Re: Mom in end stages of ALS
I am sorry for what you have been going through. It is heartbreaking to see those we love suffer so much. The one thing we can remember is that sometimes our presence and love is the most we can offer. You are right.. this disease sucks, and right now we don't know enough to change the outcome.. I guess it is like most cancer was 40 years ago. My husband was only 40 when he was diagnosed...I think age does come into play, because he lived with als for nearly 5 years...which is a long time to live with als. He took no medication for treatment and he ended up with respiratory failure.. he died of pneumonia about 6 hours after I took him to the hospital. It was strange.. after all those years of living with it and and fighting it.. 3 days before he died he was still going up and down two flights of stairs.. and he walked from the car to the ER and got up from the wheelchair and into the bed at the hospital the night he died. It was very sudden.. and after all that time myself and my kids were still not ready for it. I know families feel alone.. I know often we feel helpless, like no one knows how we feel. I know at least, I felt that way. I wish to everyone out there who is reading this that I could offer a real hug.. but this is all I can do. .. post on here.. so although technology has its limitations, it also brings people together in "spirit" to lend each other comfort and support to one another. Behind each of our postings is a real person who has gone through or is currently experiencing real sorrow and or fear.. so although it feels like ALS take everything, I learned more about the depths of love than I ever could of, simply because I had no choice..