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chrismaya

Active member
Joined
May 23, 2008
Messages
44
Reason
Loved one DX
Country
US
State
NJ
City
So. Plainfield
My mom is now in a Hospice after bravely and courageously and un-complaining-ly battling ALS for a few years now.

She is in there due to falls, lack of nutrition and poor swallowing. She can hardly swallow at all. She is not too interested in eating. All her liquids are thickened, and she is thirsty ALL THE TIME. Her breathing was assessed by a pulmonologist at 37%, so that made her, according to him, "Hospice ready."

She is receiving the best care imaginable and is being cleaned and treated with respect.

Here's my thought, though............She is *maintaining." She neither gets worse, nor gets better. Every day she seems the same. Even the nurse said today that she always seems to remain at the same level.

I am afraid eventually they will move her to a nursing home, and I know she might not get the good, loving, quality care that this in-house Hospice is giving her.

I guess this is a strange question, but can she go on like this for a year? Just eating a bit and drinking a bit and *surviving?*

I don't want my mother to die, but I also don't want to have to move her here and there, not because of an inconvenience to ME, but an inconvenience to HER. I'd like her to remain in the Hospice facility. I'm wondering what her likely prognosis might be and maybe some of you seasoned members here might have some words of wisdom for me.

ETA: She does NOT want a feeding tube or any life-sustaining measures. I am her health care rep and it's in her Advanced Directive.
 
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Hi Chris- what a wonderful son/daughter you are for taking such good care of your Mom. I know she is in hospice but so many folks put their relatives in a home of some sort and then go merrily along with their own lives. Your questions how how much thought and concern you put into her well being. I wish there were answers but each PAL is different so it is hard to say...
 
Thanks, Cindy! Such a baffling disease. The Hospice says if she stays status quo until Saturday, then they have to move her to "long-term" care. She is just so peaceful there, and they feed her sooooooooo carefully and patiently wait until they are sure she has swallowed. I am not sure how she will do in a group environment.
 
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