The Crisis for Caregivers

When Susan Marsh’s 15-year-old daughter, Sydney, was in a car accident, it changed the life of their entire family.

In the hospital, Marsh saw her mild-mannered, introverted daughter become aggressive, combative, and physical with the nurses.

In the emergency room, Sydney initially was diagnosed with a mild concussion, a dramatic underestimation of the real damage. For the first few months, Sydney was unable to go to school, and slept nearly all the time – even falling asleep in the middle of eating. When she did start going to school, she needed extra support, including a learning strategist, speech pathologists, and a neurophysiologist, just to name a few.

Over the next few years, Marsh and her family witnessed Sydney, who is Métis with ancestral ties to Kapawe’no First Nation, Treaty 8, transform from a diligent and collaborative student to someone they hardly recognized.

Sydney lost her close friends and began hanging out with people who introduced her to high-risk behaviour. Sydney became increasingly impulsive and started self-medicating in unhealthy ways. Her mental health deteriorated, leading to erratic and volatile behaviour and leaving her deeply suicidal.

Eventually, she saw a neuropsychologist and was diagnosed with a catastrophic brain impairment. Finally getting the proper diagnosis helped Marsh and her family discover better resources and support for her daughter – and win a legal case to help pay for her treatment. But the results of the accident have permanently altered the lives of Susan and her husband, as well as their two other children.

Sydney, now 28, still deals with impulse control, mood swings, difficulty planning, low self-confidence, and cognitive fatigue. Because of the extent of her injury while her brain was in a critical period of development, recovery for Sydney is a complicated, ongoing process. Against all odds and with the unrelenting support of her mother, Sydney – who at one point considered dropping out of high school – earned her bachelor’s degree in psychology with a minor in neuroscience and mental health. She is currently finishing her diploma in Mental Health and Addictions, and is on a work placement with accommodations.

Susan contrasts the system of support for Sydney to young people with physical disabilities. “If she had [an extreme physical impairment], we would get 24-hour care,” she says.

“It felt like she wasn’t ‘disabled enough,’ and in many people’s eyes, she looked fine,”

Susan describes, even though Sydney’s injury has required Susan and her husband to be on-call around the clock for more than a decade.

For Susan and other parents of kids with brain injuries, processing the dramatic changes in their children can be exhausting and devastating. “It’s a mental health crisis for the caregivers too. There’s nobody to support us,” she says.