‘They’re often overlooked and not heard’: Family caregivers need more support, says nursing expert

Clementa Stan is the only full-time caregiver for her sister.

For more than a decade, Stan has been the main support network for her sister after she was diagnosed with a mental health illness when she was a teenager. Her sister is now in her mid-30s.

“It’s been quite the journey,” said Stan. “I would use the analogy of a rollercoaster.

“Our lives are so closely intertwined with our persons. So, when my sister is in crisis, I’m in crisis.”

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The siblings were raised by their grandmother in Romania, after their mother wasn’t able to care for her daughters. She had also suffered from a mental illness and passed away a few years ago.

Stan said after about 13 years of ups and downs, they were finally able to find the right medication for her sister.

“It’s been a challenge and it’s part of my identity, being her support system,” said Stan.

“Is it exhausting. I’ve experienced stress, I’ve experienced burnout. Most of the 15 years we’ve been on guard, on call.”

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Stan has the help of her husband and the couple provides 24-7 care for her sister living in their home.

They are advocates, meet with doctors for treatment plans and take her to all her appointments.

But Stan stressed they need help.

Access to timely care and more support for mentally ill patients is a start.

She said accessing the mental health and addiction support system is complex, fragmented and underfunded.

“There are families that wait six months, a year, to get into a program,” said Stan.

She said when loved ones are in crisis, caregivers should be able to call someone and not be afraid that the police are going to show up — or their family member is taken to an emergency room to wait endless hours.

Stan wants psychologists to be stationed in emergency rooms to provide immediate treatment if needed.

It’s the same heartbreaking situation for caregivers across the country.

Dr. Edward Cruz, a nursing professor at the University of Windsor, interviewed dozens of caregivers — mainly those caring for adult family members with mental illness and addictions.

He wants Canadians to question: Who is caring for caregivers?

Caring for the Caregiver is also the name of a free virtual conference, scheduled for Oct. 23, 2021.

Cruz and collaborators at Hôtel-Dieu Grace Healthcare and the WE-Spark Health Institute will address the “recurring themes” they discovered with caregiver research.

Sessions will include information on psychiatric disorders, substance abuse, how to navigate the health-care system and dealing with compassion fatigue.

“They’re often overlooked and not heard,” said Cruz of caregivers.

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“The things they’re asking for is so little compared to the amount of work, the amount of unpaid work they are providing, caring for an ill family member.”

Cruz said it’s critical caregivers are part of the health-care team and included in conversations with medical professionals.

He said caregivers have also pointed to privacy and confidentiality hurdles and suggested changes to legislation.

“Caregivers have a lot of insight they can share with health-care providers but often because of legislation — or sometimes the health-care providers are not into listening to the caregiver — so they are ignored. As a result, they sometimes question whether the care their loved one is receiving is appropriate.”

Then there’s the physical, emotional and financial drain on caregivers.

“They’ve actually verbalized that they too need help. Some of them recognized the need to go to counselling,” Cruz said.

In some cases, the caregiver has had to quit their job or retire early to stay home with a loved one. The fear of being away from their ill family member has forced many to give up vacations.

Even leaving the house to go to the grocery store can be terrifying and stressful.

“They worry about what they’ll come home to,” Cruz said.

“There’s certainly a need for our health-care system to be more cognizant of the challenges faced by caregivers.”

Stan said despite the fact that her sister is doing well right now and working, there is the constant fear her sister will relapse.

“You’re their friend, you’re their doctor, you’re their social worker. It takes a huge personal toll.

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“I think everything in my life has been overshadowed by that.”