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Weening off of steroids to let loved one go

Tubbs
Posts: 51
Joined: Jul 2009

Talked to my wife's doctor over the phone today (he wants me to check in with him once a week). My wife has been deterioriating after some short relief due to radiation.

Since she is no longer improving, and her days are sad and miserable, her doctor told me to take her off steroids (decadron). He said the steroids are basically what's keeping her going right now and it could go on for a long time. But her quality of life just sucks, so he advised taking her off steroids cold turkey so she will sleep more and more and pass sooner then later.

It's a hard thing to digest but he's 100% correct. Keeping her alive with drugs is not fair to her.

Has anyone experienced this?

Noellesmom
Posts: 1317
Joined: Aug 2010

I have seen situations where medications are causing more harm than good and they have been withheld. It is a hard situation, Tubbs, but your wife deserves to not suffer.

I'm sorry you are where you are in this fight.

Hugs. Let us hear from you.

grandmafay's picture
grandmafay
Posts: 1627
Joined: Aug 2009

I remember when the dr. told us that Doug's last chemo was making him sicker, not helping. We knew that in our heads but it was still a kick to our hearts. You feel like you are giving up even though you know stopping treatment is the right answer. It's tough. We think we are ready, but we're not. We feel so helpless. You and your family are in my thoughts. Take care, Fay

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Our palliative care doctor told me that I was not helping David at all by giving him formula through his feeding tube. (David was unable to swallow anything, not even his saliva.) She told me that David was burning more calories than he was getting, just through the process of digestion. She told me that he would die sooner and more unpleasantly if I continued to force formula in his feeding tube. Plus I was removing the body's natural response to not eating--a sense of euphoria-- and making David's preparation for death more painful and more difficult for him. My family and I had to make the incredibly difficult decision not to force food on David (via his tube) any more.

I remember feeling that it was so wrong that I, David's mother, had to be in a position to make a choice like that. Wasn't it enough that I had to deal with David being in pain, suffering, dying in front of my eyes, and then on top of that, to be responsible to make a choice to not put formula in his feeding tube? Was there no end to the added misery and suffering we all had to go through?

I feel so bad for you, Tubbs. No one should have to make these choices. What a cruel, horrible nightmare cancer is.....

Love, blessings, and strength to you,
Cindy

jmy
Posts: 1
Joined: Nov 2011

My wife passed away couple weeks ago. I had to make the exact decision for her. She also developed shingles due to cancer and steroid. She was in a lot of pain. After stop the steroid (gradually), she went peacefully. It might be the right choice, but the grief and guilt have been so intense.

Tubbs
Posts: 51
Joined: Jul 2009

Thank you for all of your replies. We stopped steroids on Thursday and the change has been dramatic. My wife has gone downhill fast and her breathing is now very labored. I don't expect her to make it through to tomorrow. I'm actually surprised she has made it through today.

Her mom and I are holding vigil at me and my wife's home, taking turns accompanying her in the guest room where the hospital bed has been set up. My mom arranged for a very good priest to administer the Sacrament of the Sick. He did his duty then left...no lingering or forced counseling. That's so appreciated sometimes. I asked for a blessing for myself at the end and broke down. It's all very sad, but I feel my wife is close to peace, if she isn't already there.

Tubbs
Posts: 51
Joined: Jul 2009

My beautiful, special, bouyant, outgoing, precious and spectacular wife passed away tonight. She was a fighter, but the last couple of months took a toll on her. I have a sense that she was in heaven looking down on us the last hours of her 'life.' Her spirit and expression were gone.

I thought I was prepared, but when I shut the door to the house after the mortuary van took her body away, I broke down. Suddenly, everything I see in our house is about her.

May God please bless my wife, and bless me for the road I don't know I'm about to take.

I am one confused and empty 44 year old man right now. Tell me it gets better.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Dear Tubbs,

I'm so deeply sorry. I hate knowing that you are only 44 and without your special wife---too young!!!!

People that I know and trust and believe tell me that it does get better. Some of them have had great losses too, so I know they believe it. I'm nowhere near feeling any "better."

Two things that help me survive--I tell myself that David isn't suffering any more and I will see him again in Heaven (I really believe that). And I try to just get through one day, sometimes one hour, at a time. I don't think about tomorrow or next week.

I can tell by your posts that you are a wonderful, committed, faithful husband who was there for his wife. Not everyone has someone like that in their lives, who totally supports them and cares for them while they fight cancer. I hope it brings you some comfort, like it does for me, knowing that you did everything you possibly could for your wife, and that she was tenderly cared for and surrounded with love every moment of her battle.

I will be thinking of you and praying for you.

Love, blessings, peace, and strength to you, Tubbs.
Cindy

grandmafay's picture
grandmafay
Posts: 1627
Joined: Aug 2009

I am so sorry. I know that there are no words that can help, but maybe knowing you are not alone does. I lost my husband of 42 years three years ago after a six year battle. Obviously, I am older than you. I can tell you that for me it has become easier most of the time. The hurt is sill there, but it has mellowed. On those special days (birthday, Christmas, anniversaries , etc.) I often fall back in my grieving but not as often as I did at first. For the first year, i counted the months and had major funks the 20th of each month. Grieving is a process and each of us must do it in our own way and time. Right now you may find that you are in the fog of grief. I was glad when I found that phrase in a book about grief. It helped explain why I ran into the side of my garage and didn't remember backing out. I have read of others who have had accidents, too. As far as being ready, I don't think we ever really are. I had six years to prepare myself. Longer than we expected and shorter than we hoped. It's never long enough. Take care of yourself now. Fay

AngKad42
Posts: 26
Joined: Jan 2011

I am sorry for your incredible loss, Tubbs. I am also 44 and am currently watching my wonderful husband of 21 years slipping away. For my Tom, I know it won't be long now and I have been trying to imagine what my life will be like without him and I can't. I don't know what else to say, except that you are not alone. I will keep you in my prayers, Angie

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