So helpless

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Labinma

Active member
Joined
Sep 14, 2016
Messages
73
Reason
CALS
Diagnosis
06/2014
Country
Us
State
Ma
I ve written here so many times with little questions along the way. My PALS is literally a walking skeleton but getting up and going to work everyday. He wont communicate a thing. He really looked wiped today. I don't know what to say, what to do, or how to help. This is the craziest, saddest situation I have ever found myself. He wants zero assistance and I think is only taking Nuplrexa (sp) as far as I can see. Only thing he said the other day to me, "so what's your plan". Uh? I had a plan a year ago to downsize to a ranch, retro fit a mini van and get into a smaller mortgage that I could afford the day he cant work. He was offended by this then and I was in the dog house for even bringing it up. I get zero direction from him and finally on high dose of anti depressants just to deal with the lack of control and inability to help this person. I am a planner, take charge, meet head on type. This has practically killed me. I am finally in a live day to day and appreciate what you have, and then he says, what is your plan? Really? Much like his body is restricting him, my mind is restricted, confused and frozen. Than you for the venting forum. This is a mean disease for all affected.
 

Manhattanite

Distinguished member
Joined
May 10, 2015
Messages
209
Reason
Lost a loved one
Diagnosis
05/2015
Country
US
State
NY
Sometimes ALS comes down like an axe between a couple. I totally get your frustration. I also struggle with my PALS having retreated back into his shell.
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,516
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
North Carolina
When he asks about your plan, can you share with him how he has made planning impossible for you? I can only try to imagine the horror our pals face, but sometimes they need to be reminded that they need to support our efforts.
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,546
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
Oklahoma
So sorry this is so hard Labinma. HUGS!
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
528
Reason
PALS
Diagnosis
05/2014
Country
CA
State
Ontario
For what it is worth, since I was diagnosed my wife has become more and more in charge with my blessing and I think it is best for both of us.
Al
 
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