I abosolutely hate this disease

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jim and i
jim and i Member Posts: 1,788 Member

Jim was doing so well at the Hospice fascility. Since he has been home he has been very restless, angry and agitated. He keeps wanting to die. Last night I called Hospice because I didn't know what to do with him. I finally got him to sleep at 2 am with the recommended med combo of the on call nurse, The Hospice Councelor came by today. She told me that this happens to some patientsespecially men and I probably had a few more weeks to endure this. She stated that he was in emotional as well as physical pain. He is down to about 3 cans or less Jevity per day and very weak. I am having a very hard time getting him turned and to the bedside commode. I have finally gotten him sleeping now, I pray he sleeps through the night. Yhis is not the Jim I know. He has never yelled at me or cussed at me. I know he doesn't know what he is saying and I try not to let it bother me. Oh how I wish he could find some peace. It is so hard to see him suffer.

Thanks for listening and for the prayers. I do not want to scare anyone or depress anyone. Just needed to talk.

Bless you

Debbie

Comments

  • MarineE5
    MarineE5 Member Posts: 1,032 Member
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    Debbie

    You vent all you want, pound the keys a bit harder if you need too. We are hear to listen and let you release some pent up frustration. This beast wears on the patient and the caregiver as well. You are doing the best you can by yourself.

    My Best to Both of You. Prayers sent out, hope you both have a peaceful night.

  • donfoo
    donfoo Member Posts: 1,773 Member
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    you are amazing

    Debbie,

    You show such strength through such difficult times. Since he is so uncomfortable and in pain, has it been suggested maybe he could use more meds to settle him down more. It seems like it might be better for you both if he were more restful and calm.  I am envisioning having him more tranquil would be better than how he is now. Just a thought.

  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi Debbie

     

    This is about the hardest thing to do in life, and like you said it is not the kind loving Jim you know. I know when I was so deep in pain that I said a lot of things to my wife that I so deeply regret, because it was not me. I pray that God will give you the strength you need day by day to take care of Jim. Remember His words Psalm 46 Be still and know that I am God. No matter how strong the Wind will blow or how high the Sea may be in this life. Your anchor will hold because you are anchored on the Rock of salvation. We don’t understand why in this life but someday we will, we will understand everything with Jesus by our side.

     

    I pray that God will continue to give you strength to endure the trials ahead of you.

    Tim Hondo

  • KareGiver
    KareGiver Member Posts: 301 Member
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    Hondo said:

    Hi Debbie

     

    This is about the hardest thing to do in life, and like you said it is not the kind loving Jim you know. I know when I was so deep in pain that I said a lot of things to my wife that I so deeply regret, because it was not me. I pray that God will give you the strength you need day by day to take care of Jim. Remember His words Psalm 46 Be still and know that I am God. No matter how strong the Wind will blow or how high the Sea may be in this life. Your anchor will hold because you are anchored on the Rock of salvation. We don’t understand why in this life but someday we will, we will understand everything with Jesus by our side.

     

    I pray that God will continue to give you strength to endure the trials ahead of you.

    Tim Hondo

    Sending prayers

    and peace to you and Jim.

     

    Lynda

     

  • KB56
    KB56 Member Posts: 318 Member
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    Jim

    Debbie, if it helps you to write down what you're feeling then by all means do it.  I know it must be very difficult watching Jim go through the changes that he has been dealing with and you have been a real trooper to do all that you can for him at this point in his life.    Just be there for him and do what you can and remember the Jim you've known the past 20-30 years and remember him that way.  I'm sure that's what he wants.   I remember my Dad in hospice towards the end as he was in so much pain but trying to be strong.   It was really tough on my Mom just like it is on you now.

    You two are in my thoughts every day.

    Keith

  • katenorwood
    katenorwood Member Posts: 1,912
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    Hello Debbie

    I'm so sorry things are the way they are for Jim and yourself.  The hospice team seams to be helping you understand what Jim is going through.  Do they offer any kind of respite care so that you can get some inbetween much needed breaks ?  (other than the care unit Jim was in)  We survivors don't say it enough.....you our caregivers walk a very hard and frustrating walk.  Know that Jim does need you, know that Jim loves you, know that if he could take this away from you he absolutely would.  You are amazing Debbie !   When things get too hard to handle, please, please don't try to shoulder this on your own.   Keeping you both in our prayers,

                                                                                                       Katie and Rolie 

  • wolfen
    wolfen Member Posts: 1,324 Member
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    Hello Debbie

    I'm so sorry things are the way they are for Jim and yourself.  The hospice team seams to be helping you understand what Jim is going through.  Do they offer any kind of respite care so that you can get some inbetween much needed breaks ?  (other than the care unit Jim was in)  We survivors don't say it enough.....you our caregivers walk a very hard and frustrating walk.  Know that Jim does need you, know that Jim loves you, know that if he could take this away from you he absolutely would.  You are amazing Debbie !   When things get too hard to handle, please, please don't try to shoulder this on your own.   Keeping you both in our prayers,

                                                                                                       Katie and Rolie 

    Debbie

    Please don't take to heart any negative things Jim may say to you. It is not your Jim. It is the illness, pain, & medications talking. I relate to some of what you are experiencing. During Ron's short time home between hospitals, I could not move him without help from our son. If Hospice isn't able to help, are there others nearby who might? I know it is extremely difficult to do this by yourself.

    Keeping you both in my thoughts & prayers.

    Luv,

    Wolfen

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    debbie, saying prayers for

    debbie, saying prayers for peace and calm for jim.   you are welcome to say whatever you are feeling here!  we understand.  praying for you both.

    God bless you,

    dj

  • Guzzle
    Guzzle Member Posts: 710
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    debbie, saying prayers for

    debbie, saying prayers for peace and calm for jim.   you are welcome to say whatever you are feeling here!  we understand.  praying for you both.

    God bless you,

    dj

    Thinking of you both

    Your love for Jim is amazing.

  • GavinP
    GavinP Member Posts: 118
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    Guzzle said:

    Thinking of you both

    Your love for Jim is amazing.

    Can't add much more...

    Just to say I'm very sorry your going through this and you and Jim will be in my Thoughts.

  • pattyanny
    pattyanny Member Posts: 544
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    Hi Debbie, I am sorry that

    Hi Debbie, I am sorry that you and Jim are going through this. It is so difficult for both of you, and you are entitled to vent, scream, and stamp your feet! I want you to know you are in my prayers as such a dedicated caregiver to the man you love. Sending healing prayers to take Jim's pain away, and give him strength to want to fight. May the Lord wrap Jim in His loving arms and comfort him, and give him peace.

    Love & Prayers

    Pattyanny

  • Sunshine60
    Sunshine60 Member Posts: 81
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    I hate it too!

    You and Jim  are in my daily prayers- I know this must be horrible for you. Come here often and vent as much as you need.  I hope you both get some rest soon.

  • jim and i
    jim and i Member Posts: 1,788 Member
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    Thanks everyone for the

    Thanks everyone for the encouragement and prayers. I know not why God allows us to suffer so, but God's ways are not our ways and it is all beyond our humnan understanding. I am hanging on to His everlasting arms, that is the only way I can get through this. Of course, all of my CSN family and their prayers are a big part of my strength to carry on..

    Blessings to you all,

    Debbie