Becoming a caregiver can happen suddenly

It is a surprising statistic that shows just how suddenly things can change. According to research by the Ontario Caregiver Organization (OCO), two-thirds of caregivers admitted they had no choice but to assume their role.

“If you think about how quickly a personal health care challenge can arrive, that is how quickly a caregiver can be required to step up,” said Amy Coupal. “Where there might be an injury, or a diagnosis, overnight people might find themselves in that caregiving role.”

Coupal is the CEO of the non-profit organization, which formed in 2018 to support Ontario’s four million caregivers. Its free website contains programs and services to help people navigate all steps on their caregiving journey, along with a 24-7 helpline and one-on-one and peer support resources.

“Caregiving is tricky to navigate because people might be dealing with complex conditions, changing conditions,” Coupal said. “One of the challenges of caregiving is that it is so unique to the individual who is the caregiver, as well as the patient or person they may be caring for, who may face physical or mental health challenges.

“We want to work with caregivers throughout the journey and provide the supports that they need,” she said. “We also have caregivers who have years, and sometimes decades, of experience in their caregiving role, and that is why connecting with a peer mentor can make a big difference. They know how to access care from within the system. And they also can also help to figure out how to access support from within the community.”

Coupal understands how different the roles of caregivers can be from personal experience. She has found herself fulfilling a caregiving role at three different points in her life. The first was when she was growing up and helped to care for her brother, who had cerebral palsy. “I, of course, did not call myself a caregiver then,” she said. “But I was very active as part of the family taking care of my brother.”

Later, she acted as a caregiver for her mother after she was diagnosed with cancer and underwent palliative care. “And that was very different because I was an adult then and it included a lot of things caregivers do around appointments and medication. It involved many different caregiving responsibilities during different phases of her journey.

“And now, I am a caregiver for my dad in his 80s, and we are working through the complexity of ageing and making sure he has all the supports he needs,” she said.

Coupal said her first piece of advice to someone who finds themselves in a caregiving position is to visit the OCO’s website and download its I am a Caregiver booklet. It is a toolkit designed to help “organize your thinking,” she said. It includes important information created by caregivers, for caregivers — like tip sheets, resource lists (including helplines) and self-care advice to ensure your own wellbeing.

“More than half of caregivers work. They may also have family and other commitments in their lives. Caregiving, for most of us, arrives as an additional responsibility,” Coupal said. “What we hear from caregivers is that they are happy to provide that care, but it can be overwhelming, and they might be struggling.”

Her second piece of advice, she said, is to ensure that you have a dialogue with the health care providers of the person you are supporting to ensure you know what your role is and the expectations around it.

“This is particularly important when we are talking about things like transitions, like going from a hospital stay to home or post-operative care, to make sure that you are clear about what your responsibilities are,” she said. “I would also look at the healthcare journey, to the best extent that you understand it, and what further information you might need to help that individual navigate the system.”

Coupal said the OCO is also focused on recognizing the importance of caregivers, not only to the person they are supporting, but as an integral part of the overall health care system. She said they provide a huge contribution, both individually and collectively. It is important to know, Coupal said, that caregivers provide three-quarters of all patient care.

“It is incredibly rewarding, and it can be incredibly challenging, and both can be true at the same time,” she said. “What we hear from caregivers, and I can say that it is also true for myself, is that caregiving can be lonely, it can feel isolating, and what I would want them to know is that they are not alone.

“There are people out there — like us — who are here to support. There are a lot of caregivers who have been doing this for months, years and decades who are there to provide support and are willing to give back to help make someone else’s journey easier. Reach out an connect and do not feel you need to do this alone.”