What Do I Do Now?

What Do I Do Now? post page

By Online Dementia JournalSeptember 14th, 2021

What Do I Do Now?

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by Marie Brotnitsky,  

Winner of Coping with Dementia’s Essay Contest

Billy Colaci was a strong, willful Italian I fell in love with 20 years ago. Everyone loved Billy. Sometimes a comic, but very much a perfectionist. He loved life! He loved me unconditionally and with all his might, as I did him. He was at that true blue state – like a Sapphire, matched his eyes perfectly.

Billy started losing the confidence he once had. Frequently failing at his job, drinking more, and not being able to do the things he used to do. Billy remained rigid, determined, and very stubborn at times. He knew something was going on and couldn’t figure it out - we couldn’t figure it out. Billy always knew what to do, what to say. Although he strived to find the answer, it was more subtle like a dirty Diamond that needed a good, deep cleaning. However, he became deeply depressed and felt unworthy. The depression was real, the unworthiness was far from the truth.

It wasn’t until the Emerald State, the noticeable, un-denying change of personality and behavior. He struggled many times to find the right answer, the right word. He stuttered trying to figure out what do I do now? He became very curious and fumbled with his hands frequently. The diagnosis of dementia was heart-wrenching, to think my Billy at some point would not know what to do – Billy always knew what to do.

When Billy didn’t know the answer to day-to-day responsibilities, I assisted him the best I could in spite of his unpredictability. He became restless. On many occasions his moment in time was a surreal moment. He was an Amber, as he loved the attention, the music, the wind in his face. He loved his stuff. He was happy and I was dying inside. I learned as much as I could about this horrible affliction. I shared all I could with him, with a smile. Telling him often, Everything’s going to be alright.

It wasn’t until one day we were walking in the assisted living facility, Billy said to me as we approached the end of the hall, What do I do now? My heart broke as that was the most profound phrase, I heard him say. It was as if he was trying to find the answer of where to go, what to do. I realized my Billy had truly lost his way! I redirected him, hand-under-hand, and continued our walk together. He slipped into the Ruby side of this horrific disease fast. I had to be the answer for Billy now.

As my shiny Pearl lay there perfectly, and out of pain, I asked him, What do I do now, baby? Surprisingly Billy raised his right arm and slowly lowered it as if to answer me. My Billy was without a doubt behind those tired, blue eyes – unique like no other till his last breath. In memory of Billy, my shining gem, I will always look for the courage to answer, What do I do now?

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