Hugs, Louise.
My hard core die off caused tears of fear, anger and hopelessness. I was frustrated with my body and hated the monster that had invaded my brain. But I am here to tell you there is hope. It does get better. Once I quit fighting the process and started accepting what was happening it helped. And like MarieLS said, making the connection between things are are happening helps keep you sane. This forum helps beyond words. So I would encourage you to definitely stay connected here.
I found it better to be
open with my kiddos. Yes, they were scared....but, we have learned to work through a lot as a family. It has increased their compassion and their faith. They have learned to talk about
their own fears and found out it's okay to cry and be afraid because they know, as a family, we can get through anything....together. It has also helped us to celebrate the great times of overcoming this disease. Don't overlook the those moments. They are truly moments to cherish and doing it together as a family is awesome.
You know your kids better than anyone. You know if it's best to tell them or not. I wanted my kids to know for several reasons, the main one being that what was happening with mom with not their fault. Me suddenly crying or being angry, even though it could seem directed at them, was truly not because of them, but because of what my body was going through.
I will pray peace for you. Keep breathing and always know you are loved. <3