Remembering Annie: the chatterbox, avid dancer, and dear sister from Fort Smith, N.W.T.
Sister shares experience of witnessing a loved one with Down syndrome develop Alzheimer's disease
Mary Anne Hamilton wasn't supposed to live past her first month.
When she was born, she was the size of a pound of butter, fitting comfortably in the palms of her father's hands.
The doctors told the family that she wouldn't crawl, walk, nor talk.
"They wanted her institutionalized," said Patti-Kay Hamilton, Mary Anne's older sister.
But Mary Anne's mother refused.
"She was an Irish mom and she wasn't going to let anyone tell her how to raise her children," said Patti-Kay.
So Annie — as they started calling her — grew up with the rest of the family.
"She just became a part of our little tribe," said Patti-Kay. "I expected her to climb the trees, and swim to the dock, and do all the things the rest of us did. And she did, and more."
Annie was born with Down syndrome.
"'It doesn't matter that she doesn't remember me. I remember her'." -Patti-Kay Hamilton
Today, she is 56 years old, and was diagnosed with Alzheimer's disease just over a year ago. Scientists believe people with Down syndrome have an increased risk of many health issues, including dementia, due to an extra chromosome.
"I love you. Do I get a kiss today? Mwah," cooed Patti-Kay, singing, kissing and caressing her little sister's face. "You're really sleepy, because you usually give me a kiss."
As they sat next to each other at the Northern Lights Special Care Home in Fort Smith, N.W.T., Patti-Kay shared Annie's story in hopes that there will be more awareness on the little-known connection between Down syndrome and Alzheimer's.
Annie was "a spark" and a "chatterbox," said Patti-Kay.
"You could not keep her quiet. I used to have to ask for five minute time-outs. She wouldn't last a minute."
She was a social butterfly: "She probably knew more people in Fort Smith than I did," said Patti-Kay.
Annie loved to dance. She loved music, and even had stints as a performer with a theatre company when she was younger. It's fitting that her two favourite movies are romantic comedies and musicals: Mamma Mia and Hairspray.
Her love for melodies manifested at a Jerry Cans concert at Yellowknife's Folk on the Rocks one year.
"I turned my head to talk to somebody, turned around, she's on stage playing air guitar beside the band," said Patti-Kay. "It took myself and a friend to drag her off."
Annie's also an artist. "One time, she painted this huge ice cream cone because she's lactose intolerant," said Patti-Kay.
This painting was sold to then-Ontario premier Bob Rae at an auction.
'A banshee shriek from hell'
And then came the night when everything changed, just a few days before Christmas in 2015.
"It was like the dark-night-of-the-soul kind of night," recalled Patti-Kay.
The sisters held a solstice gathering at the house with loved ones. At the party, Annie was still walking, still talking, and loved her independence.
It was after bedtime when Patti-Kay was awoken by shrieks.
"It was a scream I'd never heard. The closest I could compare it to was from the movie The Exorcist," said Patti-Kay. "There would be heads spinning next. It was a banshee shriek from hell, and it was my name, over and over."
Patti-Kay later found out it was Annie's first of many "psychotic episodes," as her doctor called them. Very quickly after that night, Annie began to to lose her motor skills and would yell and hit at her friends and family. Many people in Annie's life found it too hard, and slowly backed away.
"It was fast, fierce and vicious."
She became "all of a sudden, a person I didn't recognize," said Patti-Kay, who became scared and exhausted trying to figure out what was going on with Annie.
"I'd walk outside, and sometimes I'd just slump against the car and sob and sob and sob," she said.
"It was really lonely."
'I'll miss her'
"She doesn't remember any of us anymore," said Patti-Kay.
But every so often, there will be a little glimmer, she says.
"Her eyes just get big and she kind of looks at you. For a flash of a second, she sees you."
Annie — who loved to tell stories once upon a time — lost her words.
But every so often, she'll whisper something into Patti-Kay's ears.
"If I put my head close sometimes, she'll say 'I love you' in this hoarse voice of somebody who's yelled all night."
"We have no idea what her life span is," said Patti-Kay. "I'll miss her."
Patti-Kay said she wasn't prepared for her sister's sudden transformation. She hopes Annie's story will help prepare others who may witness a loved one with Down syndrome develop Alzheimer's disease.
Holding onto Annie, Patti-Kay shared stories from Annie's love for adventure to quirky tales of walking into Annie's apartment and seeing her gleefully absorbed in a game of bingo with a friend, cowboy hats atop their heads.
"It doesn't matter that she doesn't remember me. I remember her."