For Caregivers

Terri Rossi

Robert and Vito

Robert and Vito

Caregiver for Husband

My husband was diagnosed with End Stage Liver Failure caused by NASH about 7 years ago and on the transplant list for about 6 1/2 years now. My desperate education about ESLF started on different medical websites trying to answer all of my questions during the long hours of sleep that my husband was experiencing for which I looked for answers.

As I read the information, all of the symptoms, and all of the other terrible complications that could add to his issues, I suddenly realized he was already experiencing the majority of them. All my questions and fears in the middle of the night being answered from the Internet, but having no one to share the fear with.

Knowing I could never show this fear to the person I was closest too, my wonderful husband. HE touched our lives in the hospital as my husband fought, yelling in frustration, because I couldn’t guess what he needed as he garbled in a strange bit of words. Watching the struggle of the strong, wonderful man I loved being taught again how to feed him and now to walk using a walker as the HE stole his memory on how to do simple tasks.

HE left me alone arguing with caseworkers who didn’t understand HE and only wanted me to put him in a nursing home. HE left me alone fighting to keep the husband I loved with me, fighting to keep our lives intact. HE touched us at home as he decided in the middle of the night that he needed to go for a walk as I struggled trying to calm him down, the times he would jump out of the car wanting to walk home, how our lives changed drastically at any given moment.

HE hasn’t won yet. We have learned how to keep this and other issues at bay. Although we mourn the life we had, we are joyous to still be here, and together fighting the fight together until it is our time for the gift of life. We thank God for every day, for every moment and have learned the simple joys of just being together.