Recent content by tiabye

Hi everyone. My sister is in her last days. Hospice started last Friday. She is now off her bipap. Her pulse today is 47. Did anyone have signs on how much longer we have with her? It's so frustrating that I can't seem to do anything for her anymore. Any advice would be great! Thank you.

Hi Pete, I wanted to say thank you for sharing your side of what is happening so that someone like me can understand my sister better. She is in the last stages, on a feeding tube, bipap 24/7 and sleeps most of the day. She can't talk anymore and can't use the Tobbi cause her eyes are not strong...

My mom got the idea to give Jenn Pedialyte for her dehydration. Does anyone see anything wrong with this? We are waiting for doctor to get back to us but we don't know when that will be. Thank you!

So we are being told that since my sister is on a bipap machine that medicare will not pay for hospice. Some say that they will take her but eventually she will have to come off of it since its "prolonging her life". My question is for the CALS that have gotten hospice. What all do they do for...

I am so sorry to hear about your dad. I know how hard it can be. I am going thru the same thing with my sister. Today was a rough day. She is on a bipap, and today she is breathing hard. There is a lot of rumbling coming from her chest. They say that her bottom lungs have no air getting to them...

My sister was diagnosed 4/2015 with ALS. This has been the hardest years of our lives. I am here to get help through this time. We are at the end of this horrible disease and every time I think it can't get worst....it does!

I just wanted to post what we went through yesterday in case anyone has this issue so you know what we did and hope that it might help someone else. This is not something I ever thought would be a problem with ALS. Last night my sister was in distress and we couldn't figure out was wrong, now...

Thank you guys. We have a monitor where we watch her heart rate and oxygen level. They are usually pretty good. Oxygen usually 97-98 - heartbeat usually around 88-90. No fever thank goodness. Well last night She was in distress again and her levels were dropping and heart rate going up. It took...

So my sister has not slept since Wednesday. I am concerned cause everything that we have tried is not working. With all her meds she takes every day and she gets Benadryl, morphine, melatonin, on and on - Xanax! She used to sleep like 20 hours a day and now she is not sleeping at all. Has anyone...

Thanks everyone. My mom does put coconut oil on her hands and feet, but she doesn't really like it. Just recently we realized that just touching her arm hurts her. Its like she is very sensitive to everything. So I stroke her arm and she cries cause it hurts. So I think that is why I am...

It would be great if there was a machine that she just had to think what she wanted to say and it would say it for her. She is in there, I wish that she didn't know what was going on so it would be easier for her but that's just not the case. Last night was the first time and this morning the...

Astugi - Thank you. I mean she used to be able to use her Tobbii but her eyes are not strong enough for that anymore. We ask her questions and she can barely move her head anymore to say yes or no, that is if she is not ignoring us, which she does a lot lately! No she cannot talk anymore. She...

Hi - My name is Michelle and my sister was diagnosed with ALS April 2015. She seems to have got it pretty bad and drawn out. At first it was just her tripping a lot, then she would just fall and couldn't get up, couldn't get off the toilet or out of bed without help. As it got worst and worst...

Thank you all. Last week was a roller coaster. Friday during the day she seemed back to "normal". But then Friday night she had a lot of mucus, so a lot of coughing and her pulse was up to 136. We got it out and calmed her down. It took a few hours but got her back to 79 rate. Then Saturday she...

Its a chore to get the morphine prescription from the doctor as they have to mail it and they are in Tampa. The to find a pharmacy that actually has enough to fill it, or even has it at all. We are still waiting for them to fill the one that my mom took in on Monday! My sister is on a feeding...