Recent content by Amanda81

My last post was a plea for help. Things seemed to get very bad very fast. Then at 11:15pm on February 12th, I held my mom's hand and watched her take her last breath. My heart is aching, but I can see her so happy and so free in Heaven already. And she is already making sure I know she's...

zoohouse - She doesn't want additional fluids that would only prolong the inevitable. She will ask for them sometimes like yesterday, but she doesn't want to be on a schedule of getting them. We also tried a catheter a while back when she didn't want to get up to go to the bathroom anymore and...

She is getting about 80-100 mL's a day. Today she asked for extra fluids in her tube. I'm guessing her body was craving hydration. She is still producing urine, but it is hard to tell how much. She only lets us change her diaper twice a day because it is so taxing on her energy level to do...

Thank you all. I have been reading about signs of death. They separate them into two categories. The first category being the one I think she is in and they estimate 2 weeks of this. The next category is approximately 3 days and involves a coma or semi-coma condition. She will still be...

My mom is at the end. You all have been an immense help from the beginning, before we even had a diagnosis. I need you now more than ever. She has slept all day for the past two days. Today she got oxygen and I think that is part of it. But I think we are also just close to "the end". What...

Kim, you sound just like me! My mother and I have never seen eye to eye on a lot of things, we just think differently. So we still butt heads a lot, even though we should be spending these precious last moments together in better ways. She was diagnosed December 2012 and we are near the end...

@affected - Hospice comes every week and is aware of her condition. They haven't been the great help that we thought they would be. The RN keeps pushing the morphine and I keep telling her that my mom doesn't want the morphine because it makes her feel worse. I was the one that had to suggest...

Hello, everyone. My mom's discomfort level has recently increased rapidly and drastically. We are reaching the very end of this battle and comfort is priority above all else. Hospice has provided liquid morphine drops that they say help her breathing (maybe by making her more calm?) and also...

jellis - We are doing gravity feeding with an open syringe. She passed her swallow study in July when the tube was placed and so her insurance (Medicare and BCBS) isn't covering any supplies. The pump would be great because right now I am going to her house every 2-3 hours to do a feeding (she...

Not an option at this point. She refused to do the feedings after the first bad experience, but when she choked really bad last night she decided nothing more by mouth. Thank you for guiding me to your post, I will go take a look.

I need help from all you experienced folks out there (PALS and CALS)... My mom needs to start tube feedings, but the first time we tried it made her stomach hurt. What is the best way to introduce the feedings to her system to prevent this? How much do you start giving and at what time...

All of you with roll in showers, where did you purchase them and who installed? What is a good price to pay? Can you post pictures? I can give my e-mail address if that is easier. Thanks! Amanda

My personal opinion... GO. It's 10 days and it's your life. I took my mom to Hawaii 2 months after she was diagnosed and am so thankful... the trip would have been near impossible even a couple more months down the road. Your family should understand. Do what you need to do to feel right...

I drive my mom 2 hours to St. Louis to an ALS clinic. It is beneficial in that they are specialized in ALS and you get all your appointments over with at the same time. We go every 2-3 months as recommended by the clinic. Your neuro doc is probably the one to make the referral to the clinic...

My mom fell today and was prescribed pain meds in liquid form so she can push through her tube. Is the process any different from taking crushed meds through the tube? Do you still need to flush? Will mixing with water dilute it? I don't know the best way to administer a liquid form. Thanks...