With day programs and other activities for people living with disabilities on hold indefinitely due to the COVID-19 pandemic, a White Rock caregiver says finding ways to fill the gaps left in the lives of those who depend on routine for balance is testing resolve.
“Under normal circumstances, people are understaffed, overworked,” Zi Paris said.
“Now… it’s like we’re under siege. I’m so exhausted.”
Paris has been a caregiver for Phil Paras for the past nine years, as a home-share provider for Community Living B.C. According to information on the CLBC website, the program is “a flexible residential option where an adult with a developmental disability shares a home with someone contracted to provide support.”
Typically, Paras, who is in his mid-50s, is involved in an array of afternoon and evening activities and programs throughout the week, through organizations including Semiahmoo House Society. The outings provide a routine, and are things Paras looks forward to, Paris said.
They also provide Paris with some much-needed respite – downtime, and an opportunity to recharge.
Since restrictions imposed due to the pandemic took effect in mid-March, however, the opportunities afforded to both of the men – and so many others – have “all been shut down.”
While Paris is able to go for short walks or other activities on his own from time to time, and has friends he can “blow off steam” to, he said not all caregivers are in the same position.
Adding to the challenge is that Paras only understands “kind of peripherally” why his regular outings have stopped.
“He kind of gets that this virus is this bug floating around and people are afraid of it. But he doesn’t really get it, no.”
In addition to an increased focus on household chores, Paris has boosted the time that the pair puts into cleaning up around the community. Before the pandemic, they would go out two or three times a week to spend an hour clearing litter from the roadsides and various parking lots around the community, and even travelled to the Cloverdale HandyDart lot once a week.
Now, the activity is a daily one; an effort “to turn a difficult situation into some sort of positive.”
“I figured let’s just go out a few times a week… and do some work,” Paris explained.
“It improves the neighbourhood a little bit and it gives (Paras) something concrete to focus on for an hour or so a day and then he’s kind of fine. It settles him a bit, and it gives him something meaningful to do, too.”
One local resident who spotted the pair at work a few weeks ago and spoke to Paris about what they were up to and why, told Peace Arch News that the efforts of such caregivers deserve to be included in the applause that’s given every evening to frontline workers.
“Because the programs have been suspended during the COVID-19 crisis, caregivers have been left to look after the disadvantaged people on their own, without respite,” Elizabeth Wallace said by email.
“The burden is heavy, and the compensation is low. But Zi and others like him have willingly taken on the responsibility of sheltering the most vulnerable. The nightly 7 pm applause should surely be for these caregivers too.”
Wallace also questioned what has been put in place to ensure Paras and others who need support continue to be “cared for and kept safe and active.”
Doug Tennant, chief executive officer of UNITI – a partnership of organizations that work with and advocate for people with disabilities – acknowledged that one-to-one support through Semiahmoo House Society has been significantly reduced due to the pandemic.
While thoughts are starting to drift towards the possibility of “reactivation,” Tennant said for now, face-to-face support is only being maintained for a select few – those who need it “to survive.”
“Desperate need,” he noted, “is different during COVID-19.”
Tennant agreed that home-share providers and families who are now providing 24/7 support deserve “kudos.”
He named an online campus – anticipated to launch this coming week – and online yoga as among “innovative” steps that have been taken at SHS to help keep supported individuals connected.
There’s also daily online meetings where people can “drop in and say hi.”
Alexander Magnussen, who co-founded the Self Advocate Leadership Network, said as a CLBC employee, he couldn’t comment on supports in place for people with disabilities, but did say he personally feels “very supported” during the pandemic.
“In the sense that I’m getting all I need with my service providers.”
Magnussen said it’s important for people to realize that while those living with disabilities may experience the world differently, but they are also “in this pandemic just like everyone else.”
“We’re in the trenches suffering, like everyone else,” he said.
Magnussen named an appreciation of, and desire for, increased contact with family members as among “silver linings” he’s seen emerging from the pandemic.
Paris, meanwhile, said he is “walking a razor’s edge” – holding on to the hope that the current situation is temporary.
“Nobody really knows what is going to be happening two or three months from now. That’s the thing,” he said.
“I have to hold myself together.
“My fear is… something’s going to fall apart somewhere – I think it’s kind of inevitable.”