Fear of retaliation in care homes is a very real thing

Here’s something we don’t talk about enough: the fear people have that if they complain about how their loved one in a nursing home is treated, the treatment will only get worse.

My mother lives in a retirement home. Many of my friends also have parents who rely on strangers for some aspect of their care. And in conversations we’ve had, it is quite common to hear someone say, “Of course we don’t want to complain, because it might backfire.”

Human nature is what it is. No one likes criticism. So, if you complain that your father’s meals are never hot or that your aunt’s clothes are always soiled, you are never sure what the reaction will be. One person might take a complaint in stride and try to do better, while another person might feel affronted and lash out in some way — perhaps by deliberately treating your loved one poorly.

It’s a crap shoot for seniors in care and their families, and it’s a troubling one.

In 2023, the Long Term Care Community Coalition in the United States examined this dilemma in a report entitled “‘They Make You Pay’: How Fear of Retaliation Silences Residents in America’s Nursing Homes.”

“Fear of retaliation is a pervasive problem that results in emotional, psychological, and physical harm to vulnerable and frail residents,” the report says. “In far too many U.S. nursing homes, retaliation is a tool to scare and muzzle residents. Unfortunately, this phenomenon has been largely overlooked in policy and in academic literature … We hope that heightening awareness of fear of retaliation can result in real changes in policy, practice, and enforcement actions.”

That fear is a pervasive problem in Canada as well, whether it’s baseless or grounded in reality. You can find discussions about it in Reddit threads and on Facebook pages, and the repercussions have been reported in the news.

In December 2024, for example, CBC reported that there were over 100 cases at that time in Ontario in which family members had been banned from their loved one’s care homes after they had complained about how their relatives were being treated.

I don’t worry about such extreme reactions to complaints where my mother lives, as the management there has always been understanding and responsive to my concerns, but I do worry that some action of mine could result in a negative reaction for my mother on a more personal level, and I think that’s something many adult children with parents in care struggle with.

You imagine your parent’s request for assistance in getting back to their room being ignored; their stained clothing going unchanged; dead hearing aid batteries not being replaced. The mind reels with the many worrying ways their needs could be neglected by someone with an axe to grind, particularly if your parent is totally vulnerable.

This week I was sorting out clothes in my mother’s closet when I heard a member of the care staff in the lobby yelling at her not to sit somewhere. Now, the yelling was understandable, as Mom is hard of hearing, so I did not mistake it for anger, but still I went to see what was happening.

It turns out that Mom had been about to sit in one of the new plush chairs that were part of a recent renovation, but I was told she was not allowed to sit in those — nor was anyone else who “might have an accident.” She was only permitted to sit on the leather sofa.

The incident was very upsetting for me and confusing for my mother. I’m sure she could not understand why she wasn’t allowed to sit in an empty chair, and I’m not sure how someone with advanced Alzheimer’s can be expected to remember which seats are not for their use. I especially did not appreciate hearing my gentle, loving mother being treated like a muddy dog about to soil someone’s couch.

But should I complain about some of the people my mother depends on for her every need?

My husband and I discussed the pros and cons and I decided to sleep on it before making a decision. At 4 a.m. I lay awake with my mind racing, the scenario replaying in a seemingly endless loop.

By 9:30 a.m. I had written an email to senior management at the home and hit send.

I recalled the words of a former administrator at the facility, who was used to my occasional drop-ins at his office to discuss some concern or another.

When I said one day that I wasn’t trying to be a bother, he said, “Don’t ever stop advocating for your mother, because if her family doesn’t, no one else will.”

It was good advice. My mother deserves to be treated with dignity and compassion, not shooed away from furniture like a stray animal. And I will fight for her, just as I know she would have always fought for me.

Pam Frampton lives in St. John’s.

Email: pamelajframpton@gmail.com