New to CSN (should have joined months ago..)

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Hellofromtheotherside
Hellofromtheotherside Member Posts: 3
edited October 2016 in Caregivers #1

Hi everyone.

I am typing all this out as my mom sleeps. It's been a very long night, and I need support. My mom initially was diagnosed with breast CA about 5 years ago and went to into remission officially last March. Then she was re-diagnosed in June. This time came back with a vengeance, and long story short, this past august, she entered into home hospice. Her pain is so hard to control because she is allergic to morphine and fentanyl, and though it is a little better now with her in methadon, dilaudid, and dex, it kills me when she is crying out "Jesus, please help me, why aren't you helping me, Jesus, please"

She started hallucimating occasioBally last week, but last night, she was awake all night, trying to get out of her hospital bed, wanting to eat (and she actually ate, even though her appetite is usually crap!), wanting to go to the bathroom, seeing things that weren't there, picking at the air, etc. She got haldol and Ativa, and she finally fell asleep about an hour ago.

I lived in a different city working as an oncology nurse and moved back to live with my parents to help out back in June. I'm pretty young, at 23, and have very little social support, as all my close friends are where I used to live. My mom's sister helps out A TON, but she is leaving tomorrow to go back to her family. 

my immediate family has terrible family dynamics and communication skills with each other, and there is so much anger and lying surrounding a lot of this. the people involved are unwilling to put their differences aside for my mom's sake, and this makes her so upset. The social worker and nurse even got involved and it was a complete nightmare. I feel like I am stuck in the middle of everything.

 

on top of that, I also got engaged recently and I am so happy and excited for life with my future husband.... but I am experiencing so many different emotions, I don't know what to do. We picked a date to get married,  but because of circumstances, he suggested last night that maybe we should consider pushing back the wedding. 

 

I feel like my heart is constantly breaking. 

 

This was an intro/me venting, so if you made it through my post, thanks for taking the time to read this. 

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
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    Welcome

    To the place no one wants to be.

  • Hellofromtheotherside
    Hellofromtheotherside Member Posts: 3
    #3
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    Excuse all the typos

    im typing this all on my phone and honestly didn't proofread

  • cheatinlil
    cheatinlil Member Posts: 197
    edited October 2016 #4
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    I'm sorry you are here.  I

    I'm sorry you are here.  I want to encourage you but I have no words.  Cancer sucks.  I can cry with you.  You are not alone. 

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #5
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    Your post just popped in

    Other side, it sounds as though this difficult part of your mom's journey is about to end. Periods of activity often occur as time gets short. What does hospice say?

    People who are not there for your mom: those people always exist in our lives. It is just more obvious when there is a crisis.

    Is your dad with you?

    Is there clergy you can call? Please do so now.

    Your wedding date is something you will discuss when you are both ready. When is itset for now? Remember, you will need some joy after the sorrow.

    Prayers lifted for God's grace for all of you and peace for your mom.

    Let us hear from you.

  • GingerMay
    GingerMay Member Posts: 134
    #6
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    You aren't alone

    I hope you find some support here that you need.  You aren't alone.  

    My mother was very ill a few years ago and on some of the same medications you mention.  I sat by her side while she had hallucinations too.  She talked to people who weren't there and I wondered if they were angels coming to take her.  She talked about being in a subway station when she was in the hospital, and it goes on.  To see your mother double over in pain and scream is unbearable.  

    Keep us posted if you can.  You are in my thoughts.       

     

     

     

  • MyNewNormal
    MyNewNormal Member Posts: 15
    #7
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    I am sorry

    I am sorry you are going through this, esp so young. Juts know all of us understand and you are not alone.

    When you feel especially bad come here and vent. You van always vent here we do not judge.

    We all feel the same pain. Be strong.

  • Hellofromtheotherside
    Hellofromtheotherside Member Posts: 3
    edited October 2016 #8
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    Noellesmom said:

    Your post just popped in

    Other side, it sounds as though this difficult part of your mom's journey is about to end. Periods of activity often occur as time gets short. What does hospice say?

    People who are not there for your mom: those people always exist in our lives. It is just more obvious when there is a crisis.

    Is your dad with you?

    Is there clergy you can call? Please do so now.

    Your wedding date is something you will discuss when you are both ready. When is itset for now? Remember, you will need some joy after the sorrow.

    Prayers lifted for God's grace for all of you and peace for your mom.

    Let us hear from you.

    Hospice hasn't clearly

    Hospice hasn't clearly  indicated how long they think she has left. I think maybe 4 more months. Since the episode of delirium, she's been sleeping. it's been almost 9 hours now. Still sleeping. Occasional arm and leg movement, but still in a deep sleep. 

     

    Dad doesn't help with anything at all. Is only around when company is over to make it seem like he's involved. But he's not. and he tries to play it off with the social worker and nurse that he is and also has my moms best interest at heart, but I don't trust him at all. 

     

    in reference to clergy, I need to take advantage of that more frequently, God knows I need help. 

     

    The wedding is set set for October 2017, and if the prognosis is accurate, i don't see that being that much of an issue... we shall see.

     

    Thank you for your response and your prayers. They are deeply appreciated!

  • jorola
    jorola Member Posts: 243 Member
    edited October 2016 #9
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    also feel free to pop in the chatroom

    it's busiest between 8 to 1030 pm mountain time. we chat about cancer and support each other and sometimes we just chat about anything at all just to connect with others. might give you a break. Sounds like you could use it.

  • GingerMay
    GingerMay Member Posts: 134
    edited October 2016 #10
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    kathyneebe said:

    new member

    I am a new member. My husband David just started getting really tired 6 weeks ago. 2 weeks later he was found with a 12 cm tumor on his liver and cancer in his lungs and abdomen. In the last 4 weeks, David has lost 30 pounds and is in lots of pain. He goes from bed, to bathroom(where he thinks he has to go)m to taking a hot shower for his back. This he repeats almost every hour.  They have not made a diagnosis and I am so mad because he is wasting away so quickly right before my eyes. He thinks he is beyond a cure. I do not want to have him have chemo just for another painful day.  It is just me and his mother and sister (who live far away). I am in a 3200 sq ft house but live only in the bedroom.  Friends have left me. WAe are both 54. he used to be 6'4" and 265 lbs. He keeps losing weight cuz he won't eat or drink(like a protein shake) anything. I feel like I am going crazy. I have many of my own physical problems and am disabled and usually use a walker. I fall a lot. My last fall on the asphalt left me with a knee problem which I see a doctor for on Monday.  Feel all alone.  Feel scared.  We've been married 22 years but he is my best friend since age 15. I am not ready for this and it is the hardest thing I'll ever do.  Just want to have a friend to talk to, since it seems I scared everyone else away.....

    Glad you found this site

    I am a new member too and have nobody to talk to either.  I hope you find this site to give you some support.  I recently logged onto the Chatroom and found it helpful so I wanted to recommend it to you.  It's the 7th link on the left side of this page.    

    I'm sorry for what you and your husband are going through.  There's nothing easy about it.  I also understand about friends "leaving" you.  I think they feel uncomfortable and just don't want to stay in a bad place with me.  So they ask how everything is, and I just say "good" and talk about other things.    

        

  • kathyneebe
    kathyneebe Member Posts: 3
    edited October 2016 #11
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    new member

    I am a new member. My husband David just started getting really tired 6 weeks ago. 2 weeks later he was found with a 12 cm tumor on his liver and cancer in his lungs and abdomen. In the last 4 weeks, David has lost 30 pounds and is in lots of pain. He goes from bed, to bathroom(where he thinks he has to go)m to taking a hot shower for his back. This he repeats almost every hour.  They have not made a diagnosis and I am so mad because he is wasting away so quickly right before my eyes. He thinks he is beyond a cure. I do not want to have him have chemo just for another painful day.  It is just me and his mother and sister (who live far away). I am in a 3200 sq ft house but live only in the bedroom.  Friends have left me. WAe are both 54. he used to be 6'4" and 265 lbs. He keeps losing weight cuz he won't eat or drink(like a protein shake) anything. I feel like I am going crazy. I have many of my own physical problems and am disabled and usually use a walker. I fall a lot. My last fall on the asphalt left me with a knee problem which I see a doctor for on Monday.  Feel all alone.  Feel scared.  We've been married 22 years but he is my best friend since age 15. I am not ready for this and it is the hardest thing I'll ever do.  Just want to have a friend to talk to, since it seems I scared everyone else away.....

  • kathyneebe
    kathyneebe Member Posts: 3
    edited October 2016 #12
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    thank you for saying hello

    Gosh. Thank you for answering me. It is just like a Godsend that someone actually listened to me........ everything is just so surreal. I guess i am in shock.   I will check out the chatroom too, although the thing I most am looking for and need are a few GOOD friends to keep in touch with.  God bless you.

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    edited October 2016 #13
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    Prayers lifted

    I'm sorry y'all are going through this, Kathy.

    Have you asked the doctor for a prognosis? I know some people just don't want to know. 

  • kathyneebe
    kathyneebe Member Posts: 3
    edited October 2016 #14
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    prognosis

    Thanks for your prayers.  The doctors are liable so they can't even say it is cancer yet.  We get our update on Nov 10. That's a long time away considering his condition. We all know it is cancer. I am watching him deteriorate before my eyes. i want to know how long he has.  That's it. Just how long I have to spend time with him. Got out of the house for the first time this week- went to get my eyebrows done.  Does it really matter?  oh. I am a lot depressed.  I just stay in the Word of God to find solace and even that is difficult. I am sorry for all on this website; we all just doing what we can.

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    edited October 2016 #15
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    Eyebrows matter

    If they matter to you. It is important to do normal things.

    There is usually a fair amount of waiting before treatment begins and it can seem interminable.

    Keep using God's strength. He has plenty.  

     

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