Sandy,
This ALS is just the pits isnt it? Heart-breaking for sure. I know from your many posts what an amazingly strong, courageous person you are...how lucky your husband is to have you.
This past week we have been 'down' too. Seems the holidays gave us a brief distraction with some gift-buying and some visitors, now that they are over we realize that we are still on this sinking ship.
I find it so difficult to see my husband in pain and discomfort that sometimes I fear I cant stand it anymore. That is a big burden for us CALS to bear too....feeling that we have to make them comfortable, when the disease keeps throwing out new discomforts, sometimes it seems on a daily basis. Almost everyday I cry in the bathroom at some point because I feel so bad for his pain. I also hate that I seem to have to cause him discomfort so often, whether it is suctioning, or slinging him around or whatever, I feel so bad if it doesnt go well and he has even more discomfort. He is tougher than me and keeps me going---he often reminds me that 'it isnt your fault' and 'there is nothing you can do about it' when I am so down about not being able to 'fix' things for him.
Please remember that you are doing a great job in the face of an almost impossible task.
Sometimes I take solace in thinking about the fact that suffering is really an integral part of living, and I think about people all over the world, in Darfur, Iraq, and other war-torn areas, or areas of famine and poverty.....and then I feel less alone with our woes here. (But sometimes nothing helps and I am just heart-broken at the losses we are experiencing--and crying helps)
Peace to you and your husband...Beth (CALS to Shannon, diagnoseded 8/04 at age 40)