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We are actuLly in the same place diagnosed. Remember too that caretaking is broad spectrum. I am doingbthing for Brian he used to do himself or for me. That's for sure.

Good thought Gooseberry! Thanks.
 
This has been a hard thread to get through. I can identify with so much of what has been said. ALS exhausts emotionally, physically and for many of us financially. So often we're between a rock and another rock. Watching this disease ravage our loved ones, our relationships, plans and ourselves. It doesn't matter where on the progression arc you are, just getting through the shock of diagnosis or getting hospice in place, it's relentless. No time off to catch your breath or gather your wits. Get your feet back under you. I don't think any sane person wouldn't want there to be an end.

There is one thing I take comfort in and it's one thing we all share. We stuck. There aren't a lot of times in life that you get to show someone that you love them for better or for worse. Unconditionally. That you will stand by them, come what may. Worse came and here we all are. Maybe a bit battered, but still standing.

Paul

Prince of Persistence

=o0:neutral:0o=
 
Paul that was so beautifully said and to me the crux of the importance of our side of things.

I have had a lot of peace in the fact that I stuck with Chris. I honoured his choices and I loved him to the end. All the rest was the monster and out of my control. I controlled what I could, my hopes were centred on those things and I have that now.

Lenore, you bring these topics to the front so that many CALS are greatly helped by seeing they are normal - the situation is what is so far from normal.
 
I loved Steve with all my heart. We had company the weekend before he died and he had a hard time talking because he needed his trilogy 24/7. Still, he did without it for periods so he could communicate. He said and did things that made me wonder if he thought the end was near. I had to help him off the commode and off the couch because his legs were done and would lift them into the bed. I feel that he chose to try to walk because he knew it wasnt sustainable.

I was incredibly sad and relieved when I got the alert. It is just now, a year later, that I am beginning to truly heal. ALS rips you apart. Once your pals passes, it is very difficult to put the pieces back together. This is the first time I have been able to take care of myself in years. ALS took our retirement, years of raising our son, and our family. My son and I refuse to let it destroy us. We miss Steve pre ALS very much....we do not miss the angry, mean spirited man he became.
 
I so respect your honesty Gooseberry. That is exactly the sort of thing people so often do not say and should because it helps others to hear it.

I have grown more honest with people who ask how I am on any given day. I told someone tonight that I felt like I was living in an Independent Film Channel movie. It has to be happening to someone else.
 
You are so right, what happened to Chris, what happened to our dreams will NEVER be OK. Anyone who tries to tell me some trite crap could notice my eyes glaze over as I hold my breath and wait for them to just shut up and go away. Usually they don't however because they are wrapped up in whatever idealist idiocy they are spurting.

Well said! It is indeed idealistic idiocy many people spew. Truth be told, family members are clueless when it comes to knowing what it is like to be in "that place". The "ALS cage" that we are all in.
 
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