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Bobby888

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Hi Everyone,

Haven’t posted in about a year. My father was diagnosed approx 18 months ago with ALS and he is in the final stages. He has trouble holding up his head, can barely walk on his own, not eating anymore on his own and getting all his nutrients from a feeding tube.

Just this week his speaking has changed and he is having a lot of difficulty expressing himself and getting the words out. He has been hospitalized for the last 2 weeks due to a pneumonia that has now been treated and has gone.

My question is his lungs are clear now of pneumonia but he is still much worse than he was 2 weeks ago and is completely on his bipap machine and can only take it off for a few seconds to answer a question and then puts it right back on. He hasn’t slept in over a week getting 2 hours maximum per day!!

How long can he survive if he is on complete bed rest, breathing with his bipap all day, eating through his feeding tube 1200ml approx per day.. There is not much quality of life and he seems to be struggling every second for air and it’s very difficult to watch. As much as I want him to be around as long as possible I don’t want him to suffer and I’m not sure how long someone with ALS can live like this.

Does this sound like it’s close to the end? Days or weeks or possibly months?
 
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lgelb

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My thoughts are:

He should be encouraged to keep his mask on and talk/communicate however he best can, if the mask provides comfort.

Are you saying he's only sleeping 2h a day? If so, the answer to your question would be, soon. Otherwise, my best guess would be up to a year, depending on nutrition and his own preference, if his BiPAP can do more for him.

Air hunger can usually be avoided till close to the end.

If he is struggling for air after the pneumonia, it is likely his settings can be improved. I will PM you.

Best,
Laurie
 

Bobby888

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Loved one DX
Country
CA
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Hi thanks for the quick reply. Yes lately he has only been sleeping 2 hours a night. The doctor thinks it might be because of the ventalin or because of his anxiety. They have given him sleeping aids a few days ago and that hasn’t worked much. He is in positive spirits and still tries to be indépendant but can’t do the things he did 2 weeks ago. He came to visit us 2 weeks ago and since then he has progressed quite quickly. Can you explain to me what air hunger is? Can he live up to a year on permanent oxygen from his bipap machine?

He was brought to the hospital we believe because of his food going down the wrong way and having phlegm stuck in his chest. He developed pneumonia which is now clear. He no longer eats food but is given all his energy by feeding tube which he is ok with.
 

GregK

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Joined
Jan 29, 2013
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You might ask the doctor, or preferably a Pulmonologist, if his BiPAP settings are still appropriate.

Has he considered a trachesytomy?
 

Bobby888

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Ontario
Sorry made a mistake doctor said he might not be sleeping because of the cortisone not Ventalin.
 

Bobby888

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Country
CA
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He is nervous about a Tranchesytomy and is not sure he is strong enough to go through it! He also had a fluttering heart and was apparently told it wasn’t a good idea for him.
 

lgelb

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Why is he getting a steroid? Yes, those can affect sleep.

And yes, he can live a year (and some do more) on BiPAP all the time, if that is what he wants. Getting the settings right (I sent you my email) is key to being as comfortable as possible to enable him to do/experience as much as possible for however long he wishes to go on.

But sleep is critical for everyone, and ALS is a taxing disease.
 

Kristina1

Senior member
Joined
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Messages
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PALS
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03/2017
Country
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MA
Does he have a communication device? That way at least he could communicate while bipap mask is on.
 

lgelb

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Most PALS can use a nasal mask, which makes speaking easier if that's still possible. Hygiene and comfort benefit as well.
 
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