I heard from Moe that Paul Manning died at 3N a couple of nights ago. "He was taken off the ventilator out of his own wish." Moe sighed. "He was my buddy."

Yes, he was everyone's buddy too.

Paul had muscular dystrophy. Its a disease similar to MS. But with Paul it had progressed very fast. Since I have known him, he was on a ventilator. The disease made him a quad. He could not move from the neck down. Might move a finger or two just to push the call light for help.

But as far as I remember, he hardly asked for anything. He seemed to be too quiet and calm for his condition. Most patients on the vent appear VERY anxious and restless. The call lights are on CONSTANTLY-- for anything and everything. I want to be changed. I want to be turned. I want to drink some water. I want to eat. I want my door open. I want my lights off. I just DO NOT seem to be comfortable under my own skin.

Of course you don't.  You are a quadraplegic. You don't move. You don't feel. NOT ANYMORE.

Paul could not move. But he could feel. I guess thats why he was quiet. He was not quite sure where he was going and what he was going to be. At first he choked on food. We put in a feeding tube for aspiration. Then he developed a pressure ulcer at the buttock. As big as a soup bowl. He asked for a dilaudid pump because he needed a shot every 15 minutes. Then the surgeon I&D'd the ulcer bigger and bigger that he needed a wound pump. For what? The wound was right at the coccyx. Everytime he had a bowel movement, it was soiled. Then it needed a total dressing change. The wound never seemed to heal this way.

It takes a lot of work to maintain his daily routine. And its only his baseline. Meaning, even if he was not sick, he needed someone to take care of the trach, the vent, the feeding tube, the wound pump, the PCA pump and foley catheter for him in addition to cleaning and turning. But Paul had always insisted to stay at home. He said he felt more comfortable staying at home with his daughter and the grand babies.

So Paul's daughter had been the main caregiver. There was also a visiting nurse to check on them.

"So why did he want to be off (the vent)?" I asked Moe. "I thought he liked to be at home with his family."  "I don't know. But there were rumors that his daughter had been busy since she moved to a new house. And one time she went to Chicago for 3 days leaving Paul alone at home..."

3 days ALONE at home?! I'm not sure if this is negligence or abuse. Was it the last straw that he made up his mind to leave?

I remember last time I took care of Paul a few months ago, his daughter called 3 times a day checking in. "Tell him I'll come to see him this afternoon," she said. Then another phone call in the afternoon at 4, "Tell him that I'm at school, but I'll try to see him in the hospital after school,"  she said. "Tell him that I love him very much...and that I'm at school but I'll come by the hospital tomorrow," she called the last time leaving this message to her dad.

Thats exactly what I passed to Paul. His bright eyes suddenly went dim and then looked the other way. He was NOT happy at all. To the point that he did not believe her. I felt bad for Paul. All he wanted was to see his daughter. But who could blame it for the daughter? She also has her own family -- 2 kids and a husband. She is entitled to have her own life ouside taking care of dad. She was looking for a new house at that time.

"Oh boy I had a long day, Paul. I can't wait to go home and have a good ol' drink," I was trying to lighten it up for him. "Have one for me," he mouthed the words and gave me a VERY bitter smile. Paul had always been alert and awake. He knew what he was doing.

"...he verbally gave the consent in the morning," Moe said, "And they took him off at 9pm. Before 2am he passed away."

I wish all the best for Paul. And will DEFINITELY have that good ol' drink for him.