her dementia, my grief

“but there’s a story behind everything. how a picture got on a wall. how a scar got on your face. sometimes the stories are simple, and sometimes they are hard and heartbreaking. but behind all your stories is always your mother’s story, because hers is where yours begins.” -mitch albom

I stop and start. I begin and end. I wonder if this is my story to tell or if it is hers, forever untold and only to remain locked in her mind.

I can’t help but write. and I know she’ll forgive me, because this is how I process. (she used to find me in my room, hunched over my desk, with pen in hand.) not much has changed, except now I occasionally type at a desk, or write in the car, or lay in the dark on my bed and type notes with my thumbs onto the tiny keypad of my glowing smartphone… (some device that wasn’t even a dream back when I told her I wanted to be a writer at age 15.)

perhaps this is my father’s story- one he is unable to speak. or maybe this story belongs to my brothers. or the three of us combined. i like to think her story belongs to all of us now, at a place in time where we all intersect. we each own a piece of it in our own individual way. just as we each had a different and separate relationship with her. just as we each individually miss her and grieve her and struggle with loss.

I’ve analyzed and over analyzed this. I’ve written pages and pages on dementia. on grief. on motherloss. sometimes I fear that the well has run dry, that there’s nothing left to feel… because it’s been such a long road and too many years. I hear that this is normal. especially with dementia. but here we are lost somewhere in year five of her terminal illness. it’s more of the same. and yet so very different from where we once started.

“thank god we’re not there,” my brothers remarked when we first moved my mother into her home. I agreed, following their line of sight to the place they were referring to. the “final stage” room. the place where all dementia patients eventually end up, the place they come to die. curled into a wheelchair, asleep, parked infront of the tv that plays to a vacant audience. when my mother first moved in, she was placed according to cognitive ability and lived with her peers. she walked, she talked, she was a demented social butterfly. “thank god we’re not there,” they said.

as I sat with her, I thought to myself, here we are. we are in this place where everyone ends up. the place no one wants to be. and I just kinda shook my head at how absolutely fucked up life is.

we sit. I put her hand in mine. on a good day she stares into space. on a bad day she sleeps or gnaws her hand (the only clue of a facial grimace her nurses see that she might be in pain).

I think of holding a newborn, that time in life when soul is elsewhere while body is here. that time in life when beings straddle heaven and earth. angel babies. that time is now. my mother is an angel, she sleeps curled in her wheelchair with the remnants of lunch remaining on her lip.

the words of the song cross my lips and fill the space between us. “you used to sing this to me. and I sing it to river. and now I sing it to you,” I say to her. I love you, a bushel and a peck… “you used to sing this to me,” I say. her distant eyes meet mine, and although I have not heard my mother’s voice speak in years I see her lips moving, trying to form the words. and a whisper… “sing” she whispers, barely audible. you used to sing this to me, I say, choking back tears.