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Justsouno

New member
Joined
Jul 26, 2013
Messages
1
Reason
Loved one DX
Diagnosis
12/2011
Country
US
State
New York
City
CORAM
My husband was diagnosed in dec 2011. At that time his symptoms were loss of use of hands, muscle twitching, some weight loss, respiratory distress, paralyzed disphragm and diffuse muscle atrophy. Now, he has lost the ability to walk, has an nif of 10 , Fvc is 1.78, has severe dyspnea and has lost 80 lbs so far. His doctor has ordered home hospice, but no one can tell me how long he has. It is so difficult watching this robust, healthy man deteriorate to this point. He has the option of going to an inpatient hospice but I don't want to be the one to suggest that. Please anyone, can you tell me how much longer this agony will go on?
 
I wish we could-- you sound like you are suffering. I am glad you found us--we care and understand...

there is no magic way to know when someone's time is up--but in my own opinion and I am no expert on death, it sounds like it is near. I have never heard of such a low FVC. Hospice can give you some insight I know. you might ask the nurse in private what is her experience. they don't like to talk about that infront of the patients, but will usually talk with the family so they have an idea of what to expect.

even if you have hospice at home, that will help you so so much. have them suggest the inpatient care if you are interested in it. they can do it and you will not be the bad guy. let him make the choice. How is his attitude? I think that has a lot to do with letting go. I just read a really good article on the signs of impending death. and when I read it I realized that I had heard many of the things that I read here in this forum at then end (caregivers talking about what was happening with their pals at the end.) I wll look for it again and post a link for you.


http://www.caring.com/articles/signs-of-death

I hope the end is soon, and you both find peace.
 
The FVC % of normal as is usually reported in ALS would not be a two-decimal place number like that. Maybe she is referring to liters of volume, also called FVC -- the actual capacity.
You do not have to suggest any particular care setting, just lay out all the options, including inpatient hospice. He might not want to consider now but might later. If he wants to die at home and you can support that, hospice can still support you.
 
Your situations sounds like my husband! NO one can tell you! You will be told over and over that this disease is different for everyone. Then, it can arrest at a stage. There are no for sure answers here except the statistics that are unclear 3 - 5 years. ALS is a monster in everyway.
 
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