A mental health advocate is demanding medication management and other basic home care services be provided to those with mental illness after his sister, who has acute-chronic schizophrenia, was hospitalized twice in the past month.
Since the pandemic began, Paul Ouellet has watched his younger sister spiral into psychosis because personal support workers are not available to make sure she is taking her medication.
"There was no one available to go in and to provide this medication management to my dear sister Lorette and she was left on her own," Ouellet explained.
Before the pandemic began, a personal support worker would visit Lorette, 65, at her apartment each day to help her with housekeeping, shopping, getting to and from appointments and most importantly, making sure she was taking her medication regularly and in the correct doses.
Since the pandemic, Lorette, and many other New Brunswickers are no longer receiving these basic and critical services because there is a shortage of home care workers.
Haley Flaro, executive director of the non-profit group Ability New Brunswick, says the shortage of personal support workers was already "a crisis", and since the pandemic began the problem has only gotten worse.
Ability New Brunswick provides support to New Brunswickers living with a mobility disability.
"We certainly have seen a reduction in the availability of workers," she said, explaining that many home care workers left their jobs when federal benefits were introduced.
The Canada Emergency Response Benefit provides $500 per week for 12 weeks. For home care workers in New Brunswick, who by and large work part-time and earn only slightly more than minimum wage, it was "more lucrative" than working.
"So it's actually put people in a position where it's safer, better, and financially more stable to not work during this period," Flaro said.
The federal benefits, according to Flaro, have led to "significant reductions in home support" for many of her clients.
"Many are living in unsafe environments because they can't get the right care they need," she explained.
"Many are at risk of hospitalizations or unnecessary nursing home placements, so the home support worker crisis that we were already experiencing in New Brunswick has been escalated by the pandemic."
Burden shifting to families
While Ouellet understands why some home care workers have left their jobs during the pandemic, it has left his sister with no one to ensure she takes her medication, washes regularly and has groceries in the fridge.
It is not her fault that she's not taking the medication as prescribed. - Paul Ouellet
While he talks to Lorette every day and reminds her to take her pills, Ouellet said he can usually tell within a few minutes whether she is.
"I would talk to her, yes, but Lorette would say, 'Paul I'm taking my medication. Paul I'm taking my medication.' What else can I do?"
"It is not her fault that she's not taking the medication as prescribed."
Flaro said family and friends are trying to fill the gaps, but she worries it is leading to increased burnout.
"We're quite concerned and trying to work with families around that because the burden has really been increased on their shoulders."
A plea for help
When asked to describe his sister, Ouellet smiles and says Lorette is "a beautiful person" with "a lovely soul."
She was studying languages at university when the symptoms of acute-chronic schizophrenia appeared in her early 20s.
You can't help when you meet her but to love her…the suffering that she goes through on a daily basis it's so sad. - Paul Ouellet
At her best, Ouellet says, she is a great conversationalist who loves to go to church. At her lowest moments, when she isn't taking her medication, Lorette becomes very anxious, frustrated and then begins to withdraw.
"She will call me and she'll say, 'Hi Paul.' I'll say, 'Oh hi Lorette, how are you doing?' And she does not answer. She does not answer. And then I'll say, 'Lorette,' I'll say, 'Is there something wrong? Is there something you would like to share with me?' And she doesn't talk. And those are some of the symptoms that she's starting to go into a psychosis."
He worries about his sister from the time he wakes up in the morning, until he goes to bed at night.
"When I'm with her she'll talk to the voices and say, ''Keep quiet, keep quiet.' She suffers the agony with her illness."
Hospitalized twice in less than a month
Sifting through his stacks of notes, Ouellet double checks the dates of Lorette's latest admission to hospital.
Her first stay in the psychiatry ward came on April 30. She was released on May 21 but there was still no home care worker available to ensure she was taking her medication.
Ouellet pleaded with Lorette's health care team to ensure medication management was in place before they sent her home.
"They just said they didn't have anyone to to look after the medication management. And I said, 'Well until you do…I suggest that you just keep her in the hospital because I can assure you, in my humble opinion, that if we release her from the hospital in the state that she's in, that within a day or two she will be readmitted.'"
Two days after her release from hospital, Ouellet was dialling 9-1-1 at 11 o'clock at night.
"I received a phone call from neighbours in the apartment building…they call me and they told me, 'Paul we can hear Lorette screaming in her apartment. She's screaming. Her door is closed and we can hear her screaming in the hallway.'"
Ouellet immediately headed over to her apartment to try to help his sister, along with paramedics and RCMP officers.
With tears in his eyes, he describes how she resisted going back to the hospital.
"She said 'I don't want to go there, I don't like it'," Ouellet said. "She just dropped on the floor. She did not want to be re-hospitalized."
As she was put on a stretcher, his sister stopped speaking and stared at everyone "with glossy eyes."
For Ouellet it is excruciating to watch his sister suffer, especially when it could be prevented if there was a home support worker available to help her.
"It's very troublesome. It's very heart-breaking," he said.
"When I see the care that she is not getting and I say, 'If I wasn't around, where would she be? How would she be treated? And not only her — each and every person in New Brunswick suffering from mental illness."
Letter to Minister
After his sister's first hospitalization, Ouellet sat down and wrote a letter to Social Development Minister Dorothy Shephard, explaining why he believes medication management should be considered an essential service.
He suggested another department take over the provision of the service if Social Development is unable to.
"Perhaps that essential service could, do you suppose, be rendered by the extra-mural nurses within the Department of Health," he wrote.
Ouellet hopes the provincial government will find a way to solve the problem soon.
"Who knows how long the pandemic is going to last. Even if it goes away, are we going to have another episode of the pandemic in the fall or next winter? We need to solve it now. It's urgent."
On Thursday read part two of this series on home care in New Brunswick. We will hear from a home care worker who has continued to work since the pandemic began. On Friday Social Development Minister Dorothy Shephard will respond to concerns about the availability of home care workers and what her government is doing to improve the situation.