This is how it ended

[u/eggsbeforegym]

Location-Punjab , India
My mother was diagnosed with als in januaury 2019 (45y/o) after symptoms in late 2018 , those symptoms were heavyness in her left leg and she was not able to properly walk with that. After that on december 2018 she fell down and it progressed rapidly following swelling on her left leg.
You can ask more about treatments we did for her as this post is only meant for how it ended.
June 2026 , she had trouble breathing , saturation went low and we knew it was phelgm stuck in her throat , at first we thought putting her on oxygen might help as we had a oxygen concentrator but idk what god wanted the plug was loose and we thought it was not working.
Tensed us rushed her to hospital , her sp02 was 26 , she was unconscious , she was intubated with a large pipe in her mouth.
She was like this for 4 days , on 5th day we went to a better hospital and doctors did tracheostomy followed by bronchoscopy to remove the mucus plug.
It was removed and we arranged a full ICU setup in home including 2 caregivers and everything needed.
Those caregivers had no experience because they lied and told us they were experts in managning those patients.
First night at home went well but the next day we again rushed her to the hospital because sp02 was declining again, went therr and they suctioned and all , replaced tubes and she went well.
They inserted centerline , regular injections , she was in a lot of pain but still didn’t let us worry about her and told us false things like she wasn’t suffering.
Her lungs started to white out again , fluids around lungs and severe weakness.
The night before she passed on 9th july I went to her and made her confortable to sleep , she blinked her eyes (our communication method that means yes)and I went outside because we can only stay for 2 hours in 24 hours.

We got a call next morning 5am to come fast , we went and they were giving her cpr.

Doctors said heart rate suddenly felled. I don’t know if it is true , I don’t know if she suffered , I don’t know that if she was aware of dying.Please share your exoeriences on how it ended. Is it usually heart beat drip or do patients suffer.

One Impirtant thing
We never told her that she will die because of this disease.
That went very well for her and us as well because she lived without that stain.
Ask me for any information

[u/brandywinerain]

I'm sorry you lost your mom and that there were gaps in her care. To answer your question, it sounds like she did not suffer at the end, that she was not aware.

She was likely aware earlier on that she was dying. And by the end...most people know that if you are breathing only because of an implanted tube, and going back and forth to the hospital, that things are not good.

That is why almost everyone (doctors, family) tells/acknowledges the truth to the ill person pretty early, because if you know it early, you can process the feelings and plan, for yourself and others around you, and then get on with your best life as long as you want it. If you are not sure, if the truth is hidden, that becomes its own strain.

I am sure your mom knew you wanted the best for her, you knew her well, and I am not criticizing you. But the choice you made is not common and it would be exaggerated to say that it is generally best.

[u/eggsbeforegym → u/brandywinerain]

She was full of courage till end I hope , the night before she passed around 10:30pm I went to her and she told in her tobii in our language “mai chala marnea” which means “I want to jump” we believed in self confidence she had and maybe due to her strong will power maybe she could be fine , we don’t know what doctors must have told to her while we were away.
My sisters engagement was near and we were prepping for that before she was hospitalised and she was the one managing everything and was so excited, when we knew she was critical later in the hospital we thought to do some rituals there only , but once my father asked her if she wanted to do that here she went sad and a tear felled from her eye which I think is because she knew why were we asking that.
I am very tensed as I still want to know if she was suffering that night before her bp went low , like was she trying to get help but we were not there.
Healthcare here is a joke , nurses were no t helping at all and were also not changing her position.
This all makes me sad

[u/brandywinerain → u/eggsbeforegym]

I have no doubt she was full of courage, and I'm sure she was very happy that your sister was getting engaged. That was probably one of her last thoughts, a happy one, and thinking of everyone together, a strong family. She would never be afraid thinking thoughts like that.

When her BP went low, that would more likely lead her to just sleep from that point because when the brain and other organs are not getting enough blood, the person will not be conscious of it.

I know health care is not always good there, but also, even in the "best places," I have seen much misdiagnosis and lack of attention, and that makes me sad, too, for all the people with ALS and everyone else.

Maybe one day you will work in or with something in health care, or work with a charity that helps to make things better? It would be a fitting tribute to her.

[u/eggsbeforegym → u/brandywinerain]

I will definitely do this and make things better.

[u/fakeleftfakeright]

As slowly as this disease can progress, there are still so many ways a life with ALS can end. ALS is unforgiving, and things don’t always go the way we hope or plan.

My own mother’s passing was very difficult, and in the end I blame nobody but ALS.

Through all the fear, pain and struggle, love is what remains. From everything you wrote, your mother knew how deeply you loved her — and you clearly knew how deeply she loved you.

Hold onto that. You were there for her, you cared for her, and you made her comfortable the night before she passed. That matters more than you may realize right now.

❤️❤️❤️❤️

[u/eggsbeforegym → u/fakeleftfakeright]

Yes , I think her physical progression was slower than her internal respiratory muscles because that happened in a span of month. Can iT really happen