Lewis Perelmutter looks at his late wife in a family picture. Perelmutter struggled with stress and exhaustion from caring for his wife, who became depressed while living with Parkinson’s disease.
Lewis Perelmutter spent close to a decade brimming with anger and frustration as he struggled to care for his ailing wife. It wasn’t until after she died that he realized the stress almost killed him, too.
“Looking back, I really needed help,” he said. “As a man, I was too proud. I said, 'I can do it.'”
Every night, he would wake from his sleep, flick on the light and walk down the hallway to look after his frail, bed-ridden wife. Parkinson’s disease and depression had seized her body and mind.
She was unable to control her own muscles, so Perelmutter spent his nights repositioning her to keep her lungs from filling with fluid, a common symptom of the disease.
Perelmutter says he hit a wall both physically and emotionally. He was forced to hire an additional nurse aid, but it cost him a fortune and just wasn’t enough.
Studies show the problems Perelmutter faced are common among caregivers. Eight in 10 grapple with severe emotional stress.
According to Health Canada, women taking care of their mentally ill children report the highest levels of stress, while men caring for someone outside of their family are the least affected.
The Canadian Mental Health Association warns that these emotions push caregivers into cutting off social networks and drifting into isolation.
Ann Popovich, a retired psychiatric nurse, says the common factor sparking caregiver burnout and depression is overextension.
Friends and family members taking care of someone with mental illness often find their role as home-care provider snowballing into many more responsibilities. Suddenly they are nurses, counsellors and advocates. And nearly one-third of them also work outside the home.
“They feel that’s what they have to do and often don’t look for support themselves,” Popovich explained. “They soldier on and on.”
Experts say this extra work can lead to depletion and evoke feelings ranging from helplessness, shame and fear to anger, depression and guilt.
Lily Penso, whose son is developmentally handicapped and schizophrenic, continues to ask herself painful questions after two decades of living as a caregiver.
“What went wrong with the pregnancy? Or did I?” her voice trails off, her eyes welling up with tears.
“He’s our only son; we have two girls, you know. I feel badly that my husband couldn’t have the pleasure of a son that he could play ball with and do all the boy things," she said.
Popovich also has a son who was diagnosed with a serious mental illness 21 years ago.
She says shame and blame can paralyze parents for many years after the initial diagnosis.
But no matter what happens to their child, parents will always feel some degree of responsibility, she says.
“When you’re handed your baby at the hospital, what you don’t see is a little string attached to it with a bag of guilt,” Popovich said. “It comes with the kid.”
Where caregivers go wrong is by severing all ties to their old life, experts say. What they need to do is make time for themselves outside the home; something as short and simple as meeting a friend for a cup of coffee or seeing a movie once a week.
Professionals also recommend hiring a personal therapist or joining a local support group.
Perelmutter continues to reflect on his wife’s decade-long battle that ended four years ago.
He says while his wife slowly deteriorated in front of his eyes, all he tried to do was make it through each day.
“I should have, if I was smart, sought help.”