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“I just hate being this afraid, even after my mother’s gone.”

Those are the words of a woman whose mother died more than two years ago while living in a long term care home in B.C.

After sharing her memories about her experiences with the home her mother lived in and about being shunned by staff when she complained about her mother’s treatment, she said she couldn’t lend her name and voice to our story. She realized that if she was identified, friends who still had family living in that home might face retaliation.

“You can tell right there, my mother’s not even alive, and I can’t speak freely to you,” she said. “This is how people are being silenced. I think you probably really get the sense of the fear we all have, when you’ve talked to so many people. It’s very pervasive.”

Since January, iNFOnews.ca has been looking into long-term care homes and the many struggles families are facing across the province, including Vancouver Island, the Kootenays, the lower mainland, the Okanagan and Thompson regions, as well as others.

In many cases, we encountered a familiar trend of family, residents or even staff members who wanted to speak up but couldn’t because they feared retaliation. We agreed to protect their identities.

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“In our case, it was the fear of being barred from the facility,” this woman said. “It was our biggest motivation for not filing a complaint. No other complaints had ever been followed up on that we knew of. There’s no point in going higher and making the relationship with the facility even worse if nothing is going to get done.”

Karl Hardt, a senior communications consultant with Interior Health, said in his 10 years in the job, he’s never heard of a complaint that hadn’t been followed up on.

That could be because complaints are stopped inside the facilities.

But, it’s not always the case.

“I don’t know how many times I met with the guy from Interior Health and was told 'it's fine,'” Margaret Wills told iNFOnews.ca. Her mother died at Joseph Creek Care Village last year.

Janis Caldwell, whose mother also died there last year, said she went to Interior Health and her MLA with her concerns but nothing changed. Both raised concerns about short staffing at the facility.

In one case, iNFOnews.ca was told that a resident who filed a complaint on-line had some of her privileges taken away, including important medical assistance.

“Basically, it was a spanking,” we were told.

Some of the issues in long-term care homes, including retaliation by staff or managers, have been going on for years.

“The hospice lady was the one that said to me, ‘I can tell you off the record that 50 per cent of the people in there, whether they’re staff people or whether they’re family members or whether they’re residents, fear repercussions,’” one woman told iNFOnews.ca. “At the very onset of my problem in 2013, I had to send the general manager a letter saying... when somebody asks something or questions something, you become evasive. And now my (relative) is being mistreated. So, don’t take out how you feel about me on my (relative).’ This is very prevalent with family members, why they aren’t saying anything."

One of the problems is that there are no clear guidelines for family members who are often undergoing extreme stress when they have to put their father or mother into a care home.

“When someone goes into long term care, the family members are going in kind of blind,” said Kim Slater, president of the Vancouver Island Association of Family Councils. “There’s a huge learning curve. They don’t know what their entitlements are. They don’t know what opportunities they have to dialogue.”

The B.C. Ministry of Health states on its website that it “supports family and resident councils by stating that a licensee must provide an opportunity, at least annually, for persons in care and their parents or representatives, family members and contact persons to: Establish one or more councils or similar organizations to represent the interests of the persons in care, or their parents or representatives, family members and contact persons, or both.”

But, outside of Vancouver Island, the people iNFOnews.ca spoke to were either unaware of that regulation or felt such councils were useless.

One person who spoke to iNFOnews.ca said, in her mother’s care home, the family council was run by the facility manager who was the source of many of the problems and people were not allowed to complain during the meetings.

In some cases, relatives of residents form their own groups to offer support and help look out for each other’s family members when they visited, only to find staff preventing them from going elsewhere in the facility to do so.

“In British Columbia, in terms of protecting that collective voice of family councils there are, maybe, five lines of regulations that provide absolutely no real protection for family councils,” Slater said. “You can contrast that to Alberta. They have all kinds of regulatory language that protects the voice of family councils. They require, by statute, that facilities must dialogue with family councils, to respond to concerns and to listen to their ideas and so on. But in B.C., those kinds of things are only guidelines. Guidelines don’t have the weight of law behind them.”

Having a council speaking up on a generic issue can protect residents and relatives from retaliation, or the fear of retaliation.

One woman’s mother had a painful rash that wasn’t being properly treated. She found her mother, one evening, lying naked on her bed, “freezing cold and moaning and crying.”

She can’t prove that, or other neglect by staff, was deliberate and retaliatory.

“I hope it’s not because of what I said,” the daughter said. “I want to believe they’re understaffed and they’re unable to get to her.”

There’s often no way to know if that’s the case or there is direct and blatant retaliation.

Do you have a story to tell about retaliation, family councils or what’s going on in your long term care home? Let us know in the comment section below or send us an email.

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To contact a reporter for this story, email Rob Munro or call 250-808-0143 or email the editor. You can also submit photos, videos or news tips to the newsroom and be entered to win a monthly prize draw.

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