Families with loved ones in long-term care urged to protect privacy while looking for support

Long term shake a hand

Some families turning to Facebook groups in search of emotional support

In the middle of a pandemic that’s disproportionately affecting older Canadians, many with loved ones in long-term care who can no longer provide daily support are finding themselves frustrated and exhausted.

However, as some look for help through social media or other unofficial channels, Canada’s largest advocacy association for older Canadians is reminding people to remain vigilant with their private medical records. 

“No one should ever be asked to part with their own private medical records unless there is a very substantiated reason,” said Bill VanGorder, a chief policy officer with the Canadian Association for Retired Persons (CARP).

He says the only people who should be gaining access to confidential medical records are trained professionals — for example those providing direct health care. 

VanGorder says prior to the pandemic many families were at long-term care homes multiple times a week helping to feed, bathe and otherwise support their loved ones. Even now as COVID restrictions on visitations lift somewhat, families are not always getting access. 

“They’re unable to make the contact they used to have,” he said. “They’re unable to have the face-to-face opportunities and this frustrates them to the point that often they’re trying to make good decisions.”

Some looking for support online

Many families have sought help through Facebook groups and other social media channels.

One Bracebridge. Ont. woman told CBC Toronto she started offering help after becoming sick and tired of seeing seniors inside denied access to their relatives.

“Those residents in long term care are literally prisoners. They’re being held hostage, they’re being denied access to their relatives,” Julie Richard said.

As of early August, Richard said she’s offering emotional support to at least 20 families.

“I’m not a lawyer. I’m not a professional advocate. I’m not affiliated with any group. I am just a private citizen who … wants to help,” Richard said. 

Province working on easing restrictions

As Ontario’s COVID-19 case numbers have declined overall, so have the number of outbreaks at long-term care homes. A single case qualifies as an outbreak.

On August 12, there were 16 homes with an outbreak. There have been 315 homes that once had outbreaks that have since been resolved, but not before 1,847 residents died.

In a statement to CBC News, Ministry of Long-Term Care spokesperson Gillian Sloggett said resident and staff safety is its “number one priority.”

“The early decision to restrict visits to essential visitors only was not made lightly, as we know the tremendous hardship it posed for family,” Sloggett said.

The ministry’s goal is to “remove restrictions as soon as it is safe and feasible to do so,” the statement added.

Doctors and other medical professionals have been warning about the ill-effects of the pandemic, not just from the novel coronavirus but from the “isolation and loneliness” that can have devastating impacts on a senior’s deteriorating condition.

Families hoping for more access

Sheryl Davidson, one woman who connected with Richard online, was recently able to see her 92-year-old mother, Dorothy Snowden, for the first time in months last week. What she saw during a dining hall visit brought her to tears. 

“I was putting cream on her arms and her legs and it’s just skin right on top of bones, it’s heartbreaking. I held it together until I got outside and I just lost it,” Davidson said. “It’s just like she’s already gone, it’s horrible.” 

During the pandemic, Davidson said her mom lost some 15 pounds.

Prior to the pandemic, Davidson was responsible for her mom’s dental hygiene, hair and foot care, eating and more, and she’s hoping that can resume. 

Davidson says she believes everyone at the Cobourg home where her mom lives is doing their best, but after months of dealing with COVID-19 the workers are overwhelmed. 

She’s hoping the province will let her back in to help. 

“It’s time now. All these seniors need to see their family,” she said.