A Family of the Heart

For the last 17 years of her career, Dawn worked at John Dolan, a school in Saskatoon that serves students with multiple disabilities. With a Masters Degree in Exceptional Education, she worked half-time in the classrooms and half-time as Vice Principal – eventually Principal. “I worked with children and young adults with intense special needs,” she says. “We had a lot of students with medical and health needs. I learned a lot about life, illness, challenges … and I learned that people can really use a lot of help when they’re in the toughest of circumstances. Little things can actually be really big things in those situations.” 

When Dawn retired in June of 2017, she knew she wanted to help others. “I had been intrigued by hospice-type work for many years – my first meeting with the Prairie Hospice Society [PHS] staff confirmed that this is what I wanted to do with my extra retirement time.” Dawn did her volunteer training with the PHS in November of that same year. “And on my last day of training, Sheila Morgan asked if I’d be interested in working with Allen and his family.” 

Allen Tulagan was one and a half years old at the time, the youngest-ever client of PHS. Allen was born with Goldenhar Syndrome, a rare condition which causes abnormalities of the face and head, as well as the internal organs. After spending his life up until then in the hospital, Allen was coming home to live with his parents and his older sister for the first time. While Allen isn’t at end of life, he does have a Pediatric Palliative designation; he requires machines and a team of people to keep him alive. For this reason, PHS felt they could provide two volunteers to help assist the Tulagans.

“I was matched with another volunteer who’s more experienced than me – Sheila Ann,” says Dawn. “Allen is a pretty complex little guy. He was fresh out of the hospital, and ‘Mom’ was being trained to manage everything.” This includes suctioning his tracheostomy and monitoring his ventilator, oxygen compressor, and gastrointestinal feeding tube. “‘Mom’ is amazing, oh my gosh!” says Dawn. “I don’t know any mother who could do more for her kids. ‘Dad’ is great too, but he needs to be at work. 

“Most of what Sheila Ann and I do is help get Allen to his medical appointments,” explains Dawn. Their system is to arrive at the Tulagan home an hour ahead of time; it takes a while to get everything organized and packed up. “In the beginning, Sheila Ann and I would take turns driving Allen, his big sister, and ‘Mom’ to appointments. After Allen’s little sister was born, Sheila Ann would stay at the house with one or both girls, while I drive ‘Mom’ and Allen to appointments,” says Dawn, who has Allen’s car seat permanently installed in the back seat of her car. “Sometimes I’ll wait in the waiting room for them, or sometimes I’ll come into the appointment – ‘Mom’ finds it helpful to have an extra eye and ear there. Because of my background, a lot of it makes sense to me. For instance, many of the students at John Dolan School had similar pieces of equipment.” 

Despite his challenges, Dawn says Allen is just a typical little boy in a lot of ways. “He loves car rides, oh my gosh! I’m convinced when he sees me, he knows it’s car ride time – he’ll have a huge grin. He’s always a happy little boy, regardless. Anyone who meets him falls in love with him in a nanosecond!” she laughs. “He’s such a busy little boy, and he’s feisty which I like to see – it shows me he’s going to learn easily. I’m excited for when he’ll be ready to attend a special preschool.”

While spending time with Allen will vary – one week he may have one appointment, the next week he’ll have two – Dawn sees two other PHS clients on a regular weekly basis. “For several months I’ve been matched with a 75-year-old gentleman with cancer,” says Dawn. “He and I visit while his wife naps or reads books, or walks the dog, goes shopping. He’s a great conversationalist, I can’t believe how quickly the time goes.” She feels very lucky to have such a genuine connection with this couple. In fact, if her client is sometime well enough, they’ve talked of socializing with Dawn and her husband. 

As well, Dawn is the companion to a woman in her late 80s, who has cancer. “We do a variety of things together. I take her to appointments, we go grocery shopping, we’ve gone to McNally Robinson because we both love books and we both have a sweet tooth, so we often stop for a treat,” she smiles.

The general guideline for being a volunteer with PHS is that one would spend four hours a week in service. PHS is careful not to lean on their volunteers too hard, and is well aware of the emotional nature of this kind of work. However, with three regular clients – “plus I’m able to give spur-of-the-moment help when there’s a need” – Dawn spends up to 10 hours a week as a PHS volunteer. But, she insists, she is not overstretched by any means. “This is my main and sole volunteering spot. It’s my choice. And I’m monitoring myself to make sure I’m not overdoing it; I want to bring my best. I love the work,” she states. “I could not be in a better volunteer position. 

For Dawn, the work is rewarding on multiple levels. “The clients and their families are so incredibly kind, appreciative, and resilient,” she says. “I’ve been amazed at how quickly and strongly I’ve connected with clients and their families – I’m literally entering their homes as a stranger at a most stressful and highly personal time and they are trusting me to care for their loved ones. Two to three hours of our time can be huge for families … for instance, there was once when I knocked on the door of a client’s house, the wife and sister of the client were literally teary-eyed with appreciation that I was there to give them a break. One of them commented, ‘I knew we could hang on until Dawn came,’ and off they went for a few hours of respite while I had the privilege of spending time with their loved one.”

Although she tries to anticipate and plan for client visits, Dawn says she’s learned to simply go with the flow and follow the client’s lead. “I’ve learned that silence truly is golden – one visit in particular reminds me of this. I had enjoyed several good conversational visits with an elderly lady before she became too ill to speak. On what was to be our final visit – she died the next day – I sat beside her while she was resting in bed. At one point, she reached out from under her blanket and held out her open hand. Nothing needed to be said, we simply held hands.”

Dawn’s eyes are misty. “Of course, it is very hard and very sad when one of the people I’ve met and connected with dies. To help me deal with my grief, I ask myself ‘Would I have rather not met this amazing human being?’ To which I respond ‘Absolutely not – the gifts and the joys I received from being part of this person’s life are with me forever’. I try to bring these gifts and learnings with me, as I meet new clients and their families.”

Asked what drew her to hospice work in the first place, Dawn says it was almost selfish: she felt she needed to heal herself from some negative experiences she’d had previously with people close to her who died. “I knew in my head and my heart that it didn’t need to be such a horrible event if people were supported and listened to,” she says. “I’ve found it’s really helping me with my own healing. It’s taught me so much about life and obviously death. It’s taught me about learning to live in the moment.” She nods thoughtfully. “It’s been everything I’d hoped, and more.”

(Jacquie Moore is a Saskatoon writer. She has been a volunteer companion with the Prairie Hospice Society since 2014.)