The moment came and I realized; as much as my Mom could frustrate me, she always had an ear. I’m finally “on my own.”

Mom finished out her birthday in confusion and fear. The snakes poured out of a woman’s belly button onto the floor. A man peered out from the secretary desk, causing her to cry out “Go away” like some C3-PO shooing mynocs from the window. That guy at least turned out to be more reflection than solid flesh. And Mom had an overwhelming sense our older brother waited for her just outside of view.

Mike passed in 2004, but lately would sit in the chair with her stuffed animals and smile at her. One day he stood and inched his way toward the door as if beckoning her to follow. Each day he moved farther away until he was out of sight, but not out of mind. Mom became tormented by the belief he had a son and wanted her to meet him. She surprised us all by desperately trying to find him in the hall. She’d struggle to stand, slipping in the process. It filled us with dread because balance never came easy to her. Fake hips and knees bent her gait till she teetered between comical slapstick to dangerous falls. The last week of consciousness gave her a renewed sense of strength and control that caused me and my brother to look at each other with an unmistakable look of “oh, shit!”. But what do you do when your parent is wailing and insisting her deceased son is mere feet away, smiling in wait for her to meet his undisclosed child?

But things change and four days after her birthday Mom was found slumped in her chair, nearly comatose. Hospice pulled her into a sitting position and called us. The next day we met with the assisted living facility who told us the time had come to hire sitters. Mom needed to stay in bed or else she could not stay at the facility. Together we decided Mom was fine for that day and night and we’d find someone by Saturday. With some names in hand we left the office and checked on Mom. Her face exploded in child-like wonder when she saw me, recognizing me as someone she knew but didn’t expect to see. It’s entirely possible she believed it was the 1950s and she lived in the orphanage again. And once satisfied she was safe, we left for the day. Caregivers need time off, even if we feel guilty over taking the time.

The next morning was grocery shopping day for me. As I wandered the aisles, I tried to clear my head and enjoy the few hours of simple tasks and familiar routines. I knew the day ahead promised many phone calls and juggling of funds, but for that moment I became engrossed in the cheese selection on the specialty aisle.

Then my phone rang.

Mom fell from her bed during the night, landing on her face and cutting open her forehead. She lay there for many hours due to a sign on her door that said “Do Not Disturb.” Over the previous weeks Mom began crying out in fear when attendants checked on her during the night. Thinking evil-doers were here to attack her, she’d scream in fear “Get Out!”

A screaming resident isn’t good for business nor for long-term housing options. The sign was a compromise for the many different night staff. This led to Mom laying in her own blood for hours until it dried all over her face, neck, and shirt.

I stood there by the cheese cooler, the phone at my cheek while a voice asked to which hospital she should send the ambulance. Memories flooded back of the many times Dad fell, pulled his catheter out, or damaged himself by tearing at his skin. She ended up going to the same hospital we sent our father all those years ago, the one that tied him to his chair. The irony of the situation and the dark humor gave way to the realization we’d reached the final stage, the one plagued by hospital visits and crying out in pain and blood, lots of blood.

As we paced the hallways at the hospital, waiting for the x-rays and morphine to start working, I called sitters and arranged for 24×7 care. We would work from the lobby and the sitter would protect her overnight. The sitter wasn’t perfect and in some cases seemed intent on healing Mom through prayer, but it was enough. We saw Mom throughout the day, kept our jobs, and had more time for comfort and peaceful reflections.

And as usually happens with Lewy Body patients, she rallied and for 72 hours she spoke, ate the food brought to her, and reacted to our presence. Crystal returned and spent two days watching over her, praying and singing hymns. As Mom lapsed into a semi conscious state where her eyes opened periodically but only the barest of sounds escaped, her final words were a prayer she whispered in unison with her niece.

Mom remained that way for another week. She might cry out suddenly, convulsing every fifteen minutes as if in pain, and would fall silent. Unlike Dad, her death rattle sounded more like labored breathing, making it hard to gauge the timing. We sat in the lobby taking conference calls or meeting with the Hospice workers to discuss final wishes. And my son got the chance to see her one last time. The words he spoke made me proud and gave me chills at how much he’d grown. This was his first real brush with someone close to passing. He said all the right things.

And on July 6th, at around 9 PM at night, Mom passed away. We weren’t there. I’d been at the cancer center all day and was going to get some rest. Snapper was there during the day. He made sure Mom was comfortable. Told her he loved her and left at sundown.

She took her leave with only the sitter to witness it. I don’t know if I’ll ever get over that either. I was 0 for 2 in the dying part, which pretty much guarantees me to follow suit and make my exit solo. I’ve held all my dogs as they died, but always absent when my parent were set to go. I wanted to be there if only to comfort her one last time. Everyone deserves comfort at the end.

So we came back to the center and sat with her until Hospice came and declared her officially deceased. We accepted condolences from everyone who passed by. What do you do?

And just like that it was over.