She asked a lot of questions. Then suddenly she was gone
Before Margaret Calver was banned from her husband's dementia unit at the Markhaven Home for Seniors, she visited for hours every day.
She'd brush Wayne's teeth, help him eat, hold his hand and, to keep him calm, she'd walk with her husband of 60 years, a former military officer and later, a principal and superintendent at the old North York Board of Education. Margaret was an essential caregiver - before COVID-19 made it an official designation.
On Aug. 19, 2019, Markhaven's then-executive director Mike Bakewell sent Margaret a letter by registered mail, informing her that she was officially barred from all residential units in the Markham not-for-profit home - the outcome of an internal investigation into allegations that she micromanaged, challenged and criticized staff. The letter said Margaret's vexatious behaviour" met the definition of harassment in the Occupational Health and Safety Act, although she'd be allowed to visit her 83-year-old husband in Markhaven's auditorium or library by following half a dozen written rules.
At a time when a large demographic of older adults is demanding institutionalized nursing homes be replaced with new options - like smaller households or funding for at-home support - Margaret's story exposes the power imbalance between families and the long-term-care system.
Homes have incredible control over the lives of the residents and family access to them," said Jane Meadus, a lawyer with the Advocacy Centre for the Elderly, a low-income legal clinic.
In the letter, Bakewell said the home's investigation" into Margaret's behaviour concluded, on the balance of probabilities Mrs. Calver did engage in harassment against a wide variety of staff over an extended period of time."
He said 30 witnesses were interviewed and almost all mentioned you" when asked about harassment." And, Bakewell wrote, the ban was supported or endorsed by inspectors from Ontario's long-term-care and labour ministries. Family Councils Ontario, he added, recommended we consider removing you from the home." Margaret is the long-time chair of Markhaven's family council.
But, in a recent interview, FCO said it had no knowledge or record of any discussion related to the ban. The labour ministry told the Star its inspectors did not recommend removing or banning individuals from this long-term-care home." The long-term-care ministry said its inspectors examine homes for compliance: It is not the role of a ministry inspector to comment on or endorse a home's plan to ban an individual from their premises."
The Star reached out to Bakewell and Markhaven numerous times since Feb. 23 with detailed questions, including requests to respond to the government and FCO denials. Bakewell now works as executive director of Bennett Village in Georgetown. He did not comment.
Jonathan Tucker, Markhaven's board chair, agreed with Bakewell's original letter: the decision to ban Margaret from the home's residential areas, he said, was made in consultation with representatives of Family Councils Ontario, the Ministry of Health and the Ministry of Labour."
A board member since 1995, Tucker responded in writing to the Star's questions. The ongoing challenges with Mrs. Calver are incredibly unusual, and in all my years of involvement with the home, I have never seen these conditions set for a family member or caregiver," he said.
On the day Margaret was banned, the sister of another resident received a letter from Bakewell detailing the results of a similar investigation into her behaviour. It found on the balance of probabilities" the woman did engage in harassment against staff," but she was given a second chance. Tucker said she was reminded to be mindful" of her actions.
From 2016 to 2018, he said management received several" verbal and written complaints about Margaret from staff and families. Margaret's husband, Wayne, moved into Markhaven in 2009. Bakewell arrived in the spring of 2016. Tucker said this behaviour" preceded Bakewell's tenure, although Margaret said she received no earlier complaints.
Tucker said Markhaven's investigation into Margaret revealed numerous examples of intimidation and harassment that resulted in fear of being fired or reported, staff taking time off for stress leave and requests to be transferred to another home area. In some instances, staff reported behaviour that made them feel worthless, paranoid and embarrassed."
Margaret had asked for an external investigation to avoid bias. Tucker said the home's investigation was led by a human resources professional and noted that the union steward" attended staff interviews as an independent third-party observer." The union steward, however, was an employee of Markhaven.
The union said it hadn't heard of an investigation until now.
We hold dear the bonds between residents, family and caregivers, especially at end of life," said Ken Evett, SEIU Healthcare's union representative overseeing Markhaven.
The union was not involved in any process to remove anybody from the nursing home and the decision to remove someone would not be ours to make."
It is not unusual for families and operators to have a different perspective on the life and work that unfolds within a home.
Tucker said Markhaven had to follow Ontario labour laws and prioritize" staff well-being.
Margaret knew that some staff did not appreciate her comments, like the time she told a worker to properly follow posted directions for Wayne's sleep apnea device, but said she had good relationships with many, advocated for more hires and fundraised for staff appreciation events. Evett said the union deeply values" family council advocacy for improved care and work conditions.
Markhaven has made these allegations repeatedly since 2016, in written communications," Margaret said. I was always very involved in Wayne's care, right from his arrival at Markhaven, and spoke up whenever he was not properly cared for. I advocated for other residents when their family members weren't there."
It was dementia that brought Wayne to Markhaven 12 years earlier and Margaret spent most of her days with him in the home's locked Parkway" dementia unit. Wayne could be aggressive, sometimes lashing out, and Margaret said his room gave them both a familiar, comforting space.
Nancy Oliver, whose husband, David, died in Markhaven in 2017, said Margaret was a constant presence for her husband - and other residents.
Marg is a go-getter," said Nancy. She's a right-doer."
Markhaven had a different opinion.
In May 2019, three months before the official ban, Bakewell sent Margaret notice of the impending investigation with a point-form summary of allegations" that said she was rude, sarcastic and intimidated staff. It said she demanded a worker smell feces," which, on the surface, seemed an unusual request, but Margaret told the Star the allegation excluded key details.
Margaret said she noticed the gauze-covered splint on her husband's fractured thumb was soiled a brownish colour and knowing that he chewed on it, she asked a worker to confirm the origin of the substance. At the age of 80, she said her sense of smell had diminished and she wanted to be sure.
One worker refused. Margaret persisted. Another smelled it and, according to Margaret, said, it's poo." Not only had Wayne been chewing on it all morning, Margaret said, but he had also been walking through the common areas, touching tables and railings with the soiled splint, which she believed was unsanitary for other residents.
In the 27 months following the ban, which collided with COVID lockdowns and outdoor-distanced visits, Margaret said she was able to get close enough to touch" her husband less than 40 times in Markhaven's common areas before Wayne, a chemical engineering graduate of the Royal Military College of Canada, died on Nov. 15, 2021.
Margaret was not with him in his room when he died, but was allowed to sit with his body. Two of her three children, her daughters, stayed with Margaret talking about Wayne's life, his work as a principal at the Baden-Baden military base high school in Germany, his years at Earl Haig and Bathurst Heights, and later, the husband-and-wife globe-trotting that led to jobs as educators in Malaysia.
It robbed me of more than two years of being with my husband at the end of his life," Margaret said. But more than that, it robbed my husband of my companionship and love and stimulation, and all of the things that spouses provide."
The long-term-care ministry doesn't collect data on the number of visitors banned, although as lawyer Meadus said, most banishments are not legitimate.
Homes go outside of their authority to prevent visitors when they are unhappy with things that visitors do, including things like complaining or doing something that homes may perceive as interfering, but ultimately homes don't have the authority to do that," she said.
You can't ban an individual for just being annoying or bothersome."
If homes believe a visitor is breaking the law, they should let police and the court system act first, she said.
In Ontario, nursing home residents are - theoretically - protected by the bill of rights" enshrined in legislation, although ministry inspections throughout the province show those protections, such as the right to live in a clean environment or free from abuse, are routinely broken. The 2007 Long-Term Care Homes Act was replaced last December by the Fixing Long-Term Care Act.
According to the old and new legislation, every resident has the right to receive visitors of their choice. Meadus said this right supersedes a home's ability to ban visitors, noting it is often done - improperly - through the Trespass to Property Act.
When relations deteriorate, a negotiated plan" can find a solution, said a veteran long-term-care operator. Family dynamics are complicated, said the operator, who was not authorized to speak publicly, and some relatives can be problematic, such as those who show up intoxicated and belligerent.
Sometimes harm is done where we will see them in the room disconnecting catheters or those kinds of things," the operator said. But those are very rare. I can think of three times in my 40 years when I've written a letter saying a family member cannot attend a home. And even then, we continue to have weekly meetings with them until we can lift those bans."
Media reports on the 2018 ban of a woman from her mother's Ottawa retirement home - a different housing system - led to a 2021 private member's motion by NDP MPP Joel Harden (Ottawa Centre). The motion requested the government tell nursing, retirement and group homes to stop banning families through the trespass act.
In many respects, families advocating for a loved one is seen as a crime. It is not a crime," Harden said.
Markhaven's letter banning Margaret did not mention the trespass act. Instead, it cited the Occupational Health and Safety Act's definition of harassment: Engaging in a course of vexatious comment or conduct against a worker ... that ought to be reasonably known to be unwelcome." Meadus, the lawyer, said the health and safety act governs employers and employees, not visitors.
Markhaven did give Margaret a visiting option, away from staff. In Bakewell's August 2019 letter, he said separating a resident from a spouse is inconsistent with Markhaven's values of compassion and caring" so Margaret could visit Wayne in common areas.
To do this, the letter cited a list of stipulations that included calling the nurse manager to bring Wayne down to the lobby. The nurse, Bakewell wrote, may be administering care when you call so you may be required to wait in the lobby until such time they are available to bring your husband to you."
When the visit ended, she must call the nurse manager and, he said, wait for the nurse to return your husband to his home area."
Under those rules, daily visits became next to impossible, Margaret said. I'm supposed to wait in the lobby for the duty nurse? The duty nurse is very busy. She doesn't have time to act as an escort.
Then I'm supposed to get him in the elevator and take him upstairs and wait around and find a room or place upstairs that may or may not be available? I couldn't physically do it myself. I could only do it when I had a family member to come in and go into the unit and bring him out. And that's how (visits) happened."
With a son living in Singapore and a daughter in Montreal, Margaret relied on her daughter who lived and worked 90 minutes away, in downtown Toronto, and Wayne's brother, from Hamilton.
Wayne was a strong man with significant dementia and was known to become physically aggressive. He felt comfortable in his room. Margaret said the new visiting rules often left him confused or agitated. Sometimes, Margaret said, she and her daughter struggled to stop him from falling.
The ban did not remove Margaret from her role as chair of the Markhaven family council, although her aptitude for advocacy may have led to her banishment.
Margaret asked a lot of questions. Very precise questions.
Marg is very curious," said Nancy Oliver, whose husband lived across the hall from Wayne. She wanted answers."
In the summer of 2017, Margaret asked why her husband was given a powerful antipsychotic drug, Haldol, without her permission. When Wayne went to the hospital for an overnight stay, Margaret said she approved the temporary use of a chemical restraint" to limit aggression, but several weeks later discovered the home continued to give him the drug.
A retired elementary teacher, Margaret corrected front-line staff, such as the time she spoke to a worker spooning food into the mouth of a sleeping man known to be at risk of choking. He is very sleepy today," she recalled saying.
In 2016, Margaret spoke to the Star about drug co-payment fees charged to nursing home residents, but not seniors in the community. She called the ministry and sometimes her complaints led to violations against the home.
I'm an advocate," she said. A whistleblower."
Markhaven called her a harasser.
In 2017, a year after Bakewell arrived at Markhaven, he sent Margaret a letter saying the home received requests from some family members to have their loved one moved off the Parkway home area because they feel that you are harassing them when they come to visit."
Nancy Oliver and Luz Costa, whose brother Jimmy lived in the home until his death last fall, said they heard no complaints from families. Margaret advocated for the residents so dearly," Luz said. She'd say, Please, why don't you put on some music, it's so dead in here.'"
In one of her responses to Bakewell, Margaret wrote, My intention is not to make staff feel defensive or uncomfortable but simply to bring attention to problems so that they can be remedied in the interest of residents."
Margaret kept all of Markhaven's letters. She wrote detailed notes in response. Sometimes she reminded management that under the legislation's immunity" section, no action or other proceeding shall be commenced against a member" of a family council for anything done in good faith."
In a 2017 letter, Bakewell questioned whether Margaret was spreading intentionally dishonest" information about the home's in-depth inspections. If Markhaven sees the withdrawal of residents, or frivolous investigations" as a result, he wrote, you may incur personal liability."
Margaret took that as a threat. Two years later, facing a ban, her lawyer did too.
After Bakewell announced Markhaven had embarked on an investigation by its human resources manager, lawyer Lisa Feldstein told him his earlier suggestion of a lawsuit created a bias. Feldstein asked Bakewell for an external impartial, objective" third party to investigate.
Mrs. Calver is willing to fully participate in an investigation; however, it is totally inappropriate that the investigation is conducted internally when you personally threatened a lawsuit against Mrs. Calver in 2017," Feldstein wrote at the time.
Markhaven continued with its internal inquiry. Margaret did not participate. Tucker, the chair of the board, said Margaret was invited multiple times" to take part in the investigation but declined to respond."
Unbeknownst to Margaret, another family member was being investigated at the same time. Luz Costa, a longtime bookkeeper who cared for her brother in Markhaven's dementia unit, received an email on July 4, 2019 alleging she harassed staff. It included a summary of allegations," some of which mirrored Margaret's.
Several witnesses report that Ms. Costa gives direction to staff, challenges qualified professionals and/or micromanages," the summary said. Her behaviour, it said, was belittling, condescending, harassing and/or bullying."
Not so, said Luz. She told the Star she offered staff suggestions, often when workers were new and didn't know the residents. One time I told a staff that a resident takes thickener (to make it safer to swallow) and I said, You are giving liquid.' Is that harassing?"
Luz, who is 73, said after receiving the letter, she and her husband walked into the management office to discuss the investigation. Luz said she told Bakewell that she spoke to workers to help residents. After that, I didn't talk to staff - I just said good morning," Luz said.
On Aug. 19, the day Margaret was banned, Bakewell sent Luz a similar letter that concluded she harassed staff but said it was possible" Luz was unaware of her behaviour. Tucker said Luz participated in the investigation so her visits were allowed to continue.
Margaret fought back.
What confused her, Margaret said, was the assertion that the (since retired) executive director of Family Councils Ontario recommended we consider removing you from the home." Margaret said she had never spoken about her situation to the FCO, which is mandated to support family councils in long-term care.
Samantha Peck has been an FCO leader for a decade and is currently its executive director. In an interview, Peck told the Star she was involved in all discussions about serious issues and the ban was never raised nor could she find any communication about a ban. I can't picture any scenario in which that would have taken place," Peck said. It's a legal issue that would not involve FCO, she added.
Margaret's lawyer, Feldstein, sent details of the ban to the long-term care ministry, the Central Local Health Integration Network, the labour ministry and politicians. In October 2019, two months after the ban began, Feldstein filed a complaint with Ontario's Patient Ombudsman.
It is imperative that family caregivers are able to express concerns about the care of their loved ones and other residents," Feldstein wrote to the ombud's office. There should be no reprisal for advocacy. Markhaven's conduct has been shocking."
Margaret said the Patient Ombudsman's office promised to look into her case, but there were several delays and changes in staff handling her file. She called the Ontario Ombudsman seeking help.
In an email to the Star, the Patient Ombudsman's office said visitor restrictions are a common complaint" in health care. The ombud's office said it cannot comment on individual cases but noted there are almost always two sides to a complaint" and resolutions are best achieved collaboratively."
There would be no resolution for Margaret and Wayne.
By the early fall of 2021, Wayne was declining.
In his final days, he grew sick. On Nov. 15, at roughly 7 a.m., Margaret said the home called to say he should go to the hospital. She agreed. A few minutes later, the home called back. Wayne had died.
Two days later, a senior investigator from the Patient Ombudsman's office sent a letter to Tucker, the chair of Markhaven's board of directors, detailing management's refusal to take its telephone calls and overall lack of engagement" in the ombud's resolution process.
Margaret, the ombud's office said, feels the allegations are essentially retaliation for her bringing issues to the attention of the staff and home leadership." The majority of complaints handled by the ombudsman's office, the letter said, are resolved quickly. In future, (the) Patient Ombudsman expects better participation."
In the end, Margaret realized the long-term-care system had no option to appeal or review a ban.
I always wonder how Wayne felt. I was with him for hours every day and then one day, I was gone."
Moira Welsh is a Toronto-based investigative reporter for the Star. Follow her on Twitter: @moirawelsh