Advocacy, Toward better care, Who cares?

what happened to my mom?

Mom was “placed” in a long-term “care” facility on November 16, 2012. She was beautiful, playful and joyful on the day we kidnapped her and put her in ElderJail. She played catch with Big Bird in the kitchen and they sang You Are My Sunshine together:

I hope one day to either get over the guilt of tearing her out of her home, or to have it wiped from my memory forever. Maybe Alzheimer disease will do me that favour sometime in the future.

I slept with her on her first night in ElderJail and was with her every day for the next three weeks. On December 1, we sang carols together at the facility’s Christmas party.

Then, on December 6, I went to Calgary for six weeks; Big Bird took over where I left off, seeing Mom for a few hours on most days. But Big Bird broke wrist on New Year’s Eve. She never saw Mom again.

While I was away, they started giving Mom increased doses of Seroquel and Risperdal. When I spoke to her on the phone, her voice as thick, her words slurred, she was more confused than usual. I asked that they stop giving her the bumped-up doses; my requests were ignored. She diagnosed with a urinary tract infection on Christmas Day (I have no doubt it was from poor hygiene), and then, between Christmas and the new year, her leg started to swell. On January 11, she was taken by ambulance to the hospital, where she spent a week; she had thrombosis (a blood clot) in her left leg.

The first thing I did when I came back from Calgary on January 19, was to go to see her. It was early evening, she was lying in bed on top of the covers. She had her nightgown on over her trousers and her sweater on top. She looked sad, lost, and depressed. She responded in a whisper to my questions. She didn’t look at me.

I helped her to get up and to get undressed; I took pictures of her legs which had troughs in them from the elastic tops of her socks. There wasn’t a caregiver in sight.

Two days later, on January 21, 2013 (five years ago today), I visited her in the morning. She was listless, and quiet. Her eyes were cast downward, and again she didn’t look at me – not once. The woman who had been vibrant and energetic in her own kitchen two months earlier seemed completely hopeless and lost. She didn’t even want to sing Down in the Valley, her favourite song, the one we’d sung hundreds of times together. She looked as broken as my heart felt.

What happened to Mom in the six weeks I was gone had nothing to do with Alzheimer disease. It was the result of neglect, poor care and the inappropriate prescription of antipsychotics. Just like the case of Jean-Pierre Belley who was essentially drugged to death in a Quebec long-term care facility in December 2017.

I pray that some progress will have been made on the tenth anniversary of this day in 2023.

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