oh my goodness, can I ever relate to this thread!
To keep it simple, (I can always tell when the conversation turns and when the questions start coming!) whenever someone asks about Dad and how he's doing, I usually just (flinch a little on the inside because I never know how to answer it honestly), 'he's fighting! keeping a stiff upper lip!' or something equally as cheesy in a quick as possible, one line answer that keeps me from getting too emotional.. sometimes, of course, if you hit me at a rough moment, my eyes still well up and I have to choke back a few words. That usually gets the message across better than words, however!
(Jeepers! I must be delirious from lack of sleep! I'm actually laughing at myself here. A hard balance between caretaker and daily work life. Oh my, we all find our ways to cope!)
I find the HARDEST thing to hear, is when someone doesn't understand what it is that is happening, says 'well, I hope he gets better soon!' AARRRGH! I KNOW they mean nothing but the best and they don't know any better, but REALLy it is like salt in the wound for me. Also, I know people mean the best, but the daily 'how's your dad doing?' question every DAY or every time someone sees me, also kills me. Sometimes if I am away from Dad for a few hours, I am trying my hardest to give my brain a little break from all the clutter ALS causes inside me. It's hard to be reminded of it in even the split second I might be able to give myself a break from it, when it is ALWAYS with you.
Anyhow, I hope some of you can relate, and maybe can get a little chuckle from me just jotting it all down into words!
But on a positive note, despite all the bleakness that the disease provides at times, when you have an enlightening moment, do any of you just feel like you just don't have any time to 'suffer fools'? Someone said this to me recently, and it was the most perfect phrase to put into words how I felt. I just don't have the time or patience for petty things that just don't matter in life anymore. Seeing what I see each day with ALS, makes me hold certain aspects of life and relations in a whole new light. As much as I despise the journey we're undergoing at times, I really feel as if there is something enlightening that is happening to me. And I personally am just a mediocre- spiritual person at best. I accept God. But sometimes I still question...