dear dementia, i hate you. your sinister ways of deception and demise are a killer. but her spirit is strong, and her doctors can't believe she's lived this long. she's been yanked away from us but the shell of her remains and i only have you to blame. you are absolutely the ugliest disease imaginable and my beautiful momma has been emptied by you. dementia, you fuck with my head more than anything else in this world. you bring bad days and hospice nurses to manage the constant pain with morphine and oxycontin and vacant faraway eyes and the illusion of smiles in a nonverbal patient with nurses left to read grimaces, the gnawing of hands, the furrowed brow. no emotions or real tears but instead silent cries and subtle recognitions that may or may not remain... based on superstition? the moon? maybe it's the tide or barometric pressure in a brain that's lost all cognitive impairment but always perks up and somehow remembers how to hold and eat an ice cream cone. sometimes these tiny truths are hard to swallow. my momma loves me like a rock. she rocks me like the rock of ages. forever and ever amen.
I will not be angry with god, the universe, the karmic wheel or the divine plan. I will always trust and believe in the power of love. my heart will not turn to a small bitter stone. and I will continue to say thank you, for the rest of my days. #dementia
oh mom. you're a baby bird and I curl up in the nest of your bed just to get close. your eyes only opened once these past few days. when I laughed, they fluttered open like it took all your strength but you raised them to the window, to the light, like a flower reaching for the sun. your pupils as tiny as a pinhole. where are you now? I wonder. what stirs your soul? if there's anything beautiful about dementia it's astral projection. her ability to come and go between the thin veil that separates our worlds. she's in Maine, she's in Colorado, she's in his bed in Virginia. she is, eternally, the thread that ties us.
I am helpless in the presence of her pain until a nurse brings more OxyContin. eyes squeezed shut all language is unspoken, gestures of discomfort nearly unbearable to witness. that was yesterday, on the tail end of a flu epidemic that had her facility on lock down. today is a world away and she arrived eyes bright. then later, the whispered hushed words only spoken to herself. she was trying to tell me something and I grasp at these silent prayers, her lips moving to no one but herself and the thin line she walks between heaven and earth. this is my reality, this is not my reality. this is my life, this is not my life.
"rejoice rejoice we have no choice but to carry on" the power of favorite songs from my youth come at me from all angles here. I push her in a wheelchair today just as I was pushed in a wheelchair yesterday through two different airports. this is end of life dementia. it's different this time, I can feel it as can everyone around her. life used to move at a snails pace and i didn't think it possible to move any slower, but this is life standing still. waiting. cocooned and withdrawn. this is her no longer eating more than two bites, no longer swallowing, no longer opening her eyes. like a majestic clock winding down until it stops ticking completely. she had a beautiful life, it wasn't easy, but she's the strongest woman I know and I like to think she taught me that strength in her own quiet way. "carry on, love is coming to us all." I love you mom. always and always. forever and ever, amen. ~