Daughter pulled mother from Winnipeg care home, but a year later a difficult decision looms

There's been a question on Lois Coleman Neufeld's mind since she made the life-changing decision to pull her mother out of a Winnipeg care home a year ago.

What will she do if caring for her mother becomes too muchto handle?

At first, she says, the choice she made in the pandemic's early days seemed obvious. For someone like her mom, Joy, who has dementia, it was clear how devastating the visitor restrictions that rolled into care homes at the time would be.

Over those next weeks and months last spring, the decision paid off: Joy, 92, went from being stuck in her room at Parkview Place to walking more than a kilometre with her daughter. But more recently,she has started to slow down. Another stroke on New Year's Day set her back even further.

But as COVID-19 swept through Manitoba's care homes, infecting more than 1,500 residents including 120 cases and 30 deaths at Parkview Place sending her mom back wasn't an option Coleman Neufeld considered.

Now, sheand her husband are having conversations about what they'll do if a day comes when they realize they can't handle it anymore.

What if Joy's needs increase beyond what they can give her? If even with the help they get from home care workers, friends and people at their church stops being enough? What if Coleman Neufeld, who's on long-term disability, finds her own health deteriorating?

"That's a hard, hard thing to think about," she said.

"But I think it's important, because it helps [my] mom understand that we aren't perfect and that we can't do everything. And it helps me relax a bit to say, 'OK, I don't need to think about it every day, whether I can care for her. But when it reaches this point, then we're going to have to reconsider.'"

Michelle Porter, director of the University of Manitoba's Centre on Aging, says it's crucial for people considering pulling their loved ones out of long-term care to have that kindof conversation.

And while it can be rewarding to become someone's caregiver, she says, it's also important to consider the toll that job can take, especially because people often live in care homes because they have needs they can't manage on their own.

"Caregiving can be a really meaningful experience for a lot of people," Porter said. "But it can also be very stressful. It can be physically demanding. It can be psychologically demanding."

100 people pulled from care homes during pandemic

Numbers from some of Manitoba's health regions show Coleman Neufeld was far from the only person who decided to pull family from a care homeduring the pandemic.

According to data provided by Shared Health, there were more than 100 people discharged between March 1, 2020 and March 10, 2021.

But incomplete tracking means there's no way to know whether thatnumber is accurate.

The Winnipeg Health region had 83 of those cases, while the Southern Health region had 17.

The Northern health region had 10 people discharged since the start of 2020.

And neither the Prairie Mountain Health region nor the Interlake-Eastern Health region tracks those discharges at all.

There's also no way to know whether the number of people pulled from care homes during the pandemic marks a change from previous years.

That's because even the health regions that reported discharges only started tabulating those numbers last March, a spokesperson for Shared Health said.

More long-term care resources needed: advocate

It's been encouraging to see people taking their family members' well-being into their own hands during the pandemic, says Laura Tamblyn Watts, CEO of CanAge, a national seniors advocacy group.

"It really speaks to how closely people feel connected to many of [the] older adults in their lives. As we move forward, we want to make sure that we keep those connections," she said.

But for that to happen, there needs to be more support for caregivers, such as increased access to programs such as home care that can keep people living on their own, Tamblyn Watts says.

Coleman Neufeldsays she plans to keep her mom living at home until therecomes a time where her mom's needs exceed what shecan provide.

"It would have to be pretty, pretty serious if we were going to send her to a care home now," she said.

But once visitor restrictions are lifted and she knows she can see her mom regularly, thatcould be a different story.

For now, Coleman Neufeldis focusing on the moments they get to share, including listening to historical fiction audio books together and eating pork and sauerkraut dinners some of Joy's favourites.

"[The question] is not just, 'How do we survive this?'" she said.

"It's, 'How do we find joy in the moment? How do we find joy doing this?' Because if we can't find joy, what's the point?"