For the past decade, [Victoria] Levack has lived, reluctantly, at the Arborstone Enhanced Care facility in Halifax. She doesn’t dream of living in a castle; she just wants a bachelorette apartment where she can cook her own meals and choose recreational activities beyond bingo games with seniors.
Spending her 20s in a long-term care facility was never Levack’s plan. She first moved to Halifax for university, looking for social and career opportunities that weren’t available to her in her small town of Berwick, N.S. But she got sick after she couldn’t receive adequate care while living in a university residence. Levack has spastic quadriplegic cerebral palsy. She needs help with dressing and personal hygiene. She drives her electric wheelchair with her right pointer finger and uses her left hand for everything else.
Levack returned to her parents’ home in Berwick, but she couldn’t find proper care there, either. As an adult, she couldn’t access supports she’d received during elementary and high school. She had some home care, but the workers wouldn’t always come when scheduled. Caregiving duties fell to her stepmother, who Levack says was often scared to leave the house for fear that her daughter wouldn’t have support. “The uncertainty of not knowing whether I was going to get help that day was terrifying,” Levack recalls.
One option she looked into was a provincial housing program for adults with disabilities. Three or four people share a home, and support staff come in on shifts or live in the building as well. Levack says she was told she didn’t qualify because her needs were too high. She moved to Arborstone instead. “I didn’t get to make a choice,” she says.
“I hope you’ll still laugh at my jokes when I have dementia,” I said to my husband Ryan on an evening walk not long after my thirty-fourth birthday....