For Caregivers

Melissa Maxley

Dan

Dan

Caregiver for Significant Other

I first heard the term encephalopathy about 10 weeks after Dan was revived by CPR after having bled to near death in ICU. We finally made it to a medical center out of our home State that would help us. Dan had been tapped at least 8 times at this point and was filling up again when the doctor said that he had a choice of another parenthesis and continued ascites or to have a TIPS procedure put in place which if worked could cause confusion or a term called encephalopathy. We took our chances and chose the confusion. We could deal with confusion, we thought.

Now, 3.5 years later and 3 hepatic encephalopathy comas later, the word confusion doesn’t even come close to explaining HE. Two days after discharge from a close to 3-month hospital stay, Dan lay down to take a nap in the hotel room we were staying in. He tossed and turned annoyed at my asking how he was doing and started repeating “I’m working”. The first time he said it I giggled.

The second time he said it I thought it odd. The third time he said it alarm set in. He stumbled to the bathroom and mimicked brushing his teeth in the mirror. I asked him what he was doing. He said, “I’m working”. I called the 24-hour transplant number for the first time (it was a number that someone from the liver transplant support group meeting had just given me a few days earlier). The doctor said to give him lactulose every 15 minutes until he pooped. When Dan spilled the first dose down his sweat suit top due to heavy shaking I dialed 911. Dan was not Dan.

He tried to stand up and stopped standing still as if he were a statue. He no longer talked. I pushed a chair behind him and physically buckled his knees underneath him to force him in to the chair. When the ambulance arrived they carried him out in that chair. I rode in the ambulance with him trying to explain his condition in minor shock myself. The young paramedics didn’t really know what to do. Within 30 minutes of arrival to the ER Dan was intubated and given lactulose by enema. He went in to his first coma. I am Dan’s caregiver. This is one incident of many harrowing hepatic encephalopathy experiences that I have been a part of. There is no way to prepare for a HE episode.