By Katlyn Streilein
Dave Neufeld’s children arranged mementos near his casket: his fishing rod, his cap, and his iPad.
During his final years, Dave’s tablet allowed him to see the faces of family all across the country. It was invaluable to his daughter, Angela Neufeld of Winnipeg, and became a lifeline once the pandemic struck. August was the last time public health restrictions permitted Angela to make the 1000-kilometre road trip to visit her father.
When the phone rang in the early morning hours of Saturday, Jan. 15, 2021, Angela knew it was bad news. She had called Dave before bed like she normally does, and he was upset. He’d experienced spells of weakness and disorientation throughout the day.
Dave died in his sleep at the age of 91. “They figure his heart just gave out,” Angela says.
Dave’s family buried him less than a mile from his birthplace in the Town of Didsbury, Alta., a small city of 5,000 people nestled in Mountain View County. He lived the last chapter of his life in a supportive housing residence an hour-long drive from Calgary. “It was very full-circle,” Angela says.
Pandemic restrictions allowed for an in-person funeral—a grieving ritual denied to so many as of late. The Neufelds congregated at Bergthal Mennonite Church, one of many modest-sized chapels punctuating the foothills.
“Pretty much my entire part of the eulogy was on the video chats that we had, and how much that allowed us to connect in the last few years,” she says.
Angela and Dave were one family out of thousands across Canada grappling to stay connected with their loved ones living in long-term care as the COVID-19 pandemic raged on. Many families have had to adjust how they communicate with one another. The Neufelds doubled down on their long-distance chats, while other families had their interactions upended or severed altogether.
There are more barriers to visitations than solutions. Safe visiting infrastructure, limited access to technology, and people’s cognitive and physical abilities have shaped interactions. Many families have advocated for the chance to see loved ones, many of whom have had their voices quieted—but not silenced—by dementia, Alzheimer’s disease, and a litany of other conditions.
Angela is quick to recall the exact day her father had his stroke: Dec. 12, 2017. Despite his stroke and advanced age, Dave was able to navigate their e-visits independently. She helped him troubleshoot glitches once in a while or had an aid come by to support him, but she says it was rare.
To make the most of the time left with one another, many families opt for video calls with family members living in personal care homes (PCHs). No one is guaranteed time—time with family, time to be in good health. The pandemic has reframed how many of us consider time, as dilated months and milestones pull us onward. For many, as we get older, the pendulum swings faster and louder, amplified further still by the threat of COVID-19.
Janet Miller knows the 15-minute video calls she’s allotted each week with her mom, 79-year-old Lillian Skabar, are precious.
A notification from Donwood Manor Personal Care Home pops up on Janet’s phone. She sits on a plush teal sofa in her East Kildonan living room and hushes her two energetic, rotund bulldogs. When she answers this incoming video call, it will be the last time she can see her mother for another seven days. If she’s lucky, there’ll be an open visitation slot after hers, carving out another 15 minutes. A recreation staff member stands out of frame. She holds the care home’s iPad up to meet Lillian’s gaze. Janet asks her mother if she’s comfortable, if she’s been eating well—reassuring her multiple times they’ll be together again soon.
They’ve been communicating this way since November.
“It’s very easy to connect when you’re in front of her,” Janet says. “She will touch your hands. You can smile, and she’ll smile. But when you’re on a video chat, she’s really more interested in the person holding the phone.”
It’s difficult to communicate with her mother this way, Janet says. For six and a half years, Janet dropped by to see her mother on the way home from her job in HR at Red River College. Until the pandemic began. These meetings were Janet’s chance to fill her mom in on the small struggles and triumphs of the day.
Janet reckons her mother is feeling the fallout of being cut off from her. “I just don’t think she would be able to articulate what it is,” she says.
The novel coronavirus causes swift and merciless pulmonary failure in its victims. The elderly are among the most vulnerable to the disease.
Over half of Winnipeg’s PCHs have experienced an outbreak since the pandemic began. The province’s PCH case count has surpassed 2,000, with deaths climbing near 200. Horror stories, like that out of Maples Long Term Care Home and Parkview Place—which saw a combined total of 84 residents killed—stained the high-water mark of our province’s failed contagion efforts.
The spike in cases caused many PCHs to restrict or eliminate in-person visits to lessen the chance of having the virus slip in and cause mayhem. With these changes came a new adversary: isolation. Cut off from the outside—and often from other wings and floors—some residents interact only with care home staff. And many PCH staff are spread thin between multitudes of patients to begin with.
Until the beginning of December, Dave was able to mask up and meet with his coffee buddies. These hangouts were important to him since many of the home’s residents have different cognitive abilities. “There’s not always that stimulus,” Angela says.
Lillian’s residence is a non-profit care home operating under the Winnipeg Regional Health Authority (WRHA), which oversees 38 PCHs in Winnipeg. Janet says care home recreation staff seem to be doing their best to juggle appointments to ensure everyone at the 121-bed facility gets a time slot.
Dr. Michelle Porter, director of the University of Manitoba Centre on Aging, says one recreation staff member at a local PCH likened the process of arranging visits to working in a call centre. She’s heard dispatches from some PCHs that nearly all staff that would typically devote their time to recreation have pivoted to arranging calls and supporting people through visits.
“Some of the family members are older adults themselves. Many of these things would have been brand new. Not everyone would’ve known how to do FaceTime or Zoom,” Dr. Porter says.
Christmas brought visitation logistics to a boil.
“When (Dave) asked if I was coming home…I was dreading the question,” Angela says. Unable to travel to visit her father this Christmas, she got to work setting up a decorating night for the two of them via video call. She bought a small tree, threw on a holiday soundtrack, and patched Dave in. “He watched me decorate the tree. I was like, ‘Did I put it in the right spot, Dad? How does that look?’”
Angela gets choked up when she talks about the video calls. Memories of their shared screen time are bittersweet, considering the chats were a substitute for in-person visits in the months leading up to Dave’s death. Sometimes she changes the subject to happier memories. “He was growing a beard, and he was pretty darn proud of that beard,” she laughs. “Every video chat he would show off how much it was growing.”
Angela is an elementary school music teacher and a musician. She wanted to do something special for the residents and her father for Christmas. She contacted the staff—whom she describes as a blessing—to set up a sing-along broadcast from her living room. Dave recorded the performance on his iPad.
“Usually, if I’m there in person, I’ll have a little sing-along or do some playing myself. I used to do little concerts for my parents because they paid for those lessons,” she laughs.
The holiday bill included an impromptu virtual family reunion, which normally took place in a church in the country. Angela and her siblings brought together more than 20 relatives for the event, knowing this could be Dave’s last Christmas.
For Janet Miller, this was the first time she missed a Christmas with her mom in 47 years. “I’m thankful (the care home) took the steps they did to keep the residents safe, but it’s hard, it’s very hard,” she says.
Some people are asking at what cost are we protecting the elderly? Why aren’t those in power doing more to meet residents’ psychological needs amid the turmoil?
Less than one kilometre away, Laura Rollins, who didn’t want her real name used because she works in the health care field, saw how isolation from the PCH environment affected her mother’s mental health. Laura moved her back home just in time for the holidays. She made this decision based on what she could live with, Laura says.
“She would have died from loneliness,” Laura says, adding she saw her mother grow despondent and robotic while living in care for less than one year. Her decline culminated in crying fits over the phone.
“My thought was, ‘I got to take her out. I just have to take her out,’” she says. “I know she wasn’t getting the 100 per cent care she deserves. It’s a huge sacrifice on my part, but it’s okay. It’s my mom, right?”
Laura believes her mother was forced to stay in her suite from Nov. 10 onward due to a COVID-19 outbreak among staff members. The two never got to see each other during these five weeks. Despite her mother’s seclusion, Laura’s health care background clued her in to the fact this was one of Winnipeg’s better care homes.
In 2015, Laura had moved back in with her ailing parents in the house they’d lived in since the year of the moon landing. Laura stepped up to care for them, knowing she could provide better care than the PCH system. She says a nurse at her mother’s PCH admitted staff could only meeting the residents’ basic needs during this time. Before restrictions clamped down, Laura would bathe her mother and swap out her unchanged clothing during visits.
“Feeding is not the only necessity,” Laura says.
Laura’s father died May 25, 2020, at the age of 84. Eventually, Laura’s mother required more support. Laura began to suffer from caregiver burnout. Together, they decided she would move into a care home in Old Kildonan. “That was probably the hardest decision of my life ‘cause you’re sending her during COVID-19,” she says.
Laura was still living in her mother’s home when the PCH started offering FaceTime calls. She decided this format work with her mother’s dementia. Seeing her old house on video upset her, so Laura opted for phone calls, which staff facilitated on their personal cellphones over speakerphone.
“Because I know her so well, I can cheer her up in a three to five-minute phone call,” Laura says, adding it wasn’t uncommon to call the PCH three days in a row and be met with an automated message prompting her to try again later.
“You’re just imagining your loved one sitting there in isolation, not knowing why,” she says.
Laura makes a point of reminding her mother about the details of her life: who has passed, where she is, and what’s going on in the world at large. She acts as a grounder in the currents of her mother’s dementia. Laura says her mom’s behaviour is “night and day” compared to when she lived in the PCH. She’s regained some mobility and is spending quality time with their Alaskan malamute.
Not everyone has the same opportunity, medical background, or ability to care for family members the way Laura does. She’s familiar with infectious disease control, the minutiae of her mother’s health conditions, and the medication regiment needed to treat them. Laura says she’ll likely have to move her mother back into a PCH once more people get vaccinated and she has to go back to work.
“I think if they met those few things … If I could have talked to her daily, and we could have seen her through the window, she’d still be in care because I need my job—I love my job—and it really is a financial hardship,” she says.
Laura has been signing petitions online to advocate for seniors. “These people do need better care, and it should be proper continuity of care. There’s no reason the homes can’t be the same; the hospitals are the same,” Laura says.
One way for this to happen would be if all PCHs transitioned from a mixture of public and private ownership to public only. This way, each facility would operate under identical protocols and regulations. According to the Canadian Institute for Health Information, 57 per cent of Manitoba’s PCHs are publicly owned, which is 11 per cent higher than the national average.
Some advocate groups, including the Canadian Association for Long Term Care, want PCHs brought under the Canada Health Act. This change would see federal funding for PCHs, currently paid for almost entirely in full by individual provinces. The idea is similar to the public vs. private funding model. Consistent national funding and policies would hopefully lead to better quality care.
Laura, like many other Manitobans, is calling for higher staff to resident ratios. Along with this, she hopes to see an emphasis on meeting residents’ emotional and mental needs, not just basic physical supports.
The arbitrary nature of her mother’s care and visitation options disturbed Laura. Residents at her mother’s PCH were relegated to their rooms, albeit for their safety. Window visits were only possible for residents living adjacent to the parking lot. Her mother’s room wasn’t on that side. Laura thinks all of these factors accelerated her mental decline.
What does it say about our province’s PCHs, that for many, the main thing that makes life enjoyable or worth living is the connection to the outside? Not all residents at PCHs have family members who visit.
“For those individuals, it’s really hard to say how all of this has impacted them because who has seen them? There could be some really major impacts on individuals who don’t have any contact with the outside world,” says Dr. Porter, who researches mental and physical wellness in older adults.
According to Dr. Porter, the fact that many residents have been restricted to their rooms for weeks, even months, is a part of the PCH narrative often overlooked. She says this could negatively impact individuals’ physical wellness, which influences key functions like sleep and appetite.
“For a lot of people, thinking that this is going to be how they live out the remainder of their life—without any connection—that can create a lot of despair,” she says. She added that changes to visitation routines could cause confusion and negative feelings toward families if residents can’t understand why no one’s coming to see them. This is especially true with folks living with Alzheimer’s disease and dementia.
“In some ways, it’s been amazing how resilient many of the residents have been in being able to survive this,” Dr. Porter says.
Visitation regulations in personal care homes are inconsistent. In June 2020, the province announced a $17.9 million contract with PCL to design and build over 100 all-season visitation shelters. This project cranked the pandemic’s dystopian dial to full volume. It has come under scrutiny as the vaccine breaches the horizon, which would render the pods useless for their original purpose. According to the Winnipeg Free Press, the company retrofitted 94 of the shelters.
Some PCHs and supportive residences for aging adults have created visitation pods using what space and resources they have at their disposal. Jocelyn Thorvaldson runs Thorvaldson Care Center—a PCH founded by her grandfather six decades ago.
She’s used her passion for live music to turn an extra bathroom into a visitation space. Jocelyn installed a door with a floor-length window and plastic curtains to hide the sink and toilet. Jocelyn brought in sound equipment from her rock duo, installing a microphone and speaker on each side of the door.
Jocelyn set up the system at the beginning of December so families could book visits for Christmas. The care centre brought on extra staff for the holidays to get as many families in to see their loved ones as possible.
“We were doing video chats with FaceTime and Facebook. The feedback we’ve been getting is phenomenal, really just phenomenal,” she says. “It’s great. It’s better than nothing, but it’s nothing like seeing your relative face-to-face, even if it’s behind glass.”
Angela began FaceTime meetings with her father three years ago. For a while, he lived just down the hall from his wife (Angela’s mother) in the same facility. Angela says she bought the tablet for Dave with the idea of keeping an eye on her mother, who lived with dementia leading up to her death in 2019.
“Because of that iPad, I didn’t feel like I hadn’t seen him, even though I hadn’t physically been in his presence since August,” she says. “I may have not been playing games with him like I would have in person, but I did feel like I was spending time with him.”
Dave lived a quiet life and enjoyed being outside. In his final years, from the comfort of his recliner, he would gaze into the pastoral scene beyond his picture window, spotting foxes and cows near an old barn in the field. Angela recalls him being a big sunset guy. He would sit for hours watching the sky melt into the darkness. Angela shares in that love of the outdoors. Her solo camping trips often brought her out to Grand Beach Provincial Park.
However, she wasn’t alone. Not really.
“In the evenings, I would call him up, and we would watch the sunset together. We’d sit by the campfire, and I would put (the phone), so it was facing the fire, so we could watch the fire and pretend he was out camping.”
Presently, needles prick the biceps of PCH residents across the province—administering life-saving antibodies. It remains to be seen whether the recently exposed fault lines in our long-term care system will have staying power in the collective consciousness. Aging is inevitable; it’s out of our control. But we can control how we choose to support people living in care.