James Cumming, MP Edmonton Centre, caring for his son

To understand why I took on public service a year ago, I must first explain my personal story. I am a father of three children, a son and two daughters, and a husband to my wife Debbie. Our son Garrett was diagnosed with Muscular Dystrophy when he was 4 years old. Muscular Dystrophy causes a gradual weakening of the muscles, so he went from a 4-year-old running around to having a leg braces, and then a wheelchair as the condition progressed. We did various interventions for quality and continuity of life. Garrett began needing around the clock care after being ventilated 10 years ago.

Throughout it all, we wanted to make sure that our two daughters could remain his sisters and not become his caregivers. To prevent this, my wife was his primary caregiver and I supported her. As a father, I was always worried if my wife was getting the reprieve that she needed to recharge her batteries. There was a time when she reached a point of exhaustion and that was when we decided that we needed help from home care workers. We needed around the clock care for Garrett as his needs became more complex.

Regardless of the supplementary care we received, Debbie remained Garrett’s caregiver and knew how to best provide care for him. She managed all the home care workers that were coming in, training them, and making sure she was always available to step in.

The people we have had as home care workers have been extraordinary. However, although you have home care workers, you are still on call. You’re always waiting for the knock on the door. You sleep, but you don’t sleep. When COVID hit, that threw a different level of sanitation into the mix as Garrett contracting COVID-19 could have been terminal for him. Keeping all of this going while being a mom and a dad was the biggest challenge.

There were a lot of highs and a lot of lows. Sometimes you feel like you’re just parents and you’re enjoying your time and sometimes when the needs are more demanding, you feel overwhelmed. You don’t want to feel this way, so you soldier on because you want to do what is best for your child. As Debbie experienced, there is a point where it was not sustainable for you to do this on your own.

This reminded me of the reality of caregiver fatigue. When my mother was in her 80s and my father had a stroke, my mother refused to let us put him in a home. She was so preoccupied with caregiving that she did not look at her own health. It was only after she finally went to the doctors after ignoring a pain in her back when she was diagnosed with pancreatic cancer and that’s when she finally agreed to put dad in a home.

If I can provide some advice to a new caregiver, it’s that you are not alone. You think you are the only one going through this but trust me you are not. There are many people going through it, and you will make it despite it not feeling that way. Garrett had an astounding impact on who Debbie, and I are. He led me to public service because he had a keen interest in politics. Garrett majored in Political Science and got a master’s degree in Global Security. I thought this was something I could do, and he could do with me.

When speaking in the house about constituent issues or economic issues, Garrett was always in the back of my mind. Garrett was a big part of my motivation. I’d see him like the odd social media post that I made, and I would hear about some of the stuff I did that he didn’t agree with. He loved hockey and cooking shows and the political theater. I miss him everyday.

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