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GilWest

Distinguished member
Joined
Mar 1, 2014
Messages
359
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
WV
City
Southern
After managing my mom's ALS for 3 years, my advice is to stay strong and do not dwell. There are so many decisions that you absolutely ARE NOT going to get every one of them right. Yes, you might do something to hurt your PALS. I dozed off one evening and awoke early the next morning to realize that I had not turned my mom for numerous hours. It happens...and it will happen to you. Accept and move on. You will second guess yourself. I would have gotten my mom a better wheelchair had I realized that she was going to live 2.5 years instead of the 2 months I was told when she came home on the vent. I cant change that now, but I had to accept it and move along. It was hard to see her in the bed for that long, but that is what ALS does. It takes everything...but it does end. If you maintain and do not waiver, you will look back on everything you did with pride. I used to think that was just "fluff talk", but it is true. I am more proud of putting everything to the side for nearly 3 years and helping her than anything I have done in my life.
 
Thanks Gil. Your words of wisdom were duly noted. I know that I want to be able to look back and know I did my very best even if at times it didn't seem to be enough.
 
I needed to hear this. Thank you.
 
So good to see you here and posting such a great message Gil.

I agree with you. I often say here that at the time I was a CALS I felt like I was just bumbling along. I knew once Chris passed that I had the right reasons for all I did, and I did my best. I have no regrets. That doesn't mean I did everything perfectly.

Thanks again, you have inspired me so many times.
 
Awesome words. I feel a lot of the same, and couldn't say it any better!
 
The only advice I would add to this is:

When you can't stay strong come here and rant and be supported til and you will find your strength again.
 
Gil,
Thank You for those words, we all need them.
Hugs,
Adriana
 
Thanks for that! Today is better already for your words of wisdom.
 
I couldn't Agree More.. and it's Far From " Fluff ".. The last 2 years of My Dear Wife Liz's Journey I did nothing but go to work come home and take over from the Caregivers till the next morning and repeat. I didn't even know what day it was at times. I wouldn't change a thing as far as how much love and care I gave her to the end. Looking Back there is a certain amount of pride in what I did as many do.
 
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