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Hi Karen, You have chosen a great place to come, all of the caregiving and constant emotional roller coastering can be overwhelming to deal with alone and friends are great but many just can't understand what we go through. I think we all thought we could handle it on our own at one point but...

Very sorry Blue, sending hugs and hoping your family can all find some peace through this difficult time.

I am so sorry :( everyone is very quick to judge how a caretaker should be doing everything but just remember no one is in your shoes but you and that can be so hurtful at times to deal with that on top of everything else. whether your son chooses to fight for his life or chooses to let it be...

I think all of these things must be so hard for a person to learn to accept, no one would "want" these things but sometimes they are the lesser of two evils. It was hard for me as well as a CALS to watch him go through all these things and letting him make decisions I knew weren't particularly...

My PALS chose to get a tube, it was a J-G tube, not a PEG tube, no one really explained the differene to us and the JG tube was very small and got clogged very easily requiring trips to the ER to unclog it. I think the reasoning behind the J-G tube was because it was a less invasive procedure...

I have to agree with those who are telling you to switch clothes or at least prepare and have them on hand, getting dressed will only get harder :(. We did open leg sweatpants and pajama pants and hemmed them if they were too long to avoid tripping. Shirts we just did t-shirts or no shirt...

Yes, he said it helped and he could wear it for an hour or so at a time, PT said he could wear it as long as he wanted but he would only use it for short periods I think because the wires are cumbersome. We also spent a lot of time pulling his arms to stretch them, it had to be done a certain...

Had the same problem with my PALS, he would cry out in pain all the time from his left arm, we used Perform Biofreeze gel and a tens unit to relieve pain, those were the only things that really helped until they put him on morphine late into his progression... Neither of those would be easy to...

3 things I miss: 1) drinking margaritas and staying up all night playing cards with my stepdad 2) his smile 3) the good laughs we used to have 3 things I am grateful for: 1) he is no longer suffering 2) the good memories 3) he went the day before what would have been my mom's birthday, I hope...

Very sorry Bittersweet, we just lost my step dad to ALS a week and a half ago and I am feeling lost as well. My mother passed suddenly a few years ago and my world shattered and I hated everything and everyone most days for a long time, I am much more at peace with my stepdad passing but it...