Dot Finnerty turned 100 on April 5. Her daughter, Brenda Brophy, took her out of the Victoria care home where she was living after being told she could not go in to see her mom unless she was "actively dying."

Image Credit: SUBMITTED/Brenda Brophy

It’s bad enough to be kept away from loved ones who are locked down in B.C. long term care homes because of COVID-19 and suffering from a lack of contact, but many families are frustrated by the process of applying for essential visitor status and growing speculation that care homes have a vested interest in keeping them out.

While B.C. has created a process for allowing at least one family member into these homes, the process itself often relies on the managers of those facilities to send the application. One woman who spoke to iNFOnews.ca she never got to see it or any proof that it was even sent.

“There’s no transparency,” one woman told iNFOnews.ca. “I know my application wasn’t sent in.”

Many residents of long term care homes are locked in their own rooms without even being allowed to interact with other residents. Before COVID-19 they had family members who not only visited but helped feed and clean them and, most importantly, interact with them to help keep their minds focused and maintain their will to live.

“My mother... has said she would prefer to risk COVID-19 infection and death than to live any longer in these conditions,” she wrote in a letter to the provincial government.

“I have nothing,” she quotes her mother as saying. “I just lay here doing nothing. I ask myself ‘Why am I being punished like this? What did I do to deserve this?’ But I know I didn’t do anything. They keep us locked up and deprive us of our rights.”

Another woman in another health region in B.C. is going through a similar situation, facing a system that is secretive and, possibly, even deliberately keeping families away.

“I am dealing with two (care homes),” she said in an email to iNFOnews.ca. “They are proud and brag that they haven’t let anyone in. They even threatened I should move my loved one. Prisoners have more rights.”

She says that with some authority because she has a relative in prison who isn’t locked down in solitary confinement because of COVID-19.

A big part of the stress these women – and many others – are under is that there is a system in place that basically excludes them.

Provincial Health Officer Dr. Bonnie Henry has laid out rules for allowing essential visitors into care homes. They are quite broad and include the need to feed, medicate or communicate on behalf of residents.

But the process for applying and getting accepted is the real problem.

While each care home can handle the process differently, in these three cases and many others, applications for essential visitor status can only be made by the facility manager.

The family members don’t get a copy of the application. They can’t even be sure it’s filed with the health authority and, if it was filed, they don't know if the facility manager recommended visitor status be granted or not.

Then they get an answer back, without explanation, saying they’re denied status. 

Dr. Henry, in answer to a question from iNFOnews.ca at her COVID-19 briefing last week, said people can appeal for help to the Patient Care Quality Office set up in every health region.

Brenda Brophy did that and was told she could become an essential visitor only if her mother was “actively dying.”

“That's when I said she's 100 and is wasting away so how is she not actively dying?” she wrote in an email. ”So this was the only process; request via the facility, be denied, go to the PCQO and then be told this?”

Brophy, who lives in Victoria and helped organize a rally earlier this month protesting the lockdown in long term care, was willing to be identified only because she has taken her mother out of the Mount St. Mary Hospital and into her own home.

She’s also an administrator on the Families for Change – Stories from Longterm Care Facebook group.

Brophy asked a member of the care home board to help. That woman wrote back that there was nothing she could do and copied the facility manager.

“That's when my virtual visits stopped,” Brophy wrote. “I didn't get Friday reports on my mom's weight, food intake or activities. Basically I was shut down and felt the full blow of retaliation.”

Her situation is a striking example of why so many others don't want to be identified while they fight to see their loved ones.

These cases are representative of the dozens or even hundreds of people, often working on their own, struggling to understand and use the system. They’re also dealing with three different health regions out of the five in B.C.

"Some of it has to do with the actual home itself and how it interprets the guidance that’s been provided by the provincial government,” Jennifer Stewart, manager for advocacy and education for the Alzheimer’s Society of B.C., told iNFOnews.ca.

About two thirds for the 34,000 residents in long term care homes in B.C. suffer from some form of dementia, she said.

“Our position really is that family members are essential,” Stewart said. “They’re essential to give dementia care and to be part of that circle of care around people with dementia.”

Her society works with family members who are trying to get either essential or social visitor status. That means educating them on how to approach the care home operators in a positive and cooperative manner.

“There’s a lot of confusion right now,” Stewart said. “We’re hoping for some more clarity as we move forward. We’re at the point right now where we’re hearing from families, trying to understand their experiences and trying to figure out how stakeholders can really come together.”

But some families can’t wait. They’re seeing their loved ones fade away and fear them dying isolated and alone.

Some have taken their loved ones home, but few are equipped to do that, especially with dementia sufferers.

READ MORE: B.C. care aide forced to quit to care for her own mother after steep decline under COVID lockdown

Seniors Advocate Isobel Mackenzie is currently compiling more than 13,000 questionnaires she put out last month and plans to make public before the end of the month. That will likely provide data on how much suffering is happening in these homes as Dr. Henry tries to protect residents from COVID-19 and how different facilities are handling the rules she has laid down.

READ MORE: If B.C. finally changes visitation rules in long term care homes, it may come from this survey

And Dr. Henry’s fears of outbreaks are real as there are about 15 facilities with active cases either among staff or residents and more than 150 residents have died since the pandemic started in January.

“This virus is very pernicious and when it gets into that environment it can spread so rapidly,” Dr. Henry said last week.

On top of that, flu and influenza season is starting. Long term care homes are often locked down when there are outbreaks of those viruses.

“So it’s trying to find some balance in that risk and we are working our way through it and it’s very hard, I know,” Dr. Henry said.

Stewart is encouraging anyone who needs help dealing with dementia to call the Alzheimer’s help line at 1-800-936-6033  or go online here.

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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