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CJD and Me: When a Daughter Loses a Mother

Marielle Songy
8 min readFeb 19, 2020

Mom and me on my 5th birthday, 1987

Get through that first year. Get through the first birthday, the first Christmas, the first winter and the first anniversary of the thing. Once you get through that first year, the rest of the years aren’t so bad. It will all be okay.

At least that’s what I tell myself. Results may vary.

Being an only child is practice in preparing for death and knowing that one day you’ll be left alone. It sounds extreme, but I’ve been preparing for the death of my parents since I was a child. I’ve spent my life mentally bracing myself for the inevitable.

Dark? Certainly. But the fact always remained: I didn’t know when and I didn’t know how, but I knew that one day my parents would be gone and it would all be up to me…whatever it is. Like being the next in line for some royal throne. I used to fret over losing my parents. I used to wonder how one gets through such a thing. How do you survive something so life altering?

My mother’s illness started with a whimper in mid-2012. Mom had always been pretty quick on the draw- she knew the most obscure trivia, a skill that was exhibited time and again during games of Trivial Pursuit and Jeopardy. She always had a pithy remark or perfectly timed comment in casual conversation. She remembered everything. She even had various html codes memorized for different internet message boards that she liked to frequent. But then she began forgetting.

At first it was a struggle for the right word, but then it became bigger. She would forget where she left things, even though they were where she had always put them. She would forget conversations and names and just chalk it up to old age.

Deep down, I think that she knew something was wrong but she just brushed it aside and left it for another day. Deep down, I knew something was wrong too, but I was happy to join mom in sweeping it under the rug.

I first became alarmed when mom not only started forgetting things, but she became confused in other ways. A remote control would find its way into the refrigerator. She would forget that she had eaten or that she had showered. She forgot how to turn on the television. She forgot how to brush her teeth. She would tell me that my father had gone off to the store with my brother, who didn’t…

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Marielle Songy
Marielle Songy

Written by Marielle Songy

Marielle Songy is a writer and journalist living in New Orleans. More of her work can be found at www.mariellesongy.com

Responses (3)

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Hi Marielle,
Thanks for sharing your experience.
I lost my Mum three ago to Sporadic CJD and I feel the same hole in me that you describe. That won’t go away I’m sure, I miss her every day, but as you say, there must be a ‘but’.
I began a practice…

1

I truly feel your pain after reading your article for my girlfriend Silvana passed at age 57 it would be two years this May but it’s still very very fresh and hurtful, It all happen very quickly for her within weeks and then she was gone she also…

1

So sorry for your loss. You mom was adorable.