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Amy Perdomo

Active member
Joined
Feb 22, 2012
Messages
43
Reason
Lost a loved one
Diagnosis
09/2011
Country
US
State
Florida
City
Miami
hi my mom has been really bad lately she is now in hospice, they come to my house regularly, but i am super afraid when i see that look of desperation in her eyes, and holds my hand tight, is this the end ? i am not sure what to excpect, can someone tell me if theres anythign they can give her for that gasping of air, she already is taking xanax 0.25, god i hate ALS....she is really bad, plus last night she had a bad choking episode, waiting for the cough assist machine, have the vest but am afraid to use it without the cough assit....any suggestions ?
Amy
 
Have the hospice people said anything about morphine for the air hunger?
 
yes they said that would be the next step....im playing it moment by moment, im so afraid there will be no turning back when given morphine...
 
i know your love passed and had same thing as my mom, my mom was diagnosed in sept 2011, now she is not able to do anything ...im so scared this is the final stage....can u share how your husband passed...did he have to be on the bipap 24/7, thats nother thing she yanks it off....she cant stand that and the rthas adjusted it 100 times....
 
Most do end up using the bipap 24/7 at some point, yes. As for the air hunger, they can give her meds to ease that feeling. Please call hospice and explain that she's having the air hunger. Feeling as though you can't breathe is one of the worst feelings in the world.
 
Morphine is not a bad thing. It doesn't have to be in huge amounts that cause respiratory suppression. Even small doses work so don't be afraid of it. It really helped my husband with that feeling of air hunger. It's not like once you use it there's no going back. Don't hold off unnecessarily. Hopefully it'll provide as much comfort for your mum as it did my husband. Thinking of you. Yasmin
 
Amy, you hang in there. try to be brave for your mom, I am sure she is scared. Dont be afraid if it is the end--just worry about keeping her comfortable. low doses of Morp can really help make her more comfortable and make your time together better.
 
I am sending prayers, strength and love. We're here when you need us. Take care.
 
If she doesn't have a bipap get her one also a nasal mask I only wear full face mask at night
 
thank you guys for all your support and love....she is doing a little better today, thank god for this forum..dont know what i would have done without you guys ! :)
 
Amy... it's difficult to use Glen to judge by. Because of his dementia he was never able to tolerate his bipap. It probably would have helped him be much more comfortable. As far as "not going back" with the morphine: I think we as a society are so trained to worry about addiction that we forget that what's important for a terminal patient is making them comfortable, not wondering if they'll be taking the medication for the rest of their life or not. Morphine isn't going to shorten her lifespan. It might sedate her some depending on dose, but as Barbie said, they will start her on very low doses, and will stop when they get to the lowest dose that works. You'll be surprised how much more comfortable it can make her, which is what hospice is all about.
 
actually they said something about her having to be 26 beats per minute in order to start her on the morphine.... ?
 
thank you soo much ....i have been giving her xanax .25 mg once a day and then another one at bed time with temazepam 30 mg...that tottaly knocks her out, but she is still yanking off the bipap and wanting to get up...and just not at ease...I HATE ALS !
 
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