ALS/MND Support Group Forums

ALS/MND Support Group Forums (
-   Current Caregivers (CALS) (
-   -   del is near the end (

olly 02-19-2009 04:07 PM

del is near the end
i got a email from bruce yesterday saying del stopped breathing again and is back on a ventilator.
he sent this email tonight and its not good news.
i replied back and told him we can not do anything else for del now,just let him know we are thinking of him and care.
he has suffered so much and fought so hard,i think now he is at the end of this terrible desease.
my heart aches so much,it feels like he has already gone.
i just pray his mind is not as allert now so he is not suffering mentally.
i thought i should put this here instead of the main forum.
thankyou everyone for all your help and well wishes from myself and on behalf of del.
godbless you all.


I went to visit Del today at noon. The nurse I talked with said that Del was doing OK this morning with the thumb up and thumb down method of answering questions.

When I went into Delís room he did not look like he was doing very well. One eye was almost totally shut and the left eye he could open about Ĺ the way. I asked if he could do the thumbs up and down to communicate and Del barley moved his left hand, pretty much a twitch. His eyes looked mute, no distinguishable color and he was not able to make eye contact, pretty much a stare into space. Do not know if things are that bad or the drugs at work or what but it really concerned me. Del did have a plastic device in his mouth, I guess to keep from swallowing his tongue. His chin quivered a little.

I asked Del to blink once for yes and twice for no and he was not able to do it in such a manner that you could distinguish one blink from two blinks.

I am at a loss on how I can help Del. I just stood at the side of his bed and rubbed up and down his arm and hand and talked away for about 20 minutes.

The nurse pulled Delís records to see if she could talk with me and found my telephone number but a totally different name. It does not appear they would know who to contact in the event of an emergency. As I said before I did give them two numbers for Delís wife but it does not appear she has the power of attorney. So it is surprising that the hospital is trying to get a hold of someone that they have yet to locate. I did mention that Del has a stepson that is in the medical field in Louisiana and I will call Gulf States with his number that I have at home per their request.

Caroline, I just hate to see Del in this condition and no immediate family that knows how to help him. It is only his wife and she has such a communication block and appears she is lost much of the time.

I did tell Del that I would e-mail you and tell you how much he has appreciated your kindness and friendship.

God bless you,

Bruce L. Loll

brendapals 02-19-2009 04:15 PM

thanks so much for sharing Bruce's email with us,
del has certainly had a rough few months,
God be with us all

brooksea 02-19-2009 06:04 PM

Too sad!

I hope Del is kept comfortable and well taken care of.

Thanks Caroline...

crystalkk 02-19-2009 06:17 PM

Hopefully, he will not suffer this is no way to live.

sharonca 02-19-2009 08:21 PM

So sad. I'm grateful that he has Bruce to touch him and talk to him.

Caroline you have been an amazing friend. A true example of how friendship can span the ocean.


trying to stay positive 02-19-2009 08:40 PM

Caroline, I am so very sorry to hear this news. You are such a good friend and I know how much you care about Del.
If this is his time, then my prayer is that he goes quickly and peacefully.

sharona 02-19-2009 10:47 PM

So sad
I am just devistated. Del & I have been emailing to each other for quite sometime,I have been praying so hard for him to have good care & get better & just to know that people do care about him.My heart is just broke that he had to have a wife that has treated him so bad & all he wanted was to be cared about. I pray that God is with Del in this horrible time.Caroline please tell Bruce to tell Del if he see's him that I will always remember him & enjoy being his friend.I have to quit I can't see through the tears .God Bless everyone.

Zaphoon 02-19-2009 10:50 PM

I just have to say that Bruce is quite a fellow! He has taken time to search Del out and communicate with him even when Del cannot seemingly respond.

I feel sad for Del not to be physically surrounded by family and friends during this time of great need but thank God for the presence of Bruce.

I know that many of you on this forum have made tremendous efforts to see that Del was being cared for properly and that his needs were being seen to. I, for one have been deeply moved by all of the compassion and outreach.

What a super group of folk you are!

thelma313 02-20-2009 08:15 AM

I must echo Zaphoon's sentiments. Although I never communicated directly with Del the compassion and outreach shown by all of you here is downright inspiring to me. You are an incredible group of people. Having read some of Del's posts, I am saddened by this news and I truly hope that Del does not suffer.

rose 02-20-2009 07:40 PM

Caroline, I'm sorry to learn of this. I know this has got to be so hard for you. Even though Del has not gotten the affection he so desired from his wife, never doubt that he knows how much others have cared for him, and how much of a fight you put up for him.

All times are GMT -5. The time now is 06:46 AM.

vBulletin by Jelsoft Enterprises Limited Copyright © 2000-2019
Copyright ALS Forums 2006-2017