Please help

[chrissymojo]

my mom has not been confirmed with als but she is presently in intensive care after a progression of als symptoms over the last year. We are so frustrated with the doctors and feel she has not gotten the level of care she needs or deserves. It is so heartbreaking for our family to just watch her fading away with breathing difficulties, heart arrythmia,no appetite,extreme weight loss. The writing is on the wall but no doctor has wanted to or has been willing to say specifically that als is what she has. Now as her daughter and care giver ,along witih my father, i am wanting to know if the end is near. She is so weak she can hardly walk to the bathroom. Her breathing is very shallow and is like a fish out of water. She does not want to eat but forces herself. She can barely speak. I am so overwhelmed by all of this and dont know what to do to comfort her. Please help

 

[brooksea]

I'm very sorry about your mom! Has she been evaluated at an ALS clinic?

There are helpful procedures and devices that can add years to your mom's life!

I must say, I've not heard of doctors withholding a diagnosed like this. How terrible!

I don't know what to tell you, except that you are probably your mothers best advocate and you will have to be very vocal!

You and your family are in my thoughts and prayers.

 

[Blackpool]

Speak for your Mom Chrissymojo and don't give up hope,can they give her a peg to help with nutrition this will help with energy level. Thinking of you and your family.

 

[chrissymojo]

What is a peg?

 

[Al]

Hi Chrissy. Sorry about your mom. A PEG is a feeding tube inserted through the stomach. You pour high calorie drinks down it to maintain nourishment. Has anyone suggested a Bipap for her breathing trouble? I think you'll have to start making a fuss to get them to do something.

AL.