Mum, here’s our story published in the Vancouver Sun today. I am grateful for our journey together. Who would have imagined it would have lead me to passion & my purpose Happy Mothers’ Day. My first one ever without you. The following is preview of the article that came out today in The Vancouver Sun.
Trish Neufeld and her mother didn’t always get along. They were opposites. Neufeld was an award-winning documentary filmmaker. Her mom, Patricia Graham, was a businesswoman. “She was for community, people, public service. I was for art, making movies and having fun.”
So they argued. They also talked and texted every day, sharing every challenge, triumph and heartbreak. They were best friends. The day her mother stopped fighting, Neufeld knew something was very wrong.
“I would pick a normal fight between us, and she wouldn’t fight back, she wouldn’t play her role.”
Neufeld would soon have the answer: A shattering diagnosis of frontotemporal dementia. The decline would be rapid and inexorable. As her mother sat next to her, the specialist they had waited six months to see told Neufeld bluntly that for the next 18 months her mother would still be able to dress and toilet herself. By 24 months, she would begin having trouble turning on the taps, using utensils and dressing. Within 48 months she would be incontinent, unable to care for herself, and bedridden. Her organs would fail and she would die.
As they left the office, her mother threaded her arm through her daughter’s and said, “I think that went really well. What do you think?”
Loss of insight, coupled with a lack of awareness about the disease is part of the cognitive puzzle associated with FTD, a form of dementia that is characterized by changes in behaviour and personality. The illness most often strikes in the 50s and 60s, progresses rapidly and has a strong hereditary pattern.
Graham’s own mother had died mysteriously when she was only 37, something Graham had puzzled over her whole life.
Neufeld first noticed odd behaviour in her mother on Christmas Day in 2007. Graham — who had been enthusiastically building a china set for her only daughter — gave Neufeld a place setting in the wrong pattern.
She drove Neufeld’s car for a long distance with the emergency brake on. For one of their regular weeknight dinners her mother called to say she’d bring over steak and salad. “She showed up with a $2.19 package of shredded beef and bagged salad. Normally she would have brought tenderloin, avocado, tomatoes.”
It was only in retrospect, after Graham’s diagnosis at the age of 64, that Trish and her mother’s friends would see what had seemed like small eccentricities through a new lens.
“I never for a minute thought it was dementia,” says Neufeld.
On diagnosis Neufeld, 34 at the time, was urged by the doctor to get power of attorney, arrange for homecare, sell her mother’s business. She was warned that FTD brings about changes in behaviour and a lack of judgment that can often be embarrassing: impulsive acts, obsessions with specific foods, and hypersexual behaviour were to be expected.
In shock, Neufeld tried to carry on with her life. She went to work, took care of her mother’s affairs, and grieved. “I came home every night, lay on the kitchen floor and cried.”
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