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Bulbar ALS

We are caregivers for a bulbar als patient on ventilator, feeding tube, trach.  The ventilator is now doing all of her breathing.  She is moved from a recliner chair to her bed, and can still use a commode, but has to be held up to make the move, she can not stand on her own.  Does anyone have any ideas as to how long she might live, when she is not doing any of the breathing on her own anymore?  About a month ago she was doing approximately 50% of the breathing.  Thanks!  Sandy

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Oh yeah report me Bitch. If you are worried  about when she is going to die then you don't give a damn REPORT! REPORT! REPORT! God I hope I go fast so I don't have lame asses like you wondering when I'll go so you don't have to worry about me/  REPORT REPORT Wonder who's going to agree with me or you.  Damn life sucks and then you get stuck with someone like you when you die how awful.  Don't put your stones in your crown yet  U suck. Yeah you did something nice for once in your life and now your a hero you're a saint you want everyone to think you're great when you are sitting there wondering or wishing an old woman will die.  Damn I am glad I am agnostic. I am so glad I'm agnostic and it's people like you that make me that way.  Go ahead and try to report me.  This is an open forum.  Go for it.  Lord I wish I could report you.  No one with your attitude should be looking after someone who needs SOMEONE WHO CARE'S looking after them.  Put a feather in your cap and shut up and go to hell.

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Contact Hospice. How in the world did you get to care for this person and why do you want her to die? Contact Hospice they will help you and can answer your questions.For free because they care God I hope someone like you never looks after me if I am in that situation. When is she going to die how absurb.

Who in hell said I want her to die?? If I wanted her to die I wouldn't be helping to care for her in the first place, now would I??? I am concerned because I just found out FROM MY PASTOR WORKING WITH HOSPICE that she is no longer breathing on her own. I think before you start mouthing off you should know what you are talking about. I have been spending the last month caring for a friend/neighbor, because I wanted to help bring her home from the hospital where she wanted to be, do you even KNOW anything about ALS??? Or are you just one of those people who thinks you know everything?? I have a good mind to report you to Yedda for your insensitivity to a concerned question. Thanks for nothing

My Father was diagnoised with cancer in August.  We never asked how long he was going to live.  Never! Ever! Doctors didn't or would not or couldn't tell us.  But it didn't matter.  We not any of the 6 of us ever asked when.  He said he wanted to make it to the New Year.  I wasn't even close to my father and when he was still concious hospice helper asked me did I want to see how to change his diaper and I said no because there were 2 of them and out of respect  I didn't think my Father wanted me to be seeing his private parts then.  But when the cancer took over both me and my husband changed his diaper rolled him in his bed and di everything we could for him.  Hospice left us Christmas and New Years and when my husband and I were going up New Years day to let my sister go home we got a call from her boyfriend saying my father had died.  But I never asked when he was going to die. Hospice just kind of came in and then things took a change for the worse and then they left us.  I di what any daughter would do or any human being would do and made him as comfortable as I could.  I never asked when I didn't want to know. So shoot me

I was answered by a very rude insensitive person who totally misconstrued my question, and do not want to be submitted to any more of that type of thing.


Re-read your question again...

Eventhough it may not have been your intention, the way YOU wrote the question, did make it sound bad and insensitve.  You can't blame others for misinterpreting it. 

Maybe if you would have read over it and/or revised it accordingly...

Bulbar ALS is - a "HORRIBLE" disease. 

Usually lasts 18 months to five years ~ more or less.    It escapes living!

May God bless us all.... 

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