Elizabeth Eckert has cared for her son Anakin for his entire life. Born premature at 22 weeks, Anakin is legally blind, has hydrocephalus (a build-up of brain fluid) and epilepsy, and is neurodivergent.
Now 22, he’s been through countless surgeries and lives full-time with Elizabeth—but he’s anything but inactive. He has a full social life, plays guitar and composes, writes stories, attends Okanagan College, has two jobs, and volunteers with Make-A-Wish Foundation and the 501st Legion.
Anakin can’t be left alone for more than an hour because of his multiple health issues, and Elizabeth attends many of his activities with him. “I’m a proud caregiver, and he’s a proud caregivee,” Elizabeth laughs, a single mother of four from Vernon.
Even though as a mom she’s Anakin’s natural caregiver, Elizabeth admits she sometimes needs to separate the roles, which can be hard to do. “Sometimes I have to take off the mom hat. It’s been a learning curve. ‘Caregiver’ can be a very challenging definition and accepting that term and identifying as a caregiver can bring up a lot of things,” says Elizabeth. “But we have so much fun together, not just around the care aspect. It’s just mom and kid time.”
As Anakin has grown older, Elizabeth has learned to navigate the health system, and has gotten very comfortable with paperwork. Anakin receives 25 hours a week in support from care aides, which allows Elizabeth to work part-time for the literacy society, and as a dog trainer.
When asked if she receives her own respite care, Elizabeth says not exactly. “I kind of need a caregiver myself,” she jokes. “I use some support we receive through Community Living BC to get Anakin to his evening activities,” she explains, adding that she has Multiple Sclerosis and is “done” at the end of the day as her leg doesn’t function as well for driving. Having a progressive and complex illness herself, Elizabeth can attest to how challenging it is to be a caregiver when dealing with personal health issues.
But Elizabeth is grateful. “You know, life is good. Caregiving doesn’t mean it’s the end of your life,” she says, smiling. “I’m not saying it’s not hard, but it can be wonderful, and absolutely beautiful. It just becomes part of your family of identities that you have. You’re in a position every day to provide care for someone you love.”
Anakin and Elizabeth are also busy setting up a social enterprise, a café that will serve as an art and cultural centre for people with diverse abilities. “Anakin is a remarkable young man. He’s so determined, and has this beautiful, passionate, charismatic presence,” shares Elizabeth. “And I’m in this amazing position to bring wonderful things to a person who wouldn’t have these opportunities otherwise.”
This month, Elizabeth will be participating on a panel at an event for caregivers in Vernon, hoping to share her messages with other caregivers.
“If you’re feeling stressed or overwhelmed—you forgot to take the garbage out or you have a late fee—you might need somebody to support you or to talk to,” she advises. “It’s important to set aside your caregiver hat. Don’t shy away from that. Reach out for what you need.
“Life isn’t going to be efficient. My vacuum has been sitting right over there for three days saying ‘hello’ to me,” she smiles. “But right now, I’m listening to Anakin play guitar upstairs.
“Sometimes, you don’t do the vacuuming. You listen to the song.”
Chantelle Fairbrother is executive director and founder of Vernon-based John Rudy Health Resource Centre Association, a not-for-profit that helps people find and understand health services and information.
“More than 80 per cent of the people we see in our office are caregivers. People come in with one question and leave with answers to 10,” shares Chantelle. “They just want to help their loved one but feel lost or ill-equipped. It’s like being asked to sail a boat across the ocean without sailing skills. But it’s okay—you’re not expected to know these skills until you’re in the position you need them.”
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Genevieve Andrews, manager, Home Support Services in Vernon, adds this: “Taking time for yourself and being aware of the impact caregiving has on your own health and wellness, are key.” She advises caregivers find time to focus on themselves, and seek resources to do so through caregiver support groups, home and community services, and other family members, neighbours and friends. “It’s so important to ‘put on your own oxygen mask first,’” she adds.
As a caregiver, you can access resources to help you take care of your loved one and yourself.
More than eight million people across Canada provide care to a family member. In May, we honour the dedication of our caregivers, and raise awareness about supports and resources.
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