hospice was called in about 10 days before her death. They know from experience how to take care of the patient better than we do….but you are still in control.
    I felt the same way about my mom as you do. Who do I ask all the silly questions I’ve asked my entire life? Who do I call at 4:30 every day on my way home from work. It’s devastating. But I know somehow I will adjust to life without her. Enjoy all the time you have with her and consider letting hospice take over her care. You will be surprised how quickly they will become a part of your family. :)
    Prayers for you and your mom from Oklahoma

    #82979
    marions
    Moderator

    Suzy…..I believe that you made a decision in your Mom’s best interest by considering her medical condition and choosing an option most likely to benefit her and least likely to cause her harm. We are not prepared to make a decision for our parents and don’t always know what is the right thing to do, but try to think how you would want to be cared for in a situation like this. Is it likely that you would want to be made comfortable in your own home? You are not choosing to give up on your Mom, rather you are choosing to make her life richer and fuller for her. Given today’s wonderful happening, already you have accomplished much. Hospice does not hold anyone hostage, it is the disease that does.
    Hugs and love,
    Marion

    #82972
    kvolland
    Spectator

    Suzy –
    Glad that she had a good day today. And you are not the first person that feels that way and has had to make a decision like this. I have been down this road with some of my families. I will still say that hospice is not giving up but changing the fight. And she can always be discharged from hospice when she starts doing better. I have seen that happen may times before.
    She will be much happier at home either way. Good luck and keep us posted.

    Hugs,
    KrisV

    #82971
    suzyq1481
    Member

    My stepdad, aunt, and I decided to use hospice. I feel like I’m betraying my mother. I know she wouldn’t want hospice. She still wants to fight now, but she’s so sick and little things keep happening to her that make her doctor not want to do chemo. But, the point is that she still wants to fight. I want her to fight. Today she had such a great day, she was awake and alert, and telling us stories, and acting like normal. I hate that we’re doing this. I feel like we’re giving up on her, while she still wants to fight, and if she made the decision herself she wouldn’t do it. We’re not telling her we’re using hospice, we’re letting her think it’s home health care, and it’s just to be home instead of in the hospital until she’s healthy enough to start chemo again. This whole thing sucks.

    #82978
    gavin
    Moderator

    Suzy,

    Sorry to hear of this news about your mum. That was tough for you to hear I know and having had such conversations with my dads docs years ago I know how you feel right now. I am hoping that your mum can be seen by the team at Johns Hopkins as soon as possible and that they will be able to offer something else for your mum. Hospice can be of great help to you both right now and like the others have said to you it does not mean things are at the end here. Please do not give up hope and know that we are here for you.

    Hugs,

    Gavin

    #82977
    kris00j
    Spectator

    Suzy,
    I am sorry to hear about the docs prognosis. I hope Johns Hopkins has an alternative. And listen to KrisV and Lainy. hospice is not only for the sick, but to help the caregivers.

    #82976
    lisacraine
    Spectator

    Suzy
    Sending healing prayers for your Mom and family. Please don’t give up hope.
    Hugs
    Lisa

    #82975
    kvolland
    Spectator

    Suzy –
    I am so sorry that you are having to go through all this the way you are….and in such a short period of time.
    I would not discount hospice as an option. I understand that it feels like giving up but it’s not giving up but changing course. It might be a question to ask your ONC and see what his opinion is at this point.
    I will keep you both in my thoughts that things turn around.

    KrisV

    #82974
    suzyq1481
    Member

    No mention of hospice from the onc. The gp mentioned it a few weeks ago, but kind of just in passing and we were so optimistic we ignored it. I hope we can get to Johns Hopkins and they can fix her before it’s too late.

    #82973
    lainy
    Spectator

    Suzy, I am truly sorry to read this about your Mother. I wish I could wave a magic wand for you and set everything right. That is how this monster CC rolls. Did the ONC mention bringing in Hospice? I ordered them 3 months before Teddy passed and they were a God Send. Please let us know how we can help and you are NOT alone here.

    #10150
    suzyq1481
    Member

    Today my mom’s oncologist caught me outside of my mom’s room later in the day. He said he had been meaning to talk to me outside of the room, because he didn’t want to say what he needed to say in front of her. He told us that he is not optimistic about her condition, and that he knew that I understood that and could see it too. He explained previously that her liver was possibly failing because she’s not making albumin and her sodium is too low.

    We just got this diagnosis 3 weeks ago. How can this be happening? I am a royal mess. My mom is my whole support network before, is my cheeleader and my shoulder to cry on. Now I don’ t have her to talk about about this. There is no one like her that can do what she does for me. I don’t know what to do, I’m completely heartbroken. And we’re here stuck in this hospital because she’s got delerium and a high white cell count and low sodium. I just want everything to go back to how it used to be.

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