My husband is refusing any tubes

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Dana Razo

Active member
Joined
Mar 4, 2009
Messages
47
Reason
Loved one DX
Diagnosis
02/2009
Country
US
State
CA
City
Freedom
Ralph was diagnosed with bulbar Feb. 09 and is rapidly declining. He is now telling us that he does not want any support whatsoever! He told the doctors on tuesday absolutely no tubes. No feeding tubes or vent. I am devestated! HELP:-:)-(
 
I sincerely hope he comes to his senses!

My heart goes out to you. Let me know if there is something I can do.
 
I do too! I really am at a loss as to what to do. I called our minister and he came over today to talk and pray with him!?!
 
Dana, does your husband understand exactly what the feeding tube consists of? My Dad had the same attitude as your husband but once he dropped down to 140 pounds and I explained exactly what the PEG would be like, he came around. My father had this image of a feeding tube as a big hose going down his throat that would have him bed-bound. Perhaps it would help change his mind if you had him read some of the first-hand feedback about the PEG from PALS who have one. Just a thought...
 
Would it help for him to talk to me? As one who has a PEG and a trache and vent and still has a fantastic life I would love to share that with you guys. Life does not have to be over.
 
He is very emphatic about his decision. He worries about having to care for him and what it will do to me.
I tried to get him on the forum but he shows no interest!
 
I admit my first thought, and second was that I would accept no tubes. Then I did research, got on the forums and realized how shortsighted that was. Education is the answer - unfortunately he doesn't seem to be interested in that either. Hopefully he will have time to get used to the idea that he can live with ALS. Have you signed up with ALSA and MDA? Both good resources. Sharonca
 
Yes we signed up with MD and ALSA. I hope he does come to his senses before its too late.
 
My husband was DX in March 08'. He too refuses the feeding tube or any other kind of 'added' support. I have had a rough time accepting his decision(s). I've gone to our minister, he tells me to pray for acceptance. The last time that I talked to my husband about a feeding tube he asked me to never bring it up again. (This was my 3rd attempt at reasoning).
So I pray and help him in any way that I can.

Sis
 
My wife feels the same way about the tube. She is getting very weak, Idon't know if it is because of the PBP or the lack of nourishment. All we can do is pray.

God Bless- Xavier
 
With such a rapid decline as you said he has, I can see that he hasn't had time to take it all in and study other patients experiences. I'd say he has the say-so if you can't convince him otherwise. From what you've said, he just wants this over and doesn't want to be a burden on others. Your only hope is to convince him he wouldn't be a burden and to have him talk to Joel, Beth, and others who think it is worth it all.

In any case, we surely pray for you and hope for you that this will all work out for the best, and that you'll all have the strength to endure this terrible experience with peace and sanity. It's so hard.
 
Very sorry Dana. It is so hard to deal with everything when nothing seems to be in our control at all...
 
My Mom refused any tubes also, at the beginning, I had a very very hard time with it, but near the nd I understood.. Mom kept saying.. why would she want to live longer with this disease.. Mom faught right to the end.. but did it without the tubes.. I think we need to listen more to the one's who have this horrible disease..:oops:
 
Sis
Sounds like we are in the same situation, your right all we can do is pray!
I am overwhelmed with all of this. I feel so helpless now that i have bulging disc's and im in extreme pain. I can hardly take care of myself!
I cant be there for him as much right now and it depresses me. I feel like I'm loosing control.


We are going to have to be true prayer warriors!
God Bless
Dana
 
Marjorie,
Thank you for your words of wisdom. It has been a very short time since his diagnosed and we are still trying to make since of all this. I have told him many times he is not a burden to anyone, especially me and yes its difficult but we have to keep going on and fight this terrible disease.
So far i havent been able to talk him into checking out the site but i am hopeful that one day he will.

Blessings,
Dana
 
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