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Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

Caregivers | Last Active: Aug 10 9:15am | Replies (109)

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@allegro

OMG, MY HEART ACHES FOR YOU...YOU HAVE BEEN THROUGH HELL ON EARTH....I KNOW WHAT YOU MEAN ABOUT THE PATIENT NOT REALIZING THE PRESSURE THE CARE GIVER IS UNDER....I APPRECIATE ALL THE GREAT SUGGESTIONS...….MY HUSBAND SLEEPS IN A RECLINER AS HE CAN'T BREATHE IN BED.....HE HAS BEEN CHOKING LATELY UNTIL HE RETCHES....SCARES THE BEJESUS OUT OF ME, BUT IT IS CAUSED BY HIS FEEDINGS...ONCE HE BRINGS UP THE PHLEGM HE IS OK AGAIN FOR AWHILE...ONE DAY AT A TIME, SWEET JESUS...…..I THINK THAT'S HOW THE SONG GOES...…….ALLEGRO (JAN)

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Replies to "OMG, MY HEART ACHES FOR YOU...YOU HAVE BEEN THROUGH HELL ON EARTH....I KNOW WHAT YOU MEAN..."

@allegro Can the Dr give him anything for the phlegm ? I get it in the throat and think I'm going to choke I take Guaifenesin for it Maybe the Dr can give him something It is scary 😬

@allegro Thanks, Jan. I am doing OK now. It was the hardest 2 years of my life, but I had more time to spend with my dad at the end of his life which meant a lot to me. My parents never had to take care of their parents in old age and really just saw their own side of the issues. Loosing control of things made them a bit demanding, but my dad did see how much physical pain I was in and worried about me. In my negotiating with him about getting a feeding tube placed, I promised I would get my spine fixed. The problem with that is no local surgeon would help me, and after the 2 years with my parents and 5 refusals, I sent a request to Mayo. After my dad passed, I came to Mayo and had the spine surgery I needed. Even as I was recovering after my spine surgery, I was getting complaints from family members because I couldn't drive to go help my mom and take her to appointments, and I said that I needed to be cleared by my surgeon.

I wanted to make you aware about aspiration and you might want to discuss the choking during feedings with your husband's doctor. It might not just be phlegm. My dad also had a nebulizer he used with asthma medication to get his lungs clear. That is easy to use and it helped. My dad reached the stage where he was unable to swallow anything correctly and had aspiration pneumonia a few times. It even happened from swallowing his saliva into his lungs. He had a feeding tube through his stomach wall and wasn't allowed any food by mouth which of course frustrated him since he didn't believe it was a problem. When a patient stops eating solid food the stomach shrinks, and then has less ability to accept a liquid feeding, so feedings become a slow drip with an IV bag. If my dad started coughing during a feeding, he could cough up his stomach contents, and there were some times when he started coughing and choking that I opened the stomach tube like a drain pipe to empty his stomach to keep it from going up into his throat and then to his lungs. He had to remain upright for an hour after a feeding before laying down to allow the stomach to empty. I understand your concerns and it might be a warning sign. Aspiration can cause a fatal heart attack.