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Distinguished member
Feb 13, 2007
Loved one DX
My mother passed peacefully in her sleep Oct 23, which I am very thankful. Mom had been declining fairly gradually until the last week, and then things just went fast forward. Mom never really had any breathing problems - at least not until the last week and that was mainly due to secretions being hard to manage. I guess I had believed that as long as mom was not having "noticeable" breathing problems, she would be OK. Mom had some problems with vomiting about a month before she passed, and we had given her medication to help with nauseausness, which helped. Then, the last week, she could not tolerate her feedings at all - almost as soon as we started her feedings, she would get sick - even with medication for nauseausness. We checked for residual, and that was fine. We had hospice for about one month before she passed, and they said her body was just shutting down. Does that make sense? Any why would the body just start shutting down? Again, it is really hard for me because I don't understand why? I really thought all ALS patients would have breathing problems before passing.
I'm very sorry for your loss and don't have an explanation. Holding you in my heart!
I am so sorry for the loss of your Mom. I understand the wish for answers. My FIL died suddenly- we didn't even know he was sick- and though that was years ago I still wonder. It won't change anything, though. We still miss those we loved. Cindy
Sorry for your loss. May your mom rest in peace, and may He grant you the comfort you so much deserve. Wish I could help you with answer, but I cannot find the words. I do agree with the shutting down part. The sad part is we never know when our loved ones will be called Home. God bless!

If it will make you feel any better, the body has a way of knowing what's going on, from my experience, once one system starts to fail, it becomes a cataclysmic chain of events. Often, it's triggered by one organ shutting down, maybe, in your mom's case, her stomach couldn't bear the difficulty of handling food being so sick and unable to move around as before, we will never know that, but, it likely triggered the chain of events.

In recent times here, it seems, passing of PALS, has happened at almost unexpected times and very quickly. Well, i guess the silver lining is her suffering is no longer her issue, in a way, she's beaten the disease. She's in peace now!

God bless you and your family thru these holidays.


Hi Midwestgirl

My mum was very similiar, no real breathing problems apart from secretions which she managed with suction.

Then, about 5 weeks before she died she got a tickly cough which lasted a few days. The Hospice doctors said it was the start of the muscles failing to her lungs & this would be the final stage of the disease with her only likely to live for a few weeks more.

Over the following 5 weeks the cough disappeared & whilst she deteriorated in other ways (mobility mainly & pains in her legs) her breathing seemed fine. She complained of being too tired to keep her eyes open and the pains in her legs became so severe the only way they could relieve her distress was through sedation. At this point she was also unable to tolerate her feed - the nurses said it was like anyone who is very ill, the last thing they want to do is eat as the body can't handle the digestive process.

The last few days her breathing remained steady and whilst we expected her to go any day it didn't seem that respiratory failure was likely. However, on her last day, her breathing changed (imperceptably almost) and became so regular it was like clockwork. I therefore did not expect her to die and this came as a huge shock that evening.

The doctors said that on that last day her body had been shutting down and the breathing was automatic rather than controlled.

This sounds similar to your mum's story. Both our mums are at peace now, thank God.

In my thoughts

Thank you all for your responses - it helps to know other people care, and understand, the emotions of losing a loved one to ALS. I guess I just want to feel certain that there wasn't something I could have done differently.

Rachel, our mom's lasts week was similiar. When a person without a PEG tube gets to a certain point, they don't want to eat. So, it does make sense that the body does get to a point where it just can't handle digestion any longer. I guess I just wasn't prepared for how fast things progressed, but yet when I look back I do see some tell tale signs. And, yes, once one system shuts down, it really is a chain of events.

I truly am glad she is no longer suffering, and mom had such a strong faith I have no doubt she is in a better place. Don't we all just wish they could somehow let us know what heaven is like!
I'm sorry for your loss. More so, because it came without warning. I pray for peace for your family during the upcoming holidays.
I think you did all you could with the information you had regarding her secondary illness (cough/cold). You are right, she is no longer suffering. No longer wondering how it will end and if it will be painful. (((Hugs)))
God --this scares me

I can't tell you how sad I am that you lost your loved one so fast - I've been banking on my frinend's progressive disease to help me cope with what he's going through. I am so concerned about "colds" - him getting infected and choking on sludge - he has no strength to cough... I notice he was struggling today and he " blew it off" saying it was his allergies. The last cold he had, almost did him in - that's why I worry about him exposing himself to this crap at work *(school). After reading your post, I feel like this all could happen so fast - no matter how much support he gets - the choking on gunk thing is happening.... I am so sorry your loss came quicker than you expected- all my toughts and support
Hi swmn. You should talk to your friend about a cough assist machine. It will help dislodge and bring up the gunk.
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