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Amyotrophic Lateral Sclerosis (ALS) Message Board

Mother with ALS

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Old 06-22-2010, 12:01 PM   #1
Join Date: Jun 2010
Posts: 1
Jennifer1975 HB User
Mother with ALS

Hi there. My 59 year old mother has ALS. She has had it I would say around 5 years. She has been on oxygen since January of 2009. She started just using the bipap at night only but now is on bipap 24x7. She is confined to a wheelchair and actually it's been a week since she has been out of bed. When she gets out of bed she is on just regular oxygen but can only stay out of bed for maybe an hour tops. She still has use of her arms but her hands are not real stable. She needs help eating. Her speech is good and her swallowing is also good. Her memory has deteriorated in the last month or so. Her long term memory is okay but her short term memory is terrible. I live with my mom but my brother (who lives across the street) is pretty much her primary caretaker. We are now using Hospice (as of last week) to give him a break. She has chronic bladder infections due to the catheter. She gets disability and had to retire from her job last year.

I can't imagine how long she has. I don't know how long someone can go on using a bipap pretty much 24x7. They told us a year and a half ago that she didn't have long so I don't like to listen to the doctors. However, she has definitely declined in the last three months or so. It doesn't take a dr to say she doesn't have long but I just wish I knew if it were weeks? Or months? Six months? She needs a ventilator but has decided not to go that route (which I think is a good choice in my opinion).

Does anyone have any advice as far as the last stages of ALS?

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Old 06-29-2010, 06:58 PM   #2
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Join Date: Jun 2010
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amykelly HB User
Re: Mother with ALS

My question is the same as yours only my husband has bulbar onset and went directly from diagnosis to bipap. In 4 weeks his deterioration is just astonishing. It is my understanding that most patients will go into a coma because of the carbon dioxide that can no longer escape their lungs and will die peacefully. Other's will die from pneumonia. Most patients are afraid of choking to death but this doesn't happen. Don't know if I really believe this. My question is when you ask how much time and the dr. says we just don't know then how do you know when you become eligible for hospice?

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