I have read hundreds of posts over the last 3 years but this is my first attempt to communicate; the need to talk finally won, I guess. I can't tell you how many times all of your posts made getting through the day possible... there are some things that only you all can, and could, possibly understand. My m-i-l was given the news( by process of elimination ) that she had ALS a little over 3 years ago; looking back there were signs before that but we could never have guessed the prognosis would be so sad. Anyway, the onset was bulbar,slurred words and some difficulty breathing. Today she is totally bed-ridden,PEG, Bi-pap at night, communicates via a dynavox but requires assistance as only one arm works and it is very limited in mobility and strength. We have in home care a few hours a day (except on week-ends) and some help from a local gov't agency. In total we get about 7-8 hours a day which is great because we have 5 kids ! My husband and I did it alone until 8 months ago but I told him I was gonna have a nervous breakdown if we didn't get help. She was so resistant to having help and we felt bad so we didn't push the issue, but she wasn't really thinking of the toll it was taking on us. Even today with the help it is still difficult ; there is a constant stream of people in and out of the house so privacy is nil and though 8 hours is helpful there are still 16 hours left in that day! My oldest is 11 and the youngest is 3 so I am still incredibly busy with the kids and my husband works full-time....needless to say we are exhausted . I have such issues with guilt because I want so much for life to different than its current state but recognize that it isn't her fault and she obviously would like for things to be different as well. My kids are getting older and I feel that I am not being the parent I long to be nor the one they deserve...We don't get the time back. And while taking care of my m-i-l is important and I believe that it is teaching them compassion, I sometimes wonder wether they will be resentful.... I am reaching the end of my rope and so I guess I am reaching out.... thanks for being out there everyone.