Caring for a loved one with an illness, disability, or age-related challenges can be tough. Long hours and personal sacrifice are par for the job and exhaustion, both physical and emotional, can result if bearing the responsibility alone. Caregivers need care too.
Based on a 2018 survey by Statistics Canada, 41 per cent of caregivers spend one to three hours per week providing care and 21 per cent spend 20 or more hours per week. What’s really surprising is how young many of these caregivers start.
According to research done in 2019 by the University of Alberta, 27 per cent of youth between the ages of 15 and 19 are spending up to 21 hours a week to care for their loved ones. People like Amelia* have started caregiving in their youth.
With older siblings living out of province, Amelia fell into the role of caregiver to her brother as a teenager. Initially starting with bringing food to her brother or helping her mom out with chores, the role grew two-fold when her mother was diagnosed with cancer and Amelia took responsibility for caring of both family members.
“I’ve had a couple of instances of burnout when I didn’t have support from my siblings,” admits Amelia. “You feel lost when there’s no one there to help you and I was unsure if I would be able to handle caring for my family on my own.
“I wish there was a different way for caregivers to get help for our loved ones. Like a mobile triage that could be called upon to assess a person and support them with what they need so the caregiver isn’t bearing the burden alone.”
Making sacrifices in her own life to make sure her family was taken care of when no one else was available meant using vacation time to go to meetings or appointments, and paying for parking out of her own pocket for numerous hospital visits. She often felt guilty and selfish at times, doubting herself when she had to take a step back from care at times to accommodate her own life.
Over the years, Amelia learned from hospitals about community programs and supports in place to help provide care when she isn’t able to. “It feels good to know if something were to happen to me, they will be taken care of,” says Amelia. “I know they will.”
Amelia is thankful for the community and its programs that allow her brother to now live in his own place, and provide care when she isn’t able to. While life is more manageable today, there’s always a nagging fear in the back of her mind that things could go back to the way they were.
That’s why Amelia stepped up to be a United Way ambassador several years ago. She knows first-hand the importance of programs and initiatives supported by United Way that have helped her brother and, ultimately, herself.
Being a caregiver is tough. But the good news is that supports are available – such as Caregivers Alberta, an organization of caregivers for caregivers. If you or someone you know needs support with caregiving, or as a caregiver, 211’s information and referral specialists can connect you with thousands of community, government, and social services. The 211 website also lists programs for caregivers that can help develop plans, offer assistance, and more.
* Name has been changed to protect identity.