oh, dementia

used to be dementia was this dark beast in the corner of the room. it haunted me at night during my weakest moments. used to be that dementia was the bully, the asshole that took things that were not his. dementia took my mother away. dementia was a jerk. he was vicious and cruel with fast wits to remind me that nothing ever was in my control.

those were the early days.

we’ve come a long way from there. sadly. those early days were excruciating and painful with all the newness and immediate sense of loss. those days were overwhelming with every moment being lost before a new one was formed. those early days just before and just after diagnosis in 2009, my mother disappeared so quickly from us that i questioned if she was ever mine at all. there is nothing more panicky than that single thought: she was never mine.

what do i have? what do i hold? what is mine? all i carry are her stories. my stories. and the place where our stories intersect. for a long time that simply wasn’t enough for me. i wanted more. it wasn’t fair. i was a stomping toddler crying for her mother. i was lost in the mall needing her hand, her embrace. i needed her reminder that it will all be ok, i’ve got you now. now you are safe. what i wanted was mother love. i’ve come to realize that what i have is stories. that’s all. and that is plenty, because it’s all i’ll ever have.

it’s strange to say this now, but dementia has a familiar face. he is not a long lost friend by any means, but he holds familiarity in a crowd. he unsettles my nerves, yes, and is never a comfort. i certainly wouldn’t call dementia over to watch the kids while i ran to the store, i couldn’t ever let him spend the night and be left unattended while we sleep. dementia is wicked and does things his own way. he’s not someone to trust, that dementia. but he’s been around long enough that he is part of the family, sad as that makes me.

these days i find myself more relaxed around dementia. i feel the deep inhale and the equally as deep exhale, the blinking of tired eyes, the stretching of sore muscles, and the shaking of ones head in disbelief as i utter “oh, dementia” as if he himself has aged back to childhood and likes to cause mischief like dragging toilet paper throughout the house or coloring with markers on kitchen walls. oh, dementia. i bend to pick up his messes. he is more a nuisance now, than a killer. more of a pebble in my shoe than a silent stalker creeping in your unlocked windows at night.

oh, dementia.

the strange thing, the sucky thing, the thing that makes me feel far from the outside reality of mainstream life? it’s dementia.

dementia forms a tight circle. not many people fit into that circle. for a time, only my immediate family could fit in it. it was a room the size of a closet that only us and two of my mom’s best friends could enter. those were the only people who had met dementia face to face, smelled his breath, shook his hand, grinding your teeth all the while at the discomfort of it all.

leaving the tight circle, and going back out to the reality of the outside world… that is the headfuck.

leaving dementia and going to get groceries? mind boggling. saying bye to dementia and going to pick up your child from school? bizarro world. because within that circle, mean spirited as dementia is, it is normal. it’s normal for me to feed my mom. for her to open her mouth like a baby bird and for me to spoon her meal for her, wiping up her mouth and chin along the way. it’s normal that she is mute. it’s normal that she is vacant. it’s normal that i speak and no one answers. the humming in normal. the blinking. the blank stares. the gnawing of fingers. it’s all normal.

see what i mean?

no one can live in that circle of dementia forever. having a wicked soul such as dementia in your family tricks the brain to think that it’s normal. when that sort of normal couldn’t be more further from the truth. what is normal is my healthy mother-in-law packing lunches and wearing capris. what is normal is conversation and motherly advice and swear words and laughter and concern. what is normal is living and breathing and functioning, hearts beating, palms sweating, new memories being formed as bridges are crossed.

i don’t know what i’m saying other than i carry all of these thoughts inside of me. and sometimes, dementia makes me feel like a stranger from another planet. what is comforting is hearing other peoples stories. hearing that i’m not alone. that we are all in these bizarro worlds with one foot here and one foot gone. it is heartbreaking, yes, to hear that so many people have dementia in their family. yet at the same time it is a comfort to me, and a constant reminder of the utter strength of the human spirit.

because we are all carrying on. even with dementia trying to knock us down.

since my mother was diagnosed with Picks Disease in 2009 i really struggled with photographing her illness. it was hard for me to see her, this woman who sometimes only rarely resembled the loving mother who raised me. my camera sat empty, pushed aside.  a good friend of mine, a documentary photographer, told me i had to photograph her. it was my duty. and it would be something i would look back on later and be thankful for. she reminded me of this project, and she reminded me of the importance of photography… the value of photography.  and so, ever so slowly, i began picking up my camera when i felt strong enough to do so.

i spent last weekend with my mother at her nursing home in virginia. i took pictures of her. of us together. i took them for my own heart. for my goodbye. for my need to see and accept this final stage of terminal illness. i was hesitant to share the images of her, but i did. i shared an image on instagram, even though i felt incredibly vulnerable doing so. this is my mother, this is not my mother. i felt the need to explain. then, fuck it. i don’t have to explain anything. this is dementia. this is grief.


and really, the best gift is not the image (which, hard as it is for me to see, i know i will cherish one day) the best gift was the overwhelming response of love and words of support from friends near and far. the best gift was the stories shared, the reminders of similar circles also learning how to deal with the bully that is dementia.

so, thank you. thank you, dementia for being such an asshole. thank you, dementia, for being the jerk that inevitably rallies strong spirits around you to put you in your place. thank you, friends, for your outpouring of love in a time when i felt nothing but emptiness.