Jennifer,
First, let me say how sorry I am to hear about your Mom.
My husband started having symptoms in December 2009, and was diagnosed with ALS in April 2010. He passed away on our daughter's first birthday, November 6, 2011. His progression was fast and continued the same pace throughout. First month he had tingling and weakness in his left hand to loss of fine motor control skills. Second month it attacked his speech. Third month it was his emotions attatched to his speech. Fourth month he was falling. It did not let up.
That being said, every person with ALS has a different progression rate. Some only last 6 months, and there are some cases where it was so slow to where it went into "remission", and some cases as long as 20 years. That being said, from my experience, whatever rate they start at, for the most part, they continue that same pace through out thier ALS journey.
Taking care of someone with ALS is a FULL TIME job. Because it attacks thier speech, having someone else watch them, is hard, because other people simply do not understand thier special language.
Social Security Disability and Medicare, once she has her diagnosis can be fast tracked and can be retrograde.
One question I think hasn't been addressed, is... what does your Mom want? At this point, her wishes should be primary. Have you talked about hospice versus nursing home? Have you talked about DNR things such as Ventilator, Trachea, PEG feeding tube, etc? Have you guys talked about POA's, living and last wills? Have you talked about where and how she wants to die (ie: at her own home, at your home, in a nursing home, with/without heroic measures, etc)? And another conversation, might be to pre-plan the funeral.
I know all of the above paragraph sounds a bit morbid, but with her progression, I would say, now is the time to talk about all of that while she can still talk. She will never be able to communicate her wants and desires better, then right now. More then anything, understsand, she is going to lose ever human decency known to man. I would think that her wishes would be what should be the answer to your questions, and the questions that you should be asking now, is.. how can I make her wishes come true?
My husband pre-planned his funeral. I know that sounds a bit morbid, but he did it for a few reasons. 1.) He wanted to take away that burden for me and take care of me after he was gone. 2.) He wanted to make sure it was his wishes, that way, his family would not try to change the way the funeral went. 3.) He wanted his funeral to be about the 3 greatest loves of his life... his sweetheart and his two children.
One of the things that I am most proud of, is that I honored his wishes. He died at home, without heroic measures, in hospice without a vent or trachea, with his sweetheart at his side.
Know that this is a very hard journey, as I am sure you are quite aware of.
I hope you are able to honor your Mother and her wishes as she walks the most heartwrenching part of her journey of her life.
~ Becca