everyone is getting frustrated

[Angela44]

mom has all of a sudden began to progress so quickly. she sits in her lift chair 24/7. she was diagnosed in july 2010. she was doing amazing until november 2011. all of a sudden things sped up. she now cant use her right hand or arm. left hand and arm are almost useless as well. her speech is completely muffled and can not articulate any words or letters. her lung compacity is diminishing according to her nurses and drs. she is only able to weight bear on her legs for moments at a time. she is on tube feeds but tries to still have some soft foods to taste, although she chokes on it. she is experiencing lots of spasms and acute periods of pain. she is on multiple meds for pain and anxiety. she sleeps alot and when she is awake she is always exhausted. she got bipap last week but is having a hard time keeping it on. one minute she is dry and the next she has too much saliva. she only gets a couple hours solid sleep at a time even though she has sleep meds. she is progressing so quickly the paliative team doesnt seem to be able to keep up with her quick changes. and we live in a small area where our palliative nurses dont know anything about als. so frustrated. mom doesnt want to die but doesnt like her life right now either. am i crazy or do others experience these frustrations. i would love to hear others stories to know i am not alone in this. please share if u are able.

 

[trfogey]

You aren't alone. Everyone who has had to care for a PALS with quick progression goes through what you are going through. Take a look at the Caregivers forum and you'll see plenty of folks with the same frustrations you have and how they dealt with them.

Hang in there. Thanks for taking such good care of your mom.

 

[tammyg]

You are an amazing daughter that any mom would be proud to have. My dad passed in 09,from Bulbar\ Palsy ALS. I think about him everyday. I as well did not even know what ALS was until my dad. The Bulbar basially works it way down and starts in the throat. He could not talk.had a PEG. And was just starting in his legs when he passed. Going through this I believe Changes You as a Person. How can such a horrible disease like ALS even exist with all the miracles of medicine. We live in the city with the best hospitals, Hopkins, Univ of Maryland and nobody can figure it out. I spent alot of time grasping at straws, why can't I fix this. Watching a parent or anyone go through this is very humbling. Along with asking alot of why, why, why. You have come to the right place, everyone here understands what you are going through, and they are here 24/7. I wish I knew about this site when my dad was going through this, I really needed information with answers. This is like the biggest test of your life. Give her a ton of hugs and let her know everyday you love her

 

[Jim Mulligan]

I have no advice to offer, except as tammyg said, let her know you love her every day. Given what is happening in you and your Mom's life, a lot of frustration is to be expected. There is no way around it. You are very kind to be supporting your Mother, and you can always vent here.

 

[hangingon1]

Als is very deceptive when trying to figure out when a person is going to end stage. I have thought two times in 4 months that my pals was a goner, and she bounced back both times. A rapid decline does not necessarily mean a soon death. Just make her as comfortable as possible and show her tenderness. I know it is so hard to be a caregiver. Sometimes I look out of the window, and say to myself--Someone has a life out there. Someone is happy and enjoying life. Someone does not have a care in the world. Why not me? I do know that I have more character since being a caregiver and am much more sympathetic to suffering than I used to be. In other words, we are going through a life lesson. We think school should be over and one day it will. But for now, we are building character and are being kind when kindness is hard. One day we will get re-payed for these acts.

 

[Angela44]

thank you everyone for the replies and words of encouragement. one day at a time.