10 years of care puts family on verge of burnout

As the primary caregiver for her husband over the last decade, Nan Amaratunga has reached the point of burnout.

In 2005, her husband, Laxman (Lucky) Amaratunga, was diagnosed with amyotrophic lateral sclerosis (ALS), a progressive and invariably fatal neurological disease that attacks a person's nerve cells and impairs their ability to control their muscles.

The average life expectancy for a person with the disease is two to five years.

For Lucky (as most know him), the symptoms started in his legs. He was a frequent walker, and often took his two children for strolls to the Laurentian University campus when they younger.

But what started with a limp, progressed to the point where he had to rely on a wheelchair for his mobility.

Despite the challenges he faced, Lucky, who had long been a respected professor of mine engineering at Laurentian, continued to work until June 2015.

He lost his ability to speak – and to breathe on his own – in 2013, after a bout of pneumonia forced his doctors to perform a tracheotomy.

But with the help of teaching assistants, and his wife, he held on to his position for another year.

Due to his legal blindness – which predated his ALS diagnosis – Lucky communicates by blinking. A family member or caregiver will hold out a board with the alphabet, and a few common words, and read out each letter one by one. When they read out the letter he wants, he blinks. And they start over again with the next letter.

It is a slow and painstaking process, and illustrates, to a small degree, the level of 24/7 care he requires.

Nan had to leave her job with Revenue Canada in 2009 so she could dedicate her time to his care.

“I'm so dead scared because if something happens, I need another pair of hands to hook him up into the oxygen,” she said.

Even trips to the grocery store are enough to induce anxiety, as she rushes through the aisles as fast as possible so she can get back to caring for her husband.

Nan receives some respite from the North East Community Care Access Centre (CCAC), but she told NorthernLife.ca it is both insufficient and inconsistent.

Clarifying the care she receives from the CCAC is fantastic, her registered practical nurse and personal support worker only come two nights a week. That means she goes without – or with very little – sleep most nights.

There have also been many cancellations at a moment's notice, and due to issues within the system, including low compensation and burnout among care providers, Nan has seen a steady rotation of new registered practical nurses and personal support workers.

Each time a new worker starts, she has to train them how to handle her husband's complex needs.

Her son, Dr. Ruwan Amaratunga, is a respirologist, and able to provide occasional respite care for his father, but he lives in Ottawa.

“Even if I lived here, as a physician, I barely have enough time to take care of myself,” Ruwan said. “Pretty much, either myself or her (Nan) has to be here.”

Ruwan said he worries about the constant stress and pressure his mother is under.

“What I really worry about is creating two patients out of one patient,” he said.

If Nan, who is now 68 years old and has her own health issues, can no longer care for his husband, he would need to stay in the hospital's intensive care unit, where he would cost the health care system thousands of dollars a day.

The CCAC has said nearly 80 per cent of all caregiving in Canada is provided on a volunteer basis, primarily by family members like Nan and Ruwan.

Ontario is expected to overhaul the home-care system completely, which NDP health care critic France Gélinas has described as “broken.”

In September, a report from Ontario Auditor General Bonnie Lysk concluded the provincial government needs to take a “hard look” at how Ontario's CCACs, along with their third-party providers, deliver home- and community-based care.

The Registered Nurses Association of Ontario has recommended disbanding the province's 14 CCACs and transferring their responsibilities to the Local Health Integration Networks, which already cover the same geographic areas.

Nan said she has hired live-in caregivers in the past, but they eventually move on to other jobs. She said she is willing to use her (and Lucky's) retirement savings to hire another live-in worker, but has faced rejection so far.

While there are some qualified candidates in the Greater Toronto Area, she said, they either don't want to move to Northern Ontario, or get scared off when they learn about her husband's complex needs.

She has found two candidates in Sri Lanka – where she and Lucky were born and grew up – but has not been able to get them work permits from Citizenship and Immigration Canada.

“He's a dying man,” she said. “If someone is willing to come and take care of him, please give them a work permit under special circumstances.

“I'm not asking for a handout.”