Making the invisible, visible: Spotlight on Caregivers

Caregivers are individuals who provide support to family members or loved ones who are ill, disabled, or elderly—and it’s almost always unpaid. They’re often the unsung heroes of our health care system, providing an invaluable service to those in need. April 4—National Caregiver Day—is an opportunity to recognize and appreciate the vital role they play in our society.

The story of Prateek and Swati Mohanty highlights their critical contributions. After eight years of marriage, Prateek suffered an acquired brain injury (ABI) in the summer of 2018. His ABI has left him with significant cognitive impairments, including partial blindness and loss of hearing, as well as problems with balance, smell, taste, and touch. At the time, the couple had a two-year-old daughter, and Swati was pregnant with their second child.

An ABI is an injury to the brain that is not hereditary, congenital, degenerative, or induced by birth trauma. The causes of ABI are broadly categorized as traumatic or non-traumatic. A non-traumatic ABI can be caused by illness and disease, infections and malignancies, stroke, tumour, vascular malformations, and cerebral infections.

The sudden nature of Prateek’s ABI—during a family trip to Vermont—is a stark reminder of how life can change in an instant. Prateek started experiencing severe headaches and vomiting, which quickly progressed to a high fever and delirium. The family took him to a small nearby hospital, where he was scanned right away. The medical team wasted no time in reaching out to New Hampshire’s Dartmouth Hitchcock Medical Center (DHMC), a leading hospital in the treatment of brain injuries.

The doctors at DHMC suspected meningitis and ventriculitis, which are inflammatory conditions that can affect the brain and spinal cord. Both are potentially life-threatening, and the mortality rate for Prateek’s condition at the time is over 90 percent.

Meningitis—a type of inflammation of the brain and spinal cord caused by bacterial or viral infections—may result in complications such as hearing loss, brain damage, and even death. Ventriculitis, another type of inflammation of the brain, is a rare but serious complication of meningitis that can cause fluid to build up in the brain’s ventricles, leading to increased pressure on the organ.

Prateek’s medical team performed multiple ventriculostomies to drain excess fluid, relieve pressure, and control symptoms. Prateek was sedated for over two and a half months to keep his brain activity to a minimum at Dartmouth’s ICU—followed by a nine-hour-long brain surgery. He was then transferred back home to a rehabilitation centre in Toronto, where he finally began to wake up. What he remembers first is holding someone’s hand: “I remember liking the touch so much and missing it when it was gone,” he tells us. “The need for this contact is what finally woke me up.”

The hand that stirred him back to life belonged to his wife, Swati.

Taking on the unexpected role of caregiver

For Swati—as well as their entire family—the experience was traumatic and life-changing. The suddenness of the injury, the uncertainty of the diagnosis, and the fear of losing a loved one all took their toll. But through it all, Swati has remained a constant source of support and care for Prateek and is now his primary caregiver.

“I did a lot of research,” shares Swati. “I was just trying to understand what was happening, what could be done, and what couldn’t be done. I’m not a medical professional, but I am a data scientist. So I did my best to understand. Finding strength from those around me helped. I had to take every day as it came.”

Swati had to learn quickly how to care for someone with complex cognitive impairments, including hearing loss, vision loss, cognitive fatigue, and the rare condition of retrograde amnesia—forgetting everything that happened before the injury. On top of that, she had to find out how to navigate the complex healthcare system and provide emotional support to both Prateek and their young daughters. For years, she was forced to fight for their insurance company to recognize that Prateek’s profound memory loss qualified as a disability—the insurer wanted him to go back to work.

The challenges of caring for someone with an ABI can be immense. Because ABIs happen so suddenly, they leave caregivers with little time to prepare. From almost one moment to the next, caregivers must adapt to the newfound needs of their loved ones, providing physical, emotional, and practical support.

Both Swati and Prateek note that the help they’ve received has been invaluable, from her parents who moved from India to help, to a community of friends, local doctors and therapists, peer support groups such as BIST and CHIRS, and the Canadian government. But for Swati, the journey has not been easy, and she’s had to make major life adjustments to provide Prateek with the support he’s needed, leaving little time for herself.

Prateek explains that “apart from taking care of myself—including timely intake of the right medicines, adequate diet and exercise to fight my diabetes, along with a daily struggle with fatigue, sleeplessness, and other shortcomings, as well as keeping in constant touch with my therapists and doctors—I don’t have that much to do. Swati, on the other hand, has so much more on her plate—like taking care of the kids, caring for me, attending to her work, her social circle, and tending to her many hobbies from dancing, to cooking, to painting, to travelling. She’s also in charge of the household, from driving, to groceries, to managing money,” Prateek says. “So if you see an improvement in someone with an invisible disability, please recognize that in them. And be sure to recognize the work of their caregivers.”

Engaging survivors to improve research

As part of our Making the Invisible Visible campaign, Brain Canada speaks to real Canadians living with brain injuries like Prateek and Swati, so we can tell their stories. Driven by our commitment to ensuring that the research we fund leads to real impact for Canadians living with brain conditions, Brain Canada is engaged in an extensive stakeholder consultation exercise led by Dr. Anneliese Poetz, Senior Program Manager, Knowledge Mobilization for Social Innovation at Brain Canada.

For people with a brain injury, there is no map. To achieve research impact, you need to put the time and effort into finding out what the actual problems and priorities are. We’re encouraging research outcomes that directly help people and can better improve practice and policy.

Dr. Poetz

Thanks to the generous support of the Galati Family and their gift of $850,000, Brain Canada is developing a pioneering project on brain injury to ground its funded research in the needs of diverse stakeholders.

“We are energized by this new approach,” says Dr. Viviane Poupon, President, and CEO of Brain Canada. “Engaging stakeholders in this way aligns with Brain Canada’s mission to advance a better understanding of the brain—and improve the lives of Canadians who are directly affected by brain disease or injury.”