Tuesday, March 1, 2016

No Place Like Home

Every day, over 280 Local 501 members fill the homes of their developmentally disabled clients with love and caring

Remember watching The Wonderful World of Disney on Sunday nights when you were young? Chris Janzen remembers.

Chris is a resource program worker and steward at a home for developmentally disabled people in Abbotsford, BC.

“I was caring for an individual around my age, and I started singing the Walt Disney theme song to him,” says Chris. “He automatically just looked at me and began to sing the song too—not with words, but with his voice. I realized at that moment that we were sharing a touch point, because he probably watched that program with his family on Sunday nights too. In that moment, I briefly connected with his personality and his humanity, and we shared a common memory. That’s one of those valuable moments that you try to hold onto.”

It’s these valuable moments that make Chris and his fellow Local 501 members employed by Bethesda Christian Association love what they do. In providing care for individuals with varying degrees of disability, their work is not just a job—it’s a vocation.

“It’s the people,” says Angelika Ouellet, a resource program worker and steward who has worked at Bethesda’s north Kelowna home for over 20 years. “It’s never been about the money. It’s always been about the people. What we provide for them is huge: privacy, dignity, respect, and a home.”

Bethesda has been helping individuals with developmental disabilities and their families since 1971. Through its partnerships with BC Housing and Community Living British Columbia, two crown organizations that help the disabled and others, Bethesda has homes in communities all across BC where individuals live comfortably in groups of three or four.

Over 280 Local 501 members are employed by Bethesda working in roles ranging from resource program worker to registered nurse. They provide hands-on care for the developmentally disabled and look after their physical and emotional well-being.

Cheryl Kokayko is a personal care aide at Bethesda’s east Kelowna home. Her day starts at seven in the morning, and she hits the ground running.

“For the day shift, I cheerfully wake up the individuals and prepare them for the day,” says Cheryl. “I wash them, make them feel fresh, dress them, give them breakfast. Some might be going swimming that day. Some might be going sailing or horseback riding or going for a walk. Then we’ll have lunch and do our afternoon activities.

“We do a lot of hanging out with the individuals and attending to their needs and preparing their meals, cleaning, doing laundry—things you would do in your own home. There’s a lot of satisfaction in this work. There’s a lot we can do to make them happy and comfortable. Just interacting with them makes them happy. In this work, you have the potential to give someone a lot of joy.”

Susan Light, a registered nurse for both the Kelowna home and north Kelowna home, and steward for the Kelowna home, has found that nursing for Bethesda is unlike any kind of nursing she’s done before. It’s a much more holistic approach. The individuals typically have high medical needs, so the nursing staff also do a lot of the things common to the profession: medication administration and assessment, updating care plans, and following up with doctors and other medical professionals.

“But I realized very quickly working here that it’s a completely different way of looking at nursing,” says Susan. “We look at the whole person—not just a certain aspect of their health. And the pace is much slower. When I’m dealing with individuals who have high medical needs, I can’t rush in and perform their assessment and rush out because it will scare and upset them. I have to have a very slow, relaxed, gentle approach. I tell them exactly what I’m doing. Sometimes, I even demonstrate on myself what I’m going to do.”

The care Bethesda provides is 24/7, 365 days per year. Grace Camasura works full-time overnights at the Richmond home. Along with cooking meals for the next day, cleaning, and doing laundry, she also does a lot of personal care for individuals.

“I have to monitor them throughout the night, especially if they’re sick,” says Grace. “I have to make sure they’re breathing properly, that they don’t have a fever, and that everyone’s safe.”

That attention to safety applies equally to the individuals and the members who care for them. As in any home, potential hazards loom everywhere.

“Safety can be about the simple things like wearing the right kind of shoes to work—not sandals or flip-flops,” says Tatiana Bernal, a resource program worker and steward at the north Kelowna home. “We also have to protect our backs and be careful how we position ourselves, because we’re always working with people in wheelchairs and people who are disabled in some way. The houses have all the equipment like bed lifts and special baths, but we have to be conscious of our posture and proper lifting techniques.”

Because some of the individuals display aggressive behaviour, members have to be extra vigilant in protecting both themselves and the individual. After years of working with them and getting to know them on a personal level, members get really good at reading the cues of their nonverbal individuals.

“One gentleman we work with is nonverbal and quite strong,” says Joslyn Jenkins, a resource program worker and steward at the east Kelowna home. “The way he communicates is generally through anger and frustration. He can lash out sometimes. You really have to be aware of what mood he’s in and how to work with him when he’s like that. You have to learn how to read people and know when to stay back.”

Not being able to reason with an individual who is frustrated and upset is a big challenge for members. They have to do everything they can to figure out their client’s need at that moment, while the client continues to be self-violent and angry.

“Sometimes, you’re just at your wit’s end,” says Chris. “You really need to find peace within yourself and do the job. You need to be able to respond to them and call upon whatever tools you have emotionally to do that.”

“You have to be professional in your role, treating these people with dignity and respect,” says Lisa Peters, a resource support worker at the east Kelowna home. “But you also have to get past those borders and get to know who they are and who they were created to be. You put the disabilities aside and see the person inside of them and the joy that’s there. They may be in a wheelchair, they may not be able to get around town or pick up a spoon, yet they have so much to give. That’s really the essence of what we do with these people, getting to the root of who they are. It’s pretty special work.”

Without a doubt, doing the job requires a lot of emotional fortitude. The hardest part of the job for these members is watching the suffering of those that they care for so completely, especially when they know there is little they can do to help them.

“If someone gets sick that can lead to serious complications” says Eric Janzen, who works at the Clearbrook home. Like his brother Chris, Eric is also a resource program worker and steward. He’s been at the home long enough to have had a couple of clients pass away. “That’s pretty difficult. There’s that bad feeling sometimes when you wish you could’ve done something more. You have to realize that some things are out of your control.”

The stress and anxiety of the job that members such as Chris and Eric do is unlike that of many other jobs in the economy. In other jobs, employees work a few hours and take a break, work another few hours and go for lunch.

“In this job, you’re always on,” says Chris. “Once my guys are awake, I can’t say to them, ‘Sorry, you can’t go to the bathroom right now because I’m on break.’ It’s eight hours of being emotionally connected to the job.”

Having a good work-life balance is key to managing the stress and the ups and downs of being so emotionally invested in the individuals’ lives. But it can be difficult for many members to find the time.

“Juggling everything in my life is not easy,” says Lisa. “Wherever I am, whatever I’m doing, I’m pouring 150 percent into it. When I leave work some days, it’s not easy leaving my work at work. I have a husband and three children, and I’m also a student right now, so it’s a challenge to keep it all balanced.”

Many members also work a different shift each week. Along with the nature of the job, working shifts takes a heavy physical and emotional toll on members.

“We have to be careful because we’re more susceptible to sleep disorders,” says Tatiana. “The challenge is giving your body time to recover so you don’t burn out.”

“It’s so important to make sure you stay physically fit and energetic,” agrees Colleen Erzinger, a resource program worker and steward at the Penticton home. “Caregiving can get pretty draining. You have to know how to recharge your batteries.”

Long, intense hours, shift work, and a job that is physically and emotionally draining is not for the faint of heart. But it’s the connection with the individuals that keeps these members going.

“I have a special bond with one of my guys,” says Chris Sader, a resource program worker and steward who has been working at the east Kelowna home for over 20 years. “And I’ve had it since day one of meeting him. We just connect. I’ve probably known him longer than I’ve known my husband—I probably spend more time with him than my husband too!”

Some individuals were once in institutions, where they did not receive the kind of one-on-one care they receive now in Bethesda’s homes.

“I’ve heard of people being anchored to the wall in some institutions,” says Chris. “They just have so much more freedom now in their homes. They can get a snack in the middle of the night if they want to, or enjoy time in the backyard or out in the community. They’ve never had that before.”

Part of the job is also to make sure that the home doesn’t feel like a workplace.

"I try to create an atmosphere that’s fun and light- hearted and loving and caring—just like how we want our private homes to be,” says Eric. “My favourite part of the job is the satisfaction I get from knowing I’m helping the guys live life to the fullest. They’ve faced so many challenges and difficulties, so to be able to help them enjoy their life is what makes it worth it.”

Some individuals in the homes have family who are in regular contact with them. Some don’t. “Sometimes, the only love these people get is from us,” says Chris.

For these Local 501 members, their work in Bethesda’s homes is not just a job that they come in and do and get a product at the end of the day. They’re dealing with the emotional makeup of human beings who may or may not even be able to show emotion.

“There’s those glimpses—those Wonderful World of Disney moments—where you can see the real humanity of the person you’re serving,” says Chris Janzen. “Those moments are something so valuable beyond the day-to-day grind of the job. It’s the reward of seeing peoples’ lives being lived to the most that they can.”

Angelika Ouellet, Tatiana Bernal

Cheryl Kokayko

Chris Sader and Joslyn Jenkins

Colleen Erzinger

Grace Camasura

Lisa Peters and Susan Light

No Place Like Home

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