I feel so helpless right now....

[SheilaZ]

Jan 20, 2016 my Hubby was diagnosed with this horrible disease called ALS....through it all, he's never complained...not one word....he always says.."why complain, it is what it is...I can't change it". We've been blessed with so many great days..made each other laugh...instead of cry...and even though he was put on a Trilogy machine on Jan 2016...in a wheel chair by March, Motorized chair by October...he still has a voice...though it's a whisper now...difficult to understand...he's been a Trooper....he's a retired State Trooper....he was so big and strong...I've watched his body change daily...I see his struggles...from not even able to hold a cup now.....and to me he's never been stronger! Now as I watch him sleeping...my heart is breaking....I'm scared...he's not eaten anything since Saturday...he does take sips of water for his meds...he's having anxiety attacks...he sleeps so much now! I just loss my Mom last week...she had lived with us since my Dad passed away 12 yrs ago...she had a sudden short illness that just broke our hearts....I miss my Mom...so very much...I am truly leaning on our Lord. My Hubby is my world.....I'm praying for my Hubby....I know so many are sick with so many diseases out there and I pray for everyone to be healed...I pray for cures! I pray for you all! I called hospice and when they came they wanted to take the very thing that's he's used since diagnosed...his Trilogy machine...of course I said "No". I don't understand their thinking...not the woman....but those who make the so called guidelines....he's not even on Medicare....yet they have to follow their guidelines! Very frustrating....but he still has his Trilogy machine....and a home healthcare worker will be coming in tomorrow.....I will always fight for him!
Sorry for the long post......just needing to talk......GOD Bless you all!!
Sheila

 

[soonerwife]

Sheila, I am so sorry you are on this journey. There is no need to apologize for your long post. That is what we are here for...

I heard alot of my story in yours, especially about him being strong and never complaining.

Glad you stood your ground and were able to keep the Trilogy. There is so much the medical field doesn't know about ALS.

HUGS! Again, we are here for you.

 

[Firefighter58]

Good to hear from you Sheila, continue taking care of that Trooper and don't let any one tell you what you should be doing.
Al