Things I have learned today. It really doesn't matter how sick you get because you still have to take care of them. There is no break, no time out, no off, no weekends, no holidays. I worked as hard on Mother's day as I do every other day of the week. It is the same as it was when my kids were little. Life goes on everyday no matter what. One day of the week is no different than any other. I miss having Sundays as a day of rest.
What I learned today about ALS. Things change fast. So take the CNA when offered. You will need them! You can't do it all yourself no matter what you think. For the last year we have been trying to handle it our selves. I was raised to believe that you took care of yourself. It was no one else's responsibility to help you. You can't do it by yourself. This is a BIG illness and it takes a lot of energy, and there is a lot of doctor's appointments, and a lot of needs to be met. Most insurances cover a CNA and she/he knows how to do all those things you don't. If nothing else let them teach you so that you don't hurt your back. I am pretty sure mine is going quick because I really don't know what I am doing. I am learning as I go and many times someone will say "why are you doing it that way, try this way" and it will be so much easier!! Ask questions!! And let people help you! I know it will be hard but I think I would be dead if I hadn't had my brother here. He and my son in-law have done a ton to help. When Dan got to where he couldn't do the stairs they literally walked his feet on them while the other one held him upright.
What I learned otherwise. Plan their funeral. I am sure you have heard it more than once and I am sure you thought as I did "Stop saying that he is not dying yet" or "We don't need that yet" But it really did give me one thing I didn't have to worry about. And right now, one thing is a LOT!
We are living day by day. It is not easy and I am just trying to stay ahead of the curve ball most days. Today is a bad day it started that way and hardly ever changes once it gets started that way. I just hold on for tomorrow and hope it will be a better one. He took a few real steps with the help of a walker yesterday. That was really big so I will take a bad day today for a few more good days in return.