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Santa joe

Senior member
Joined
Oct 14, 2013
Messages
638
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
City
Goose Creek
I made a decision a few years ago to become the best "caregiver" I could possibly be. To provide loving care and comfort to Santa Joe. I would thank God every night for getting me thru the day and ask that he give me strength and courage for this journey. I have been brutally honest on this forum. That's my contribution.

Santa Joe is declining. His doctor came over Thursday for his monthly checkup. The following is what transpired- Joe is getting weaker, he is miserable, he has no life, all of which I responded with - I know. I think it's time to call in hospice again and YOU are going to have to make a decision to take him off the vent. Will I be killing him? No I will be setting him free from this monster called ALS. Called our pastor and he came over. He spoke to Joe and told me biblically, I would not be doing anything wrong. After crying and praying I knew in my heart that would be the best decision. Not only for him but for our family. Our sons leave here in tears when they see their dad. Joe is crying all the time now.

I told Joe what the doctor had said and asked (once again) if he were ready to go to which he shook his head no. I told him how much I loved him and I and our sons would be fine. We didn't want him to go but watching him suffer and miserable in his life was too much. The bad and sad thing is I don't think he will ever be ready to go.

Why didn't I have the guts to tell him how I felt about the vent. This nightmare would have been over. Knowing how he feels, I can't take him off the vent and this could go on for years. Please pray for me as I continue on this journey.

Debbie
 
Oh Debbie I will pray for all of you! I am so very sorry. You are a remarkable woman and I am so sad that you must both suffer so. I hope that Santa Joe may be released soon.
Love
Nikki
 
So very sorry. We are only at the beginning of this journey but this is exactly what I fear for the future. You are stronger then you know, we all are. Your in my prayers, good luck.
 
Hi, Debbie --

>Why didn't I have the guts to tell him how I felt about the vent.

Love? I think you are very brave ...

Max
 
Debbie,
With all you have said, he may simply be afraid of the dying process, have some image of violent choking -- has any clinician, preferably a nurse who would actually be there, really walked through w/ him what taking him off the vent w/ premeds would be like for him?
 
Your words are heartbreaking on many levels. Most of us will face what has become your reality. I think guilt plays a strong role in what your are going through right now...That is where human nature comes into the mix.
You have been strong through out his illness, and I am betting you will find a way to see it through.
Debbie....you are a hero to many of us......
 
>I am betting you will find a way to see it through.
Debbie....you are a hero to many of us......

Ditto that!
 
I guess this is a good spot for me to recount my wife's dying from ALS.

She simply went to sleep from a lack of oxygen. She didn't feel any pain, discomfort or even fear, because the morphine eliminates those.

It was a peaceful death, with her family surrounding her and her daughter and I holding her hands.

Many people aren't told what it's like to die peacefully, maybe it's time Joe understood.
 
Thanks everyone. I had planned on telling him the process he would go through. That they (hospice) would sedate him and it would be a peaceful death with myself and our sons holding his hand. After he said he wasn't ready, I didn't feel the need. He is so weak now he can't hold his head up. This is the most heartbreaking experience I've ever been faced with. Thank you all for being here for me!

Debbie
 
Debbie, I think we're saying "I'm not ready" may be more "I'm scared." I would still discuss the process w/ him and try to impart that this would be death on his terms and likely better for all concerned rather than waiting for fate to take a hand in less favorable circumstances. If he still rejects it, he should know what he is rejecting. It is the last choice he can make so would try to make sure it is an informed one.

We all feel for you both, and many of us will be facing similar decisions.
 
Thinking of you, Debbie. ...
 
Hi Debbie
My father-in-law was vented and living at home also. When he and my mother-in-law decided that he had had enough, we were all with him while he was first given something to relax, taken off the vent, and then given morphine until his breathing stopped. It was incredibly peaceful and freeing. Dare I even say it was rather anti-climatic considering all of the build-up and thought processes that must be gone thru beforehand. And I realize that I am talking about my fil and you r talking about your dear husband, your soul mate. I just wanted to share my experience with you. I wish you strength.

Trina
 
Oh Debbie--what a terrible mess. Think back to Joe before ALS...did he ever say I would not want to be on a vent or be kept alive? when he made the decision to be on the vent--did he already have the FTD?

I do think you and the boys and a social worker from hospice should all sit and talk with Joe about the dying process. I agree that he might be saying I am scared when he says I am not ready. I think you should do it if the boys, hospice the pastor and even his doctor think it is the right thing to do. Not letting the one you love suffer is a kindness. It would be different if his life was fulfilling or painfree. The end is coming for him--do you let it go on and have him suffer for how many more weeks or months there are, or do you want to set him free? It is not right that this decision has fallen on you--not fair at all but it has so you have to deal with it.

Debbie, I wish you peace and love--you are such a good person facing such terrible situation.
 
simply gutted for you
 
Debbie, I was grief stricken for you when I read your post last night. We had just returned from Seattle and I was exhausted, and Tim is requiring his non-invasive ventilation all the time now. I started to cry and couldn't stop for a while, but it also could have been that we had such a bad experience at the VA. I had to be strong for both Tim and his son, and was in nurse mode the whole time, but when I was alone, home and everyone in bed I read your post and just let go. Tim is totally alert and we can't seem to find anyone that can manage the transfers with his machines, either bipap or ventilator always available for him. I dread thinking about him requesting to have a tracheostomy with a ventilator. I think he is beginning to realize what that would mean.
 
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