I wanted to share with all of you how we, as a couple decided to handle this. After going in and out of the hospital for 4 months consequently and getting nothing but “well, when you’re stronger we’ll do chemo again” from the Onco....we decided together...Enough was Enough”. John went home on hospice on 2/18 and passed away, comfortably on 2/28 with me at his side. It took a bit of time to adjust his pain meds to get him comfortable and it wasn’t easy to deal with his restlessness while we were adjusting them upward....but the hospice team was awesome during and after! It’s taken me a bit of time to write this....and wasn’t sure I wanted to, but others suggested that this topic is just as important to discuss as treatments! I sincerely wish each and every one of you faith on this journey. Make you decisions together....this affects BOTH of you as a couple! Blessings! Susan Shelby
UPDATE on “When is Enough, Enough? - Advanced Prostate...
UPDATE on “When is Enough, Enough?
I love you and i know how strong you were and how much you did for John during that difficult time, which isn't really reflected in yr story..the pain the drugs, the anxiety attacks the in and out of hospice not enough medical money you still needing to work in order to finance all this and to keep your job. John not responding to the morphine getting wild...and still moaning with pain...you hooking up cameras so u could see him from your work...and you being so tired and feeling so guilty that you “gave up”..that you didnt do that last chemo.....
I love you too! You were my strength, sounding board and friend through it all! That’s what this site can give you!!
Wow, God bless, every once in awhile I am again made aware that there is an "end stage". Makes me worry for my wife.
Thank you SO MUCH for writing this. This is, unfortunately, a part of the journey for some of us, and we who may face this in the future appreciate your generosity and courage to write. My condolences for your loss, but I'm also super-glad you made the decision together. It sounds like it was the right decision for both of you.
Much love,
Susie
Susan, I am so sad that it has come to this, but please be at peace in knowing that this is something you both want. I think that when my time has come to say “enough is enough” I’d like my wife to be by my side (she will) and let me go peacefully as y’all did. May God the Father be with you and your family, and give you comfort and peace as you grief this loss, with the knowledge that his suffering is over.
At some point you have to ask is it doing me more harm than good? It is an extremely difficult decision, but you made it together and that is what is important. Know that all our prayers are with you.
Thank you for writing that. It is important and needs to be brought up even though it is uncomfortable to do so. The When is Enough Enough conversation is rarely spoken of but it needs to be.
Thank you for having the courage and thoughtfulness to do so.
You both were fortunate to be with each other to the end. I agree with you that there are no objectively right or wrong decisions, just what is right for you.
Susan,
What an amazing warrior, your husband, he battled all the way, then the "prowess" of you both, makes me stronger, thank you so much, for sharing this...
I just got lost of words, my highest admiration,
George
Dear Susan, thank you for sharing. I pray for strength and courage to continue this life without your amazing husband. I'm sure you have a treasure of beautiful memories together. God bless you. I send you a hug and remember that you are not alone🙏💛
I'm so sorry to hear but thank you for sharing. There is definitely wisdom in not fighting a battle that can't be won. I'm only starting on my journey and am doing very well so far, but am very much aware that sooner or later, whether it's cancer or something else, I may face a similar decision.
At the risk of being weird and bringing Harry Potter into this, I find then ending of "The Tale of the Three Brothers" from "The Deathly Hallows" to be inspiring and oddly comforting:
"But though Death searched for the third brother for many years, he was never able to find him. It was only when he had attained a great age that the youngest brother finally took off the Cloak of Invisibility and gave it to his son. And then he greeted Death as an old friend, and went with him gladly, and, equals, they departed this life."
You must have really loved him a lot to let him go. Sometimes that’s the most unselfish thing you can do.
Schwah
Thanks for sharing this, Susan. Prayers for you and your husband.
In many ways this posting is MORE important than others. While the forum and its members are about fighting with all their weapons, it is vital to recognize that an end comes, acceptance happens and peace follows. So glad that you found a good Hospice and that you have also reached a point of acceptance to see the value of sharing his and your stories. Hugs.
God bless.
Rest In Peace
My husband and I talk about this . It’s an open discussion about how he doesn’t want more chemo and he doesn’t want to keep going when it futile. Do you think telling your MO your wishes helps? That QOL means more than sometimes more meds? We did fill out the Five Wishes form. Writing down one’s wishes does help. When do you suggest a DNR? We talk about that and yet we are going to dance class together tonite. It’s a difficult path
It’s a very difficult path. As a nurse, I insisted that John was DNR right away. If it’s his time then it’s his time......I didn’t want them to break every rib doing CPR (he had cancer in his ribs too), intubating him and prolonging his pain. His Onco was not happy with that decision.....but I know if it were HER husband she’d feel the same way! These are YOUR decisions to make.....our Onco didn’t even tell John that he was not improving, although all the scans and climbing PSA’s not to mention his physical being indicated that he was not......I had to be the one to tell him that these things are all indicating that it’s time to choose a different path! I believe THAT was the hardest thing I had to do......and I fell that that should have fallen on the shoulders of his Onco.....not his (nurse) wife! Stay in communication with each other......listen closely to what is being said....but more closely to what is NOT being said. Blessings to you both.
Thank you for your advice! Duly noted!
I read your story with a great deal of sympathy and compassion. |Your courage is admirable and I'm sure you did the right thing in ending this most unfortunate of journeys.
So sorry God bless you ..
So sorry and God bless you! My husband and I are in that situation right now. We also decided together that all his treatment end it has been 2 years next week we found out for sure he had this dreaded disease and quit all treatment April 23 2019 Went on Hospice May 16 about that same time decided he would quit eating so now he is starving him self to death I know he thought it would be a faster way to go but I am not so sure. We are just watching him dwindle to nothing and he is still here. Between Oxycodone, Morphine, and Fentenyl I think we have finally got the pain so it is bearable. I hope no one has to go through what we have had to endure it is beyond awful. Damn awful diease. God bless all of you!
I had the good fortune of knowing the hospice director personally....in fact, he diagnosed John! He made sure his medications made him comfortable. He’d gone home on a hydromorph pump which I could give him extra if needed, was getting oral Ativan, even some versed if needed! Of course me being a nurse made it easier..... but he was eventually made comfortable. His last words to me....”I love you more”.
”I love you more” .. sounds like he was incredible man...May god hold you at this time
I read his last word to you they made me cry. My hubby has never been one to say the words love but as of late he says it to me my sons and grandchildren we where just suppose to take it for granted he loved us but now it is good to hear it.
Thank you. I'm a newbie but we've already gone through hell. I know this is coming at some point and I hope I will have the courage to still write about our journey so some other newbie can witness. That's the only word I can think of that fits, since that's all we can do for others in the face of death.
Wishing you some calm in between the waves as you survey your new world.
Hugs! This forum will help you through all of your challenges. I mostly read, not contributing much.....guess this is my contribution! Love each other! Susan
Sorry for your loss.
Susan, please accept my condolences on the passing of your husband and thank you for writing about it because, as you say, it is important to have a conversation about how to handle the end as well as it is to talk about treatments. I am glad h was able to go peacefully and with you by his side and that he is no longer suffering, and I hope you have the support around you you need at this difficult time. Love, Mel.
I have not been on this forum for very long.,but God bless you,
You are one strong lady, hope I can do the same when the time comes for my hubbie.
My thoughts are with you and your family, so sorry for your loss.
Kim
So very sorry Jashelby. The madness is done.
For him...I still feel like I’m adrift in an ocean on a raft!
😢 So very sorry for your loss.
I know that feeling, from when wife went away 5 years ago. The house was so quiet. Her TV silent. Her phone not ringing. No one to argue with. No one to tell me why I was wrong and not to be such a cheapskate. I talked to her many times, asking her what I should do. She always came through for me. I am sure you will find a guiding light. God Bless. Monte
Dear Susan, I try to make people laugh because when they do then I'm happy. So right now I wish I could make you happy. Well one day I asked my cardiologist if he would be kind enough to furnish me with some meds that emmm would allow me to turn off my lights... He became adamant and said I need to see a shrink and etc. etc. I said never mind doc I was only kidding (which I wasn't). So as I walked out of the exam room I saw his sign on the wall that said "do not shovel snow" for heart attack reasons . So I pointed to the wall and said never mind about the meds doc I'll just shovel snow. (He charged me extra for that).
Now John is in a beautiful place, free of all his pain and his troubles, looking down at you and smiling with admiration that you were and still are in "his life". You did your best for him and we here hope that you take care of yourself and to remember us every now and then. God Bless you and keep you well.
j-o-h-n Wednesday 06/05/2019 7:05 PM DST
You have made me smile/laugh many times on this site....and I thank you for that. I had really thought I’d waited a sufficient amount of time as not to get so emotional....guess I was wrong. But I’m smart enough to realize this is a healing process and will take time. My post was never meant to discourage or depress anyone, but to give an outlet when you come to this junction in the road....which we all know is potentially in front of us.......Thanks for the laughs.....and keep dishing them out!!! Susan
May G_d bless you and bless his soul.
Thank you so much for sharing. God bless you as you cope with this difficult period.
Thank you for sharing. As mentioned before by others, your post is just as important as those about treatments, perhaps, more so. Not only is it a testament to your and your husband's courage, this will benefit others, it certainly did so for me. Wishing you strength and blessings during this difficult time.
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