Dear Momlovetobake, I too am so sorry you are in so much pain. This illness is so devastating to not just us but our loved ones as well. I think (on behalf of your husband) he is very scared and is just hoping if he does not react to it, it will go away. I too was the leader of my pack, always in control, patient, encouraging, and a caretaker of many of my family members in thier time of need. But as you stated, it begins to deminish as we are simply not able to do and be that person anymore. I think the turning point for me was when I came out of my wheelchair and pinned my daughter up against a wall. They all just stood frozen as my son pried me off of her. I was shaking so bad, and we all started to cry. I was just dealing with so much physical pain, and she was just being a normal 16 year old (mouthy), but I snapped. I could have hurt her. That was when we all knew that something was severely wrong with mom. I have come a long way since that day, knowing I would never go there again. So Mom, scream if you need to scream, get counseling if you need to, learn meditation, take time out, find a quiet place to go to when you feel the need to take a break. I have a room that is my sanctuary, I go there three or four times a day. I have candles, a heating blanket, tapes, etc., to relieve the stress that this induces, and I always begin my quiet time with prayer.

It is the loss Mom, they miss the old you and they want you back. It is a lifestyle adjustment for the whole family, unfortunately, we get it first. Be patient with yourself and your husband. He will begin to understand as the fear withers and prayfully he will step up to the plate. As Loretta stated, print some articles out on the illness and the devastating effects that it causes, that was very helpful for my husband and he then began to explain things to the kids. Time is a great healer. God Bless you and your family, I will keep you in my prayers.

Jeanie

P.S. I am ashamed of that moment and have never told a soul. Don't allow your frustration to take you to that dark place.