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.