End of medication, beginning of journey to the end.

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Since Christmas my Mum has taken a dramatic downhill turn. We had a lovely christmas together, i think we all knew it would be our last and so just made the most of it. After christmas i went away for a few days and when i came back i noticed such a dramatic change. Mum is now sleeping most of the day, she can barely make it to bathroom and even then she needs help as she is unsteady on her feet. Today Mum went to the hospital to have herceptin, she was supposed to be going again on monday to see the specialist, however her specialist came and talked to her while she was there today and said that the chemo (capcitabin) and the herceptin have stopped working (she has a visable tumour growing in her stomach) and that there is no need to continue them. She also said that the other chemo that they were going to put her on to would be no good now. The specialist has suggested we get in contact with the hospice (which we already are) and that we begin a plan of managing her pain and making this last time with her as comfortable and enjoyable as possible.

 I knew this day would come eventually but i never imagined it would be today. How to you prepare yourself for the unknown? i wish someone could give us an exact time, but then would that make it any easier really? I just feel like curling up in a ball and never coming out. I really don't know how to cope, everytime i think about it my eyes well up but i feel like i must remain strong for Mum. This is just so scary.

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  • flash
    flash Member Posts: 1,685
    edited January 2011

    Hugs to you.  It's never easy.  I live in a cancer family so I experience it both ways as member and as caretaker.  Having lived through my MIL with cnacer in her stomach and intestine, can I suggest that you make sure pain medication is reallllllllly set up well.  Our problem was weekends and of course that was when crisis occurred. 

    It is scary for you but also it is scary for her.  You really want to use any support system you have for emotional and physical support.  Don't hesitate to ask people to help you.  It will make a difference in how well you can help her.  If you let yourself be drained, you will have problems helping her at the very end. Don't hesitate to seek professional and/or chemical help to deal with your own emotional needs.

     Make sure NOW that you mother has everything set up legally and also emotionally.  Don't wait until it's closer tothe end.  My MIL regretted that she had set up wills etc but hadn't taken the time to specifically speak with every friend or family member.  It was helpful that she had thought about and made clear her wishes for every contingency that she could think of.  Knowing what your mother wants will make it less stressful when you reach the  doctor asking "do we put just water in the IV or do we do glucose?" type of questions.

    Talk with your mom as much as possible about all the good times and tape record it so you can remembe the positive when things are going negatively.  Make sure you know her favorite music so you cna play it softly when she's no longer as mentally active.  Hugs to you.  You will get through it. 

  • K8ie
    K8ie Member Posts: 2
    edited January 2011

    Dear Katherine,

    I came across your post this evening.  My dearest friend has just received her diagnosis & I am devasted for her...

    It is somewhat awkward to write this to someone I don't know & will, in all liklihood, never meet.  But I lost my mother more than a decade ago & not to cancer, but to Alzheimer's.  Like many diseases, it was a long, tortuous battle whose outcome was inevitable.  But I want to share with you what I did.

    While my Mom was at the Hospice & unconscious, I sat by her bed & held her hand.  I thought of all memories that hand held.  All the Band Aids she put on my cut knees, all the Christmas presents she wrapped. She taught me to sew & knit with those hands.  She wrote me beautiful letters when I was away at college & so home sick I thought I would die.  I could go on & on...but I'm sure you know exactly what I am saying.  I felt her hand in mine, I studied it. I memorized how it felt.  

    Today, more than a decade later, whenever I need her (& you will always need her) I hold my own hand.  I hold the hand that held her hand & she is right there with me.  All the memories come back, everything comes back.  She hasn't moved an inch.  She's right there.  And your Mum will always be with you.  You are a part of her, & she, a part of you.  

    I do hope you can find peace in this time of hurt and deep grief.  

  • sandiessoldier4
    sandiessoldier4 Member Posts: 27
    edited January 2011

    Dear Katherinelynn,

    I read your post and had to respond. I just lost my mom the day after Christmas and what you describe is almost identical to what I just went through or should I say my mom went through. Although I have to say, at Thanksgiving, I did not know it would be her last. However, my dad had a feeling but didn't say anything because he didn't want us to lose hope. Right after Thanksgiving my dad, who is a doctor, felt a mass in her abdomen and could also feel her liver. She went for a scan and the cancer had basically exploded in her.....it was everywhere. I couldn't believe it then and I can't believe it now. Everyday I say to myself that I can't believe she's gone.

    Everyone's experience is different but the only way to manage it is one hour at a time. For right now I would say to you spend as much time by her bedside as you possibly can and talk to her even when she is sleeping. Lean on friends and family for support because I can honestly say without them I would not have truly lost it. I really am happy to give you my number if you would like to talk sometime because I can say that it helped me to talk to people who had been through it so let me know.

    Hang in there. There are no magical words or advice that will take your pain away. Cancer sucks!

    Courtney 

  • ddoyle
    ddoyle Member Posts: 40
    edited March 2011

    Dear Katherine,

     I am so sorry for what you are going through and what you are about to go through.  I have been where you are and where you will be going.  I lost my mom to breast cancer in 2009 and I was the only family member.  Like someone said previously the best thing you can do for her is be by her side and make sure you help manage the pain.  I made sure I was the one giving my mom her meds and when the time came for her to go to the hospital with hospice I was the one talking to the nurses making sure that they give my mom the pain meds when they were suppose to so as long as you are by her side holding her, loving her it will be okay.  The hardest thing I have ever done in my life was letting her go when the time came, I held her, I cried with her and then I released her into God's hands where she would no longer feel the pain of this horrible thing that has taken over her body.  I will pray for you and your family, and know you are not alone no matter how much it might feel that way you are not alone.  Hold your mom, love her, kiss her cherish the moments you have with her because that is what will help pull you through this.

    Denise

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