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sagiordano

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Loved one DX
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02/2017
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US
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Hello,

My mom is in the end stages of ALS. We had in-home hospice for a week when we decided together to go to the in-patient facility so she could be more comfortable as the meds at home were not doing enough.

We’ve been here almost a week now and she had been more comfortable but now I am concerned about something. She progressed further and now we are on the third day where she has not woken up from sleep straight through. She is not on a vent, she only has bipap. They only give her morphine and adovan at night since she is no longer showing signs of discomfort and yet she has not been awake since Thursday. The earlier days of the week she was awake but progressively sleeping more.

She appears to be comfortable, the nurses keep saying that, but I’m concerned that somehow she is aware of everything and just unable to show any signs of it. I know she never wanted it to go this far. She had told us she was ready and then on the last day she was awake she said she was not ready. I just don’t know what to think. I don’t want her to suffer at all and I am panicking that it is somehow happening and we just have no idea.

If anyone has had an experience like this at all please let me know your thoughts.

Thank you,

Steve
 

tripete

Very helpful member
Joined
Dec 5, 2014
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Reason
PALS
Diagnosis
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Country
US
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PA
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Lancaster
i can only tell you that when i am asleep for 20 hours a day that i am not suffering. i cry when i am awake out of worry for my wife but not out of physical discomfort
 

KarenNWendyn

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Jul 29, 2017
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3,933
Reason
PALS
Diagnosis
07/2017
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OR
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If she appears to be sleeping and does not appear agitated, then she is comfortable. You’re not missing anything.

In terms of her saying she was ready and then later saying she was not ready before drifting off to sleep, it’s a little hard to interpret this given that she has been on Morphine and Ativan. With her now being asleep for 3 consecutive days, her body is clearly ready to go.

Peace and comfort are the priorities, and from your post, it sounds like you’re succeeding. It’s never easy emotionally, and I’m sorry you all have to go through this. I’m sending you positive thoughts.
 

lgelb

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12,706
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WA
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Steve,

Karen is exactly right. Her body is doing what she wants it to. Since she may well have pockets of awareness, just be with her, play her music, hold her hand, talk to her, let her know you are at peace and want her to be, too, whatever has been comforting to her.

She knows that you have stayed the course with her, now and throughout.

Best,
Laurie
 

KW1234

Distinguished member
Joined
Sep 28, 2016
Messages
269
Reason
PALS
Diagnosis
10/2016
Country
US
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Hillsboro
I sleep most of the day, but am totally out when I am. I have adventurous dreams, like skiing down mountains or swimming in lakes or eating scrumptious meals. In my dreams i don't have ALS. Honestly I prefer to be sleeping than awake. I can't go an hour without nodding off a nd I get upset when someone wakes me. Sleep is good.
 

KimT

Extremely helpful member
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Nov 18, 2014
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4,502
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08/2015
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South
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The Beach
Steve,
I hope the above posts help you at this hard time. I concur with what everyone else is saying. Prior to ALS I had a very severe auto accident. I broke three ribs and was in a lot of pain. I was anxious. Sleep was the only thing that helped. When sleeping, I had no pain and no anxiety. I believe she is at peace and her body is doing what it's supposed to be doing.
 

sagiordano

New member
Joined
Apr 22, 2018
Messages
2
Reason
Loved one DX
Diagnosis
02/2017
Country
US
State
NY
City
Setauket
I just wanted to thank you all for your responses and all of your kind words. You have all made me feel some sense of relief about this. Thank you again.
 
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