Families shouldering burden as home care dwindles for dying patients

Rose Steenbakkers grew up in Saskatchewan, and even in her weakened condition, a certain no-nonsense Prairie spirit shines through.

"My hair has been coming out in clumps," the 78-year-old states matter-of-factly.

Like her hair, Steenbakkers has also watched her independence fall away, her energy diminish. She's rail-thin, and now has to rely on her adult children for her most basic needs, including help going to the toilet.

"I'm trying to get my legs moving, but I just don't have the strength anymore,"  she said.

Steenbakkers is in the last stages of her life. She agreed to speak in the hope that telling her story may help others.

"My motivation is to see if we can put some kind of better care into place so it takes some of the burden off the family."

'There is no coming back'

In the spring Steenbakkers began experiencing a persistent cough.

"And my mom being my mom, she thought it was nothing," said Cathy Deevey, one of her six children.

She was in the hospital for 10 days and it was terrible, horrible.- Cathy Deevey, daughter

"Finally she went in and got it checked and she was diagnosed with stage four lung cancer which had spread to the brain and is now in the liver. So there is no coming back."

Steenbakkers only recently got out of hospital, an experience she is determined not to repeat. 

"She was in the hospital for 10 days and it was terrible, horrible," said Deevey.

Now Steenbakkers receives daily visits from a nurse, and a personal support worker comes by once a week to give her a shower.

Both her palliative care physician and her children say Steenbakkers needs more attention. But she happens to be dying at a time when provincial funding for home care in the Ottawa region is temporarily running dry.

Taking toll on family

Instead, the task of looking after Steenbakkers is falling on the shoulders of her children. Another daughter has moved in to look after her mother, while Deevey comes by on weekends to help.

"We get her out of bed, we get her into the bathroom in the morning. We have to lift her out of bed. We have to stay right behind her because she could fall. We have to lift her off and on the toilet."

It's taken its toll, Deevey said, especially on her sister, who did not want to be interviewed.

"She has broken down in tears…. I've come here at night on more than one occasion because she is breaking down, because she is exhausted."

Although Steenbakkers has lost of lot of weight, moving her around still isn't easy.

"These girls are straining their backs trying to move me around and I need somebody who is a little bit heavier," she said. "They are doing everything they know how to do."​

'It puts a lot of stress on everybody'

Dr. Paul Hacker said Steenbakkers is just one of his patients who's not getting enough non-medical support.

"It puts a lot of stress on everybody," Hacker said. "It puts stress on the caregiver who may not be physically able to do everything that they are supposed to be doing ... and it puts stress on the patient because they see the difficulty their caregiver and family is having.

"Often when it comes down to an adult child who is doing toileting or doing bathing that can be very difficult for both people, and so being able to have a personal support worker doing that kind of thing, that makes a big difference in the ability of families to look after people."

Hacker said about two months ago the Champlain Community Care Access Centre informed him and other palliative care doctors that it would have to cut back on personal support worker hours.

The reduction means patients who may not have long to live are being placed on a waiting list for sufficient home care.

To draw attention to the problem, Hacker recently wrote a blog post titled "Champlain CCAC rations patients' personal care in their dying days."

"The government has been focusing  on trying to get care out of the expensive hospitals and into the community where costs are less, where patients want to be ... but unfortunately the funding has not followed the patient home from the hospital," he said.

Overwhelmed CCAC 'prioritizing' care

The Champlain CCAC is funded by Ontario's Ministry of Health and Long-Term Care. Of its $231-million 2014/2015 budget, more than $83 million went to personal support services.

The CEO of the CCAC, Marc Sougavinski, confirmed the agency has had to reduce the level of personal support services but says the rationing hasn't affected nursing.

Sougavinski said the CCAC has been "prioritizing" home care since the mid-summer, a situation he blames on an "incredible" surge in the number of people needing the services — more than 5,000 referrals, a record for the agency.

"Everyone is constantly overwhelmed by the needs we have and the requests we have," Sougavinski said.

Sougavinski said the situation could continue for another three or four months, until the CCAC gets its next block of funding from the province.

"It's a tough situation and we all know that," he said. "If [patients] are in crisis, if they are not safe and so on, they will get the service."

Feels like a crisis

For Cathy Deevey, whose husband is also battling cancer, her mother's predicament certainly feels like a crisis.

"It's really, really hard for me to leave my sick husband and come and help my sick mother and my sister who is overworked. It's an impossible situation, but I have to do it."

More and more lately we are seeing people, elderly spouses or other elderly relatives who have their own medical problems being pressed into service and doing more than what they thought they were able to do.- Dr. Paul Hacker

And yet it's a situation Hacker says is becoming more and more common in the region.

"More and more lately we are seeing people, elderly spouses or other elderly relatives who have their own medical problems being pressed into service and doing more than what they thought they were able to do."

The Champlain CCAC said it's building a strong case for more funding next year, but Rose Steenbakkers and her family know that help will likely come too late.

They've been told Steenbakkers may not live to see 2017.

"They said, 'Enjoy your Christmas,'" Deevey said.