'No end in sight': The lifetime commitment of caring for a loved one with a brain injury

It's a seemingly simple goal, but for Jodi and Cheryl Graham,it's been nearly 14 years in the making.

This summer, Jodi, 38, hopes to walk one of her friends down the aisle at his wedding. In some ways, it will be the culmination of countless hours spent with physiotherapists, speech pathologists and eye specialistsafter a 2006 car crash left her in a deep coma with a traumatic brain injury.

In another way, it's no culmination at all: once the big day's over, Jodi will still need around-the-clock care, mostly provided by her mother, Cheryl, and their close-knit network of health-care professionals, friends and family.

It's a reality that hundreds of caregivers face in Ontario each day and forJodi's parents, it's complicated by the knowledge thattheir daughter will likely outlive them.

"There's no end in sight [to the help Jodi needs],which is hard. It's a nightmare," said Cheryl, 61.

"It's hard to sit here and say, 'This is going to be the rest of my life, trying to help Jodi get her life back. And there are no other options."

The night of the crash

It was a Thursday night in 2006 whentheir lives wereirrevocably altered.

An avid athlete, Jodi was on her way to soccer practice in south Ottawa when the vehicle she was riding in was T-boned by an SUV. The SUVslammed into thepassenger door, right where Jodi was sitting, with enough force to push it in by more than half a metre.

It took 25 minutes for firefighters to free Jodi, then 24 years old. She had glass shards in her face and back, a broken collarboneand, most distressing,severe brain bleeding.

The crash was so violent, Cheryl said, that her daughter essentially suffered theadult version of "shaken baby syndrome."It left her in a vegetative state, and for a timeno one knew if she'd ever emerge.

Slow recovery

Eight weeks after the crash, Jodi came home. Her recovery wasslow: a foot twitch here, a hand movementthere. For five years, she needed a feeding tube to eat.

"I can remember the first few years I don't think Cheryl ever slept the full night because she was always on the alert for a noise from Jodi's room," said Wendy Byrne, a longtime family friend.

The brain injury damaged Jodi's eyesight and left her mostly unable to speak, so the family communicated with her by writing large messages on a white board. Insurance money helped pay for modifications to the family home, including a custom-designed bathroom, lower kitchen countersand a moreaccessible backyard deck.

It also made it easier for Cheryl to quit her job with the federal government and provide Jodi with full-time care.

"She's made herself do it for Jodi," Byrne said."There's so many pressures. I don't know how she does it. I really don't."

Emotional toll 'heavier and heavier'

Now, nearly 14 years after the crash, Jodi has progressed to the point where she can communicate with her family using sign language, as well as touch-screen technology that lets her send text messages and emails, and play music.

Her family says she's slowlyrelearning how to walk, getting up from her wheelchair afew times each day, while also gradually figuring out how to form words again.

But there's an increasingly pressing concern: what Jodi's future will holdwhen her family's no longer physically able to provide her current level ofsupport.

Six years ago, Cheryl's husband, Raymond, also 61,had triple bypass surgery after suffering a heart attack. While he and the couple's other two adult children pitch in, Cheryl has become Jodi's primary caregiver.

Cheryl said she's been gettingsick more than she used to, and as the months go on, it's been gettingmore difficult to get Jodi in and out ofher chair.

Then there's the emotional toll, whichcomes with itsown weight.

Caregiver burnout is a real issue. And we hear that time and again.- Amy Coupal, Ontario Caregiver Organization

"It gets heavier and heavier as the years go on. And you seeeveryone else their lives are moving forward," Cheryl said.

"There's so many little triggers, too. Now she's skiing, I take her skiing. And when I go into that chalet, I think of her before[the crash]. You lose a lot. It just gets more emotional, it does, as the years go on."

According to a 2019 study published by theOntario Caregiver Organization (OCO) andhealth policy think-tank The Change Foundation, more than half of caregivers admit feeling overwhelmed by their responsibilities.

Slightly more than half of the 800-plus caregivers who took part in the study also said they feltanxious or worried, while more than 40 per cent struggled with feelings of frustration.

"Caregiver burnout is a real issue. And we hear that time and again," said AmyCoupal, OCO's chief executive officer.

To address that, OCOis preparing tolaunch a support network that connects stressed-out caregivers with others who are "walking their walk," Coupal said.

Since last November, they've also operated a toll-free support line.

"Often caregivers are not getting a lot of sleep. They're not looking after their own diets. They're definitely not exercising. They're really not doing the things that we all need to do to stay healthy,"said Jacquie Levy, the co-owner of Action Potential Rehabilitation in Ottawa, andpart of Jodi's care team for more than a decade.

"Caregivers themselves get ill, because caregiving is such a difficult job. And so [while] we're busy worrying about our patients, we have to make sure as therapists we look up and see the caregivers and their needs, too."

Housing needs

As forparents facing the uncertainty of what will happen to their child after they're gone, Coupalsaid it's important to begin talking about those plans sooner rather than later.

That's partly why a foundation set up in Jodi's name has pivoted from simply raising awareness to bringing in money for more residential housing.

The shortage of targeted residential care in Ontariohas been a pressing concern for families of brain injury victims, with some tellingCBC their lovedones face waits of a decade or more before a bedopens up.

"It's not if we're going to die we're going to die," Cheryl said. "So when that time comes, [the concern is] thereis no place where somebody like Jodi would fit in."

It's Cheryl's firm belief that had she not left her job to care for Jodi, her daughter would have ended up in one of two places: a long-term care home without proper support, or due to anger issues exacerbated by her injuries a locked psychiatric ward.

The family's dream is to openhomes where residentshave individual units, similar to her daughter's current setup, with communal living and cooking spaces, exercise and meeting rooms, plus access to 24-hour-a-day care.

The fundraising isstill in the early stages,but Cheryl said they won't give up.

Nor, she added, will Jodi.

"We recognize every little baby step she takes. And as long as she stays motivated, well, we'll help her as much as we can."

What its like to care for someone with a brain injury

5 years ago

Duration 1:43

Cheryl Graham, who has been caring for her daughter, Jodi, since 2006, describes what its like to be a caregiver and what she worries about for her daughters future.