'He has no quality of life': Daughter of long-term care resident says system changes urgently needed

CBC's series Concerning Care takes a closer look at home and respite care in Newfoundland and Labrador, which has Canada's oldest population. It focuses on a shortage of workers, the emotional and financial toll of loved ones providing care to family members and issues that home-care workers themselves face.

Few things about Frank Tucker's life haven't changed.

One is that a Wunderbar is his favourite chocolate bar. The other is his daughter Sherisse Tucker's love for him.

Sitting on a black leather couch in her parents' living room in Mount Pearl in late February, she thinks back to easier times.

"My dad is the most hilarious man you'd ever want to meet," she said. "He's funny. He's caring. His whole life was his family."

That life was disrupted when Frank received a diagnosis of Alzheimer's eight years ago, at 61.

For five years, medication slowed down the disease, but struggles soon followed — the search for reliable home care, Frank's repeated escapes. In October 2021, a move to long-term care became unavoidable.

His family hoped his new home, Pleasant View Towers in St. John's, might be the safest place for him. 

Now, more than a year later, Tucker thinks the constant worry about Frank's care there contributed to her mother's death on Jan. 30 due to Hodgkin's lymphoma.

"It's totally destroyed our family," said Tucker.

"It was too much. She didn't worry about her own symptoms. She wasn't feeling well and she was just worried about Dad. And so she let it all go until it was too late."

From the moment of Frank's admission, Karen, his wife of 47 years, his daughters, and other family members made sure he was stimulated, entertained and barely alone.

But in July, Frank contracted COVID-19 — and changed.

"He was never mean. And he just got mean," said Tucker. "His behaviour would escalate. And it would escalate to the point that he may shove someone, or he may get in someone's face and yell at them."

Staff started sedating Frank and relied increasingly on his family to calm him down, according to Tucker. 

"It got to a point that they were calling us every single day," she said. "Oftentimes, when we would get there, it would be so easy to settle him. It was very frustrating."

Something that often worked was offering Frank his favourite treat.

But while some staff members successfully used the family's advice on how to handle Frank — "you pull out a Wunderbar" — others didn't, said Tucker. She believes a "huge gap in communication" between floor staff and management is the culprit.

Issues around sedation started coming up more frequently. Sometimes, Tucker and her sister would help, giving Frank the injection themselves until they were told to stop. Other times, no staff member trained to sedate or restrain was on shift.

That scenario eventually led to police and paramedics being called to deal with an agitated Frank, who was brought to the Health Sciences Centre. There, Tucker wasn't allowed to see her father for eight hours.

"They didn't have the staff to deal with him," said Tucker. "So they just kind of threw their hands up in the air and said, 'You know what, this is the decision we're going to make.'"

Afterward, said Tucker, it was discovered that a COVID-induced psychosis caused Frank's behaviour. Medications were adjusted, but the calls to the family continued. So in December, Tucker filed a complaint with Eastern Health.

"They called us, 'Well, we can't find his shoe,' or 'He needs to be changed and he won't get changed.' I mean, those types of things, that's what us, the family, the government, the province, that's what we're paying for," said Tucker.

"That's the biggest piece for us, is that they had us feel like we need to take on all of this."

A meeting with facility and unit managers and the recreational therapist resulted in promises for improvements and a clarification on sedation — while nurses are trained to give injections, they can't restrain residents, Tucker was told, and security in place to help is only available on weekdays.

For Tucker, staffing issues are at the root of it all. Six workers, she said, care for 30 to 35 residents on her father's unit.

"Patients who are trying to escape, who are incontinent, who are needing assistance trying to be fed. That's not enough people," said Tucker. "You can see that the staff are tired."

High numbers of casual staff, she said, aren't ideal for Alzheimer's patients in need of consistency. It also means a lack of experience with residents' behaviour.

The recreational program for Frank's unit, she added, "is not functioning" and consists of a radio or TV turned on in the dining hall.

"All he does is sit down in a chair all day long with no stimulation," said Tucker.

That's hard to provide if you're covering as many as 40 to 110 residents at a time, on several different units, said Registered Nurses' Union president Yvette Coffey.

"We've had some [nurses] cover greater than 110 at some points with the critical staffing shortage," she said.

If you don't have the staff, you can't open the beds

The latest numbers available to the union show that more than 240 provincial long-term care beds are unavailable. Three new facilities, two in the Central Health region and one in Western Health, can't open to their full capacity and another in Gander is closed to admissions.

While these issues are on the government's radar, Coffey said, there needs to be a long-term strategy for worker retention.

"If we don't retain every single nursing personnel that we have in long-term care, we are never going to be able to open up all those long-term care beds," she said.

Bonuses to achieve that were announced by Health Minister Tom Osborne on March 27, including up to $3,000 for existing and up to $8,000 for new staff. A provincial dementia-care plan released Thursday also aims at improving health-care workers' dementia training.

Eastern Health refused an interview request by CBC News but responded to a list of emailed questions.

While the facility houses a total of 460 beds, Eastern Health says 404 are open, with 481 nursing positions staffed. According to recent statements by Eastern Health's vice-president of clinical services, Judy O'Keefe, there are about 150 vacant positions at the facility.

While the staff-to-resident ratio depends on many factors, the statement says, Eastern Health tries to have a full complement of staff working daily.

How many staff members per shift are casual, it continues, also varies: "For example, on average, for the week of March 1-7, 2023, about 31 per cent of RNs and about 47 per cent of LPNs and PCAs who worked daily shifts at [Pleasant View Towers] were casual (or temporary call-in for NAPE) employees."

While staffing issues already existed pre-pandemic, said Newfoundland and Labrador Association of Public and Private Employees president Jerry Earle, fewer graduates, retirements, employment changes and burnout have likely made things worse.

"There's probably not a long term-care facility that's not impacted," he said, adding efforts to increase the number of seats in College of the North Atlantic LPN and PCA programs will take time to show results.

About 4,000 LPNs and PCAs, of which about 75 per cent work in long-term care, are represented by NAPE.

Earle hopes government's long-term care home review will include a re-evaluation of the staff-to-resident ratio.

"Because of the complexity of care, because of the level of care, their staffing ratios that were determined in excess of a decade ago just does not meet up to the demand of residents today," said Earle.

"[Staff] feel they're going into a room, doing the care that's necessary, and then exiting the room."

'It's just not there'

Sherisse Tucker wants more than that for her father and his fellow residents.

"He has no quality of life. It's a sin," said Tucker.

"People have this vision of long-term care and they think of some of the personal care homes that they have all these types of activities and stuff, but it's just not there.… If you have a loved one in long-term care, if you're not checking on them, they're not getting what they need."

Concerning Care tells the stories of the people introduced here, along with others, on various platforms — including on Here & Now, CBC N.L.'s website and on the radio.

If you have a story to share, contact us at care-struggles@cbc.ca.

Read more from CBC Newfoundland and Labrador