Advocacy, Death & Dying, Life & Living

the dystonia did us in: august 15, 2016

Six days earlier, Mom had told me she was comfortable with her chin to her chest and her eyes unable to shift their gaze from the floor. Three days earlier, she had said she was comfortable with her head tilted back, eyes permanently fixed on the ceiling. But on August 15, 2016, Mom was uncomfortable, and I was at a loss.

Her body was again pulled into the shape of a question mark by a condition called dystonia that was almost certainly a result of the prolonged and inappropriate use of  the antipsychotics risperidone and quetiapine, which she had been forced to take against her will and mine in dementia jail.

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Writing about this abuse enrages me, even though it’s been three years since her death. It was so cruel and unnecessary.

Besides the contortion of her neck and upper torso, the lower part of her left leg, her ankle and her foot were severely swollen. The wound on the same leg was as disgusting as it had been two days prior, and her broken right arm was still in a sling hidden beneath her shirt. I tried my best to help her, but there was nothing either of us could do, much to our mutual frustration:

The one thing I could do was to get her some juice and help her drink it, which I did. She sucked down two full cups through a straw. She must have been parched. I sang several songs to her, and she joined in for a line or two on each one, but clearly it was difficult. It’s challenging to breathe, let alone sing when your chin is on your chest and your windpipe is constricted:

At one point I asked Mom if she could spell the word “box.” B-O-X she said, pretty as you please. The irony of my choice of words comes back to haunt me now.

We spent the better part of the hour and half we were together that day in silence. The dystonia got the better of us.

“I’m going to put this blanket in your room Mom,” I said when I took her back up to the second floor and left her with one of the caregivers.

“Bye,” I called over my shoulder as I walked down the hall toward her room.

“Bye,” Mom said softly.

one last sing-along: august 13, 2016

the beginning of the end: july 26, 2016

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2 thoughts on “the dystonia did us in: august 15, 2016”

  1. this touched me and it is unforgivable how many elderly are abused in our country. They should be honored and live with dignity for all they have endured through life. This just breaks my heart.


    1. You’re right joyful, it IS unforgivable. And even worse, it doesn’t just happen in whatever country you live in, it happens worldwide 😦


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