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barneyswife

Distinguished member
Joined
Jan 10, 2014
Messages
224
Reason
CALS
Diagnosis
08/2013
Country
CA
State
b.c.
City
magna bay
Yesterday started out as the day from HELL!
Bipap, mucus secretion machine and cough assist machines were all arriving, and my Barney was in a major dither. Throwing things, pushing at me and trying to write something down, just could not figure what he was trying to tell me. It took me a good half hour to figure it out. He was scared and of course his performance was scaring me!
Friends and family arrived to learn all of the ins and outs of this new equipment and it worked out well, amazingly simple.
My fear was that after he would not use it and display it along with the lite writer for show and tell. (This still may be the case) Our nephew set him up on the chesterfield and I whispered in his ear that this would turn him back into the lover he used to be. Bingo, those were the words he needed to hear. Within 10 minutes he was fast asleep. Last night I set him up in bed he put on his mask, I turned on the machine and he slept with it for approximately 4 hours! Crossing my fingers for today?
Totally made a batch of lemonade!
Hugs All
Linda
 
Linda-you're my kind of girl. Whenever I can make something positive out of a bad situation is a good day for me. With all we face on a daily basis it feels pretty darn good. It takes more energy to cry than to smile so I try to smile as often as I can. I really could cure this disease if the cure were tears. Chin up.
 
Linda, that is a great example of how to help a PALS.

I'm realising the last few days myself, that I underestimate how much fear my husband is experiencing because he doesn't express it explicitly. But the behaviours you described are certainly ones I could have written and described myself.

I reckon, if we take one day at a time, then any day we have a win like that, celebrate it and enjoy it to the max! Doesn't matter if tomorrow is different, in fact that's more reason to celebrate any win at the time, you might not get the chance to if you wait and it doesn't last long LOL Sense of humour does help me thinks ;)
 
I agree Debbie and Tillie,
I had been really concerned in regards to Barneys activities. He is doing 15 push-ups at night and shoveling snow off of some of the buildings. I asked the specialist to explain to him that he was using up valuable energy and enabling ALS to do IT'S thing. She looked at me and calmly said, "Is he happy doing it?" I looked at her ( as my brain was doing some major spin outs) and said to myself, "she is right it is making him happy!
Hugs to you both
Linda
 
Same here Linda. My husband did many things that sped progression, but he enjoyed doing them.

I will never forget the impact on me the day he looked at me and said - whenever I reach a point where I can't do something, I know I will NEVER do that thing again in my life.

So he sped progression up at times, but he doesn't want to just lay down and rot.

I still don't agree with how he managed some of this, but I support him in however he wants to do it. In the end, to me, do I want to disagree and argue with him for the last however long of his life, or do I just want to support him and accept whatever comes? I choose to support and accept, it helps me deal with it, and often makes a little lemonade here too.
 
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