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You said, “I am working on my natural tendency to direct things and take my cues from him.” That is an awesome approach.

One of the hardest things for me as a PALS is the idea of giving up control to someone else. For me right now it’s little things. E.g. The weed situation in the garden had gotten out of hand. In my past life, I would have just gone out there and pulled them, and then gone out there at least weekly to keep it up. Well, this is low priority for my CALS. I can no longer pull weeds, so I just have to deal. I know the magnitude of these little power struggles will increase over time. I need to learn how to pick my battles and I’m sure the same is true for my CALS.

In terms of fighting to live as long as possible, this will vary from PALS to PALS. I heard one moderator put it well, that some folks will do whatever it takes to live as long as possible, even if it means becoming fully paralyzed. Others don’t want to become fully paralyzed. I’m in the latter camp, but will keep going as long as I feel I have an acceptable quality of life. I don’t consider it a fight but more of a journey. I’m sure many others are fighting.
 
I honestly believe an ALS diagnosis is harder on the family than on the pals. Most times it is easier for a pals to come to terms with the journey ahead. But with all that being said, a diagnosis does not have to mean an instant death sentence, there can still be some quality life ahead. Hopefully with a little time he can slow down and take a step back, hopefully sooner.
 
I can personally relate to your situation. I think the ALS diagnosis is similar to finding out you're getting a divorce: First there is shock, then anger, then denial and then and finally then, acceptance. It sounds like he's in one of the pre-acceptance phases. It will take time, but he will get there. Bless you!
 
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