My dad now makes risky choices and I need to accept the role reversal

This First Person column is written by Edmonton resident Julianna Barabas. For more information about CBC's First Person stories, please see the FAQ.

Another trip south, another sense of impending dread on the last leg of the drive. As the prairie stretches flatter, the sky broadens and widens, leaving nowhere to run or hide. 

I pull up in front of the house, knowing Dad will not be waiting to greet me. Having trouble remembering when that stopped, but it has been over a year. A year like no other … what am I going to find today? How much food mouldering on the counters, sitting in pots on the stove, shoved higgle-piggle into the fridge?

But as a gen-X Canadian living with a parent from the silent generation, I have come to treasure the moments he opens up. 

We sit together at his kitchen table, shooing flies from our lunch. I've brought cheese. He cuts a piece deftly, pulling the pocket knife from his home village toward him with confidence lacking in so many other movements now. He starts to nibble on the cheese like a chipmunk, using his front teeth as they are the only ones he has left. The bottom molars are long gone — he let them disintegrate rather than pay a dentist. The pain must have been terrible, for years. Maybe it still is. 

Like his mother before him, he stoically chews with what he has left. He pauses and looks at me after a sip of red plonky wine. He smiles and says: "I'm just so grateful for this abundance. I enjoy this simple wine and food so much. I love the variety and that there is so much of it." 

My eyes tear in equal parts frustration and admiration at his ability to appreciate so fully when he is so at risk. Every professional I have contacted for support reinforces the uncomfortable reality that only he can choose his path — even if I see vulnerability where he sees autonomy. 

Months later, a phone call: "I don't want to tell you what happened." 

Dad's tight anxious voice lilts, hitting me like a punch to the heart. The dance we have practised for years starts again in this phone call. I take a breath and start reassurances:

"Dad, if you can't talk to me, who can you talk to? Please tell me what's up."

"The power has been cut off."

How am I going to help from 600 kilometres away? 

As a refugee who left Hungary in 1956, Dad's eastern European ways stood in sharp contrast to the parents of my northern Alberta peers. He was the only one of his seven siblings to start university, and though he did not finish, my sister and I would. 

To respect his autonomy, I moved back home.- Julianna Barabas

Dad had a specific, wide-eyed way of looking at me, chin tilted down and voice solemn, outlining promises I did not really understand at the time. His offer to pay for my first degree in exchange for taking care of him in his old age seemed generous and kind, if not somewhat controlling. Decades later, it has become clear that fulfilling my end of the bargain is not what I or even he expected.

When Dad's wife, a lifetime baker and professional cook, put plastic corn holders into a hot oven and nearly started a fire, it was clear Dad had become a caregiver for someone with dementia.

The fierce independence that Dad needed to survive coming to this country as a young man reared its head as I tried to get him to make plans, accept help and document their wishes. Five years of argument led to one eight-hour day slowly completing a personal directive for him. It was the only document I could convince him to finish. The heat and sweat of that long afternoon was not in vain, but again defied expectation.

When COVID hit, Dad dismissed my warnings as hysterical. But I packed up my home office and drove south to stay with them indefinitely. Early one morning, Dad wandered out unsteady, covered in sweat. 

"Are you OK, Dad"? 

"I hope so" was his uncharacteristic response. 

Dad sat at the kitchen table. While his family doctor talked me through checks, Dad's eyes suddenly rolled back and his head started to drop. I caught him before he fell, head lolling on my shoulder. 

Thanks to his doctor, paramedics were there not a second too soon. His heartbeat had dropped to 20 a minute — any delay and he would not have made the airlift to Calgary for emergency heart surgery. 

Throughout the six weeks of recovery, his face would light up like a kid at Christmas every time I walked into the room. Yet trying to run the house in his way proved more than I could deliver. Juggling care for him, his wife and trying to work amidst COVID was turning me into jelly. To respect his autonomy, I moved back home. 

Dad's wife is now in extended care and I call daily to check in. In spite of loneliness and a slow spiral in his own health, he remains firm that he wants to stay in his house, to die there, in fact.

It's taken all of this and more for me to understand that keeping my end of the bargain comes down to listening to what he wants and chooses — accepting he is living on his own terms for as long as he is able.

Listen: Caregivers Julianna Barabas and Karen Cuthbertson share their heartache and advice

This month, the CBC team in Alberta will focus on family caregivers and the challenge Alberta faces reforming care for the frail and elderly. Visit cbc.ca/familycare to read more.

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