Terminal Restlessness UPDATE

jim and i
jim and i Member Posts: 1,788 Member
edited March 2014 in Head and Neck Cancer #1

Jim has "Terminal Restlessness" that keeps him moving, jerking, seeing people and things and restless. Anyone have experience with this.  I looked it up on line. I know I shouldn't but I never heard of this before and wanted to know. The oncologist added Haldon which helped some but he still could not be still so they shortened time between dose of pain med and Haldon. He did sleep last night but still changed positions a lot. His tongue has been hurting. Oncologist and nurse think cancer has spread to brain. All his vitals are good so nurse thinks he will live a month or more. The pain and restlessness are still not under control but the oncologist doubled both meds and nurse will check him tomorrow to see if he needs a pain patch.  One of the sites said that there were two ways to die from cancer, the natural way which is easy and the "Terminal Restless" way which is hard. I can't bear to think of him suffering for a month. I pray they can get the meds right to give him comfort and peace. 

The Psalm for yesterday in my prayer book was 46. Verse 10 has popped up in many was this past year and a half. "Be Still and know that I am God!" I am trying to be still and rely on God to provide Jim with an easy passing into his arms.

Thank you all so much for your continued thoughts and prayers.

Blessings, Debbie

TODAY, WEDNESDAY IS MUCH BETTER. CUT BACK ON THE AMOUNT OF HALDOL BY A LOT AND THE PAIN MEDS. THIS MORNING HE WOKE ME! HE DOZES A LITTLE AND TIES HIS IMAGINARY FISH HOOKS SOME BUT IS AWAKE MOST OF THE TIME. I THINK THEY OVER MEDICATED HIM. HE KEEPS SAYING HE IS TIRED BUT THAT IS PROBABLY BECAUSE HIS MUSCLES KEPT JERKING FOR TWO DAYS. I WILL TAKE THIS OVER THE LAST FEW DAYS. THANKS FOR THE PRAYERS THEY ARE WORKING.  DEBBIE

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    T&P

    Debbie,

    Thoughts and prayers to help you through this stage of life.

    Bless you and Jim.

    Matt

  • wmc
    wmc Member Posts: 1,804
    #3
    I'll pray for Jim

    I will pray for Jim that all is peacefull and pray for you as well. Be strong and try to find peace. 

    God Bless;

    Bill

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #4
    Prayers

    Debbie, thoughts and prayers continue for you both as you continue this journey.  I know that you have Jim in-home hospice, but if the pain becomes so bad that they can't control in in-home, they will place him in a hospice center.  There is only so much pain medication they can give in the home we were told.  The patch can cause various side effects too.  I know my husband can't use it because he has no body fat and he would get the dose all at once and overdose on it.

    I have never heard of "Terminal Restless" and thank you for the information as I have noticed at night my husband being restless while sleeping and have told the hospice nurse but she never says anything about it.  I also know from my uncle that they can put the patient in a hospice center to get their pain under control and then send them home.  They had to do that with my aunt.  I hate this beast that so many have to fight.

    Wishing you both peace and comfort -- Sharon

  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Hi Debbie

    Thanks for letting us know how Jim is doing I have you both in prayer that God will give you peace knowing that He is there by your side.

     

    God’s Blessing to you both in this hour of need.

    Tim Hondo

  • KB56
    KB56 Member Posts: 318 Member
    #6
    Jim restlessness

    Debbie, again, very sorry you at this point with Jim and I hope you both can find peace and comfort.

    The only experience I have with hospice and end of life care was my father 3 years ago.   He had bone cancer that had pretty much spread all over and he was in tremendous pain at the end.   The hospice team (and they were wonderful people) kept him medicated and as pain free as possible towards the end.    When the time came it was very quick.  My brother had to come in from San Diego and I was on a business trip in Denver and the hospice team said if we wanted to see our Dad then we had better get there today.   We were both able to make it to Florida in time and it was almost like Dad waited until we could all be there before he went on to the next life.  My reason for saying all of this is when it started to go downhill, it went downhill really, really fast.    My brother and I had tickets to fly to Florida the next weekend and even 1-2 days before Dad died, he was up and around, alert and we talked to him on the phone multiple times a day.

    The hospice people are great and can really get close when the end is near but in Jim's case where they think he may have a month or so, when the time comes it may go much quicker.

    I'm sorry to ramble but we all look for the right words to say, want to add comfort to the suffering of our "friends", and just want you and Jim to find the peace you deserve.   Please remember the great times with Jim and be there for him now as you have been for a very long time.

    Sincerely,

    Keith

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    debbie, praying that God will

    debbie, praying that God will bless you and Jim with peace and comfort and that he will help you thru this.  we will be here for you.

    God bless you,

    dj

  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
    KB56 said:

    Jim restlessness

    Debbie, again, very sorry you at this point with Jim and I hope you both can find peace and comfort.

    The only experience I have with hospice and end of life care was my father 3 years ago.   He had bone cancer that had pretty much spread all over and he was in tremendous pain at the end.   The hospice team (and they were wonderful people) kept him medicated and as pain free as possible towards the end.    When the time came it was very quick.  My brother had to come in from San Diego and I was on a business trip in Denver and the hospice team said if we wanted to see our Dad then we had better get there today.   We were both able to make it to Florida in time and it was almost like Dad waited until we could all be there before he went on to the next life.  My reason for saying all of this is when it started to go downhill, it went downhill really, really fast.    My brother and I had tickets to fly to Florida the next weekend and even 1-2 days before Dad died, he was up and around, alert and we talked to him on the phone multiple times a day.

    The hospice people are great and can really get close when the end is near but in Jim's case where they think he may have a month or so, when the time comes it may go much quicker.

    I'm sorry to ramble but we all look for the right words to say, want to add comfort to the suffering of our "friends", and just want you and Jim to find the peace you deserve.   Please remember the great times with Jim and be there for him now as you have been for a very long time.

    Sincerely,

    Keith

    Thanks Keith. His pain is

    Thanks Keith. His pain is pretty much controlled today but the Haldrol his making him sleep very deeply. I miss talking to him but I would rather he not suffer. We are in Florida. Where did your dad live?

    Debbie

     

  • hwt
    hwt Member Posts: 2,328 Member
    #9
    debbiejeanne said:

    debbie, praying that God will

    debbie, praying that God will bless you and Jim with peace and comfort and that he will help you thru this.  we will be here for you.

    God bless you,

    dj

    Debbie

    Praying that Jim can rest peacefully until the Lord is ready for him. 

    God Bless you both,

    Candi

  • txpipeliner
    txpipeliner Member Posts: 33
    #10
    hwt said:

    Debbie

    Praying that Jim can rest peacefully until the Lord is ready for him. 

    God Bless you both,

    Candi

    debbie you are very strong woman, god will be there by your side and jim's.

  • arndog64
    arndog64 Member Posts: 537
    #11
    txpipeliner said:

    debbie you are very strong woman, god will be there by your side and jim's.

    so sorry

    Debbie it's nice to hear he is getting some rest. How are you doing?????? I am praying for you and your family..

     

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #12
    arndog64 said:

    so sorry

    Debbie it's nice to hear he is getting some rest. How are you doing?????? I am praying for you and your family..

     

    So Very Sorry

    You are both in my prayers and thoughts.  May God be kind to you both as he makes the transition.

     

    Tom

  • Jan Trinks
    Jan Trinks Member Posts: 477
    #13
    Prayers

    Debbie:

     

    I'm so sorry to hear about the Terminal Restlessness but glad yesterday was better.  You are so strong and as I've said many times before this is the hardest thing to go thru!  I had not heard of two ways of dying from cancer.  I've heard of the restlessness in several people who died from cancer.  After reading your post I thought, "Charlie did go the natural way - the easy way" and now I believe the good Lord intervened as much for me as for him what with being the basketcase I was; oh I did what I had to do but inside was a wreck!  I pray for peace and calm for Jim at this stage and strength for you and your children.  God Bless and thanks for sharing with us, you know we are all here for you and Jim.

     

    Jan (Basketcase)

  • KB56
    KB56 Member Posts: 318 Member
    #14
    jim and i said:

    Thanks Keith. His pain is

    Thanks Keith. His pain is pretty much controlled today but the Haldrol his making him sleep very deeply. I miss talking to him but I would rather he not suffer. We are in Florida. Where did your dad live?

    Debbie

     

    'Florida

    Debbie, my mom and dad lived in Lakeland, Florida.   Going down there to visit mom in May.

     

    Thoughts and prayers with you and Jim,

    Keith

  • jim and i
    jim and i Member Posts: 1,788 Member
    #15
    Jan Trinks said:

    Prayers

    Debbie:

     

    I'm so sorry to hear about the Terminal Restlessness but glad yesterday was better.  You are so strong and as I've said many times before this is the hardest thing to go thru!  I had not heard of two ways of dying from cancer.  I've heard of the restlessness in several people who died from cancer.  After reading your post I thought, "Charlie did go the natural way - the easy way" and now I believe the good Lord intervened as much for me as for him what with being the basketcase I was; oh I did what I had to do but inside was a wreck!  I pray for peace and calm for Jim at this stage and strength for you and your children.  God Bless and thanks for sharing with us, you know we are all here for you and Jim.

     

    Jan (Basketcase)

    Tghanks everyone for the

    Tghanks everyone for the prayers and support. I could not be as strong during this ordeal if it wasnt for this group of loving and supportive people (you). Please note I am so thankful.

    Jim sat on the sofa with me last night and watched TV for a little over an hour. He has slept most of today and been pretty peaceful. This morning he was a little upset because he thought his cousin's children died in a horrible car wreck. I had to call his daughter and pretend it was his aunt to assure him they were ok. It is so hard to see him like this. But at least he is sleeping peacefully.

    God Bless you all

    Debbie

     

  • connieprice1
    connieprice1 Member Posts: 300 Member
    #16
    With God their is Comfort

    Debbie,    My name is Homer Price, I used to read your posts all the time when my wife was very sick and doing her treatments. Jim has gone through so much over the past few years, most men would have crumbled under the pressure of all the treatment, side effects and just the day to day symptoms of this disease. I only come on the website once every six months now that Connie is doing much better. I didn't even know Jim was terminal. He has been so fortunate to have a caregiver who loves him so much. I want you to know that I will say a prayer for both of you and hopefully God will let Jim pass in peace. I know Jim is a fighter and so are you. It breaks my heart to hear such bad news, It's just not fair to go through so much and still have to leave this world. You are a remarkable person and no one fought harder for Jim than you.

                                                                              With Love, Homer & Connie Price 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #17
    KB56 said:

    'Florida

    Debbie, my mom and dad lived in Lakeland, Florida.   Going down there to visit mom in May.

     

    Thoughts and prayers with you and Jim,

    Keith

    Lakeland...

    Shoot me a PM, or let me know if you wanna grab a Starbucks or something once here....

    I live in Lakeland..., working for Lakeland Electric actually...

    John

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