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Terminal Restlessness UPDATE

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

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

CivilMatt's picture
CivilMatt
Posts: 2863
Joined: May 2012

Debbie,

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

Bless you and Jim.

Matt

wmc's picture
wmc
Posts: 295
Joined: Jan 2014

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
Posts: 464
Joined: Apr 2012

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's picture
Hondo
Posts: 5655
Joined: Apr 2009

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's picture
KB56
Posts: 241
Joined: Apr 2013

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

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

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

 

KB56's picture
KB56
Posts: 241
Joined: Apr 2013

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

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

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

debbiejeanne's picture
debbiejeanne
Posts: 2285
Joined: Jan 2010

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

hwt's picture
hwt
Posts: 1842
Joined: Jun 2012

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

God Bless you both,

Candi

txpipeliner's picture
txpipeliner
Posts: 5
Joined: Mar 2014

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

arndog64's picture
arndog64
Posts: 536
Joined: Mar 2011

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

 

tommyodavey's picture
tommyodavey
Posts: 352
Joined: Nov 2011

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

 

Tom

Jan Trinks's picture
Jan Trinks
Posts: 456
Joined: Apr 2009

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)

jim and i's picture
jim and i
Posts: 1569
Joined: May 2011

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's picture
connieprice1
Posts: 290
Joined: Oct 2010

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 

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