Jeanne’s 99-year-old mom, who has dementia, lives in a retirement home in Brampton, about 2 hours away from where Jeanne lives. Although Jeanne doesn’t provide direct aid such as managing medications and assisting with bathing and dressing, she is responsible for coordinating much of her mother’s care, which comes with its own set of challenges.

As the main point of contact with her mother’s retirement home and her mom’s Power of Attorney, Jeanne continually has to make decisions for her mother and advocate on her behalf. “I constantly worry about doing what’s best for her,” she says. “I have never felt less confident in a job.”

Jeanne arranges all the doctors’ appointments, coordinates any additional care needed, liaises with various community health supports, and handles all the paperwork and referrals for things like palliative care. Jeanne is also responsible for communicating all aspects of her mother’s care with the rest of her family.

One of Jeanne’s biggest challenges is being the communications hub between all the players involved in her mother’s care. “Most elements are not coordinated, and I need to make all the connections and make sure that steps are proceeding,” she explains.

Not living in the same city as her mom adds a layer of difficulty to Jeanne’s caregiving role, and the COVID-19 pandemic has made it worse. “Everything has to be done remotely,” says Jeanne. “I haven’t been able to visit in person, and my mom doesn’t use any technology, so we can’t visit virtually,” she adds. Plus, there’s the constant worry of outbreaks.

In investigating what resources were available to support caregivers like her, Jeanne came across the Ontario Caregiver Organization (OCO). “I am the kind of person who collects information, and I wanted to educate myself on options for my mother’s care,” says Jeanne. So she signed up for the OCO’s Scale program, which consists of online webinars by highly trained professionals. Jeanne found great information on navigating the health system, strategies for reducing stress, plus helpful advice from other caregivers.

“It is good to open up to others, even in a virtual mode, and not to feel guilty. I’ve learned that you don’t have to be the perfect caregiver – just try to do your best,” she says. 

Jeanne has become very involved in the caregiving community. She regularly participates in OCO panels and working groups, providing input on its services like the OCO helpline and website.

She’s also working as a volunteer with Age-Friendly London to deliver a local online caregiver education course based on the Provincial Geriatrics Leadership Ontario (PGLO) Caregiving Strategies program with the support of the Ontario Government and OCO.

Jeanne’s top 4 tips for caregivers:

1. It’s OK to take time for yourself and focus on self-care. It’s important to look after your own emotional and psychological well-being. 
2. Get educated – find out what support and resources are available. 
3. Connect with other caregivers – empathy and compassion can be healing.
4. Ask for help!