“I live with the sick and dying,” says 23-year-old Victoria Levack from her bedroom in the Arbourstone nursing home in Halifax.
She moved into the centre’s young adult wing several years ago to gain independence from her parents, while at the same time maintaining full-time care for her cerebral palsy.
But Levack never imagined how alone she would actually feel.
The wing is home to anyone who isn’t a senior, and Levack is only one of a handful of residents who are under 50.
"It’s not appropriate for someone who is 23 to be living with the sick and dying,” Levack said in a recent interview.
Her experience has led her to co-found Independence Now Nova Scotia-- an advocacy group that calls on the province to provide more suitable housing for young people with physical disabilities.
The group’s mission: improve the quality of life for young adults with disabilities through better housing options.
Levack describes how living with people who are three times her age has made it nearly impossible to form meaningful friendships and feel a sense of community with other residents. Since she has nothing in common with most of people in her wing, Levack says she spends most of her time alone in her room.
The age gap also impacts the centre’s recreational programming, she says.
“We play a lot of bingo.”
Co-founder Melanie Gaunt, 42, is faced with a similar situation at Ivany Place nursing home in Bedford, which she moved into four years ago when her multiple sclerosis began to worsen.
“The lady who lives six doors down from me turns 101 next month,” she says.
Both women believe that the emotional well-being of young adults who require institutional care for their disabilities will continue to suffer unless something changes.
Besides age-specific housing, they are also advocating for the province to place stricter guidelines on the staff hiring process to require a wider knowledge of different disabilities and illnesses, as well as better access to alternative therapies in all long-term care homes.
So far, the women say they have received positive feedback from Donna Dill of Continuing Care Evaluation with the Health Department and the Minister of Health and Wellness Leo Glavine— but say there are no immediate plans to move forward.
The stress that comes with living in a nursing home, surrounded by people who are at life's end, poses a serious health concern, Gaunt says.
A report by the Multiple Sclerosis Society of Canada on age appropriate housing for younger adults with the disease, says that MS is triggered by stress and sufferers can experience greater pain during emotional situations.
Gaunt remembers she felt excruciating pain in both her legs and back after two of her closest friends at the centre died — both of whom were in their late seventies.
“You want to get close to these people, know these people, but at the same time you’re putting yourself at risk.”
