Father’s Day is coming up on Sunday, June 20^th. I was thinking about my dad recently. Several years (decades!) ago, when I was six, I had my tonsils taken out. My dad was at a bit of a loss as to how to deal with me. He didn’t really know how to be any kind of caregiver. When he grudgingly visited me in the hospital, I knew he was pretty uncomfortable. Trying to do something to make us both feel better, he pulled out a deck of cards and taught me to play gin rummy. As I grew older, it was one of the few pastimes that we continued to share.

Dads will do anything for their kids. Whether that’s just trying to keep their child’s mind off her scratchy throat or finding long-term solutions to ensuring their disabled child’s care, Dads find a way. That’s why I was honoured to sit down with Ed Mcmartin. Ed’s an Integration Lead, currently working on the Coke Boiler Replacement Project at Suncor – a project that sees the replacement of three aging petroleum coke-fired boilers with two highly efficient natural gas cogeneration units that will generate approximately 800 megawatts (MW) of reliable, low cost, low-carbon power to the Alberta Interconnected Electrical System.

Ed is also a family caregiver, along with his wife, for his son, Jared. I talked to Ed about his journey as a caregiver.

PumpTalk: Thank you for sharing your story with our readers, Ed.

Ed: I don’t normally like to talk about our situation, but I hope that relaying our story will be a small contribution towards helping the younger generation who might just be starting on their caregiving journey.

PT: Can you tell me a bit about Jared?

Ed: My son, Jared, who is now 19, has a metabolic disorder, and part of his brain stopped developing at age 2. By age 6 he had lost all his speech, all his skills and reverted to a toddler. He also became extremely agitated. He hardly sat down and hardly slept. He required a highly restricted diet, and still does. He also developed epilepsy, which is only partially controlled by medications.

Jared needs help 24/7/365 for all his daily needs. Feeding, clothing, toileting. When the workday ends, our second job kicks in and goes until possibly midnight. Sometimes it was all night. Everyday. There are times he will have minimal sleep for up to 2 weeks. Therefore, mom and dad do not get any sleep either, yet we must get up the next day. Also, Jared is medically fragile. On at least 3 occasions Calgary’s children’s hospital has saved his life.

PT: Now that Jared is older, how has your role as caregiver changed?

Ed: We recently lobbied for and successfully brought a new group home provider into Calgary to help care for Jared. The group home provider originates from Edmonton and was willing to expand to Calgary. Jared moved into the new group home earlier this spring where he and a roommate are cared for by a professional organization. We have since advocated on behalf of others, and this organization will be opening their second and third homes this September to care for similar adults.

The group home has 5 hours of day programming for him, Monday through Fridays, which focuses on skill building. My wife and I see him several times a week, plus we are able to bring him home on Sundays to spend time. We like the group home provider because they are very flexible in terms of his care. This will be important as my wife and I get older. Continued strong advocacy is necessary because disabled people are some of the most discriminated-against folks on Earth. They have no voice at all, other than their parents, immediate family, friends, and advocates. Each of them deserves a purpose driven, meaningful life just like anybody else. This group home provider can give him that, something to do, while being in the community while caring for him.

PT: How did caregiving impact you and your wife?

Ed: There were physical challenges – repetitive strain injuries from managing Jared. Particularly as Jared grew bigger, it became harder for my wife to handle him. Plus, there can be emotional or stress-related challenges. There were times he hardly slept for weeks; this takes a physical toll on the caregivers. We have not had a vacation in 20 years. When others go to the lake or to their second home, we care for Jared.

And being a family caregiver impacts your career. When you have a disabled child, there is an increased likelihood of getting separated or divorced – we saw it with a lot of the families we met. We worked hard to stay together as a caregiver team with a balanced approach – and with that commitment came career sacrifice. In our case, we moved cities, gave up jobs and uprooted the family to be closer to essential services. Some folks think that if you’re a family caregiver, you don’t have aspirations. But that’s not true – we do have them, we are just less likely to be able to do anything about them since so much energy goes into keeping the family stable. So, to maintain family stability, it was important to keep him happy and healthy, get exercise for ourselves, be able to work, have alone time, spend time with our daughter, etc.

PT: What can workplaces do to support family caregivers?

Ed: At an organization, it’s important to build trust between caregivers and company leadership. Leaders should have meaningful conversations with their workers, especially identified caregivers; it would be great if a person’s role in a company could change based on life circumstances - like becoming a caregiver. Suncor is on a journey towards recognizing how employees with unique circumstances can be supported in the workplace.

PT: The Petro-Canada CareMakers Foundation was created with the goal of raising awareness and understanding of family caregivers across Canada. What would you like Canadians to know about family caregivers?

Ed: Everyone should develop an appreciation for what a caregiver does. And know that little things you can do to help a caregiver make a difference. It’s important to remember that they are resilient, passionate people. The role of caregiver fell on their laps for a reason. Please respect them for that.

~

Many thanks, Ed, for sharing your family caregiver journey!

The Petro-Canada CareMakers Foundation is committed to creating awareness and understanding of the issue of family caregiving in Canada and inspire Canadians to help.

From June 15 – June 28, Petro-Canada is giving guests $5 off each premium car wash. Plus they’re donating $2 from each wash to the Petro-Canada CareMakers Foundation.