I often feel like an invisible caregiver when talking to health-care workers
Sometimes our charges need advocates with them in the room
This First Person column is written by Jennifer Oujla who cares for her adult children and mother from her home in Edmonton. For more information about CBC's First Person stories, please see the FAQ.
Why do some health-care professionals feel they have the authority to yell, dismiss or ignore me when I am the one person who their patient depends on full time?
Last winter, my adult child and I went to see a new specialist. I was hopeful we could get answers to why he was having sudden headaches with partial numbing in his face and arms.
The room was empty and quiet when the specialist came out to get my child.
We both rose to follow him. Suddenly the specialist stopped and got in between us.
"Are you his mother?"
"No, I am his guardian and caregiver," I said.
"He is over 18 and does not require you. COVID protocol and confidentiality stuff, you know."
I immediately felt invisible. I wonder if this practitioner has ever been on the other side of this door.
Very gently, I explained that my son is neurodiverse and autistic. He has memory issues and cannot always speak for himself, especially with strangers. So he, the doctor, may not be able to get the information he needs without me.
I could sense a shift in the doctor's demeanour.
"I will be the judge of that!" he yelled, his words carrying an uncomfortable echo in the room.
"Sit back down and I will come and get you if I need you!"
My wide-eyed child gave a half nod when I asked him if going alone with the specialist was OK. He trundled off. I sat back down to cool my burning cheeks.
I am the epitome of an intergenerational, sandwiched caregiver. I give care beyond normal parenting for my three neurodiverse, medically-complex young adult children, and I also provide long-distance care and guidance for my elderly mother. My father recently passed away with dementia.
I am the on-demand, unpaid Uber driver; the maid, cook and guidance counselor. I worry my children will never be able to master the art of simple cooking, healthy eating and clean up. Looking for work in a neurotypical world requires a lot of hand holding. I wear other hats, too. I am the official appointment maker, comfort giver and communications director, when I'm allowed in the meeting.
I love my family and I love caring for them, but it's a job made infinitely more difficult when you're not recognized. This was not the first time a professional had angrily "put me in my place."
I got up and left to sit in my car.
Appointment over, my son wandered for 10 minutes before he found me.
"So what did the doctor say?" I said cheerfully, not wanting him to know I was upset.
"Nothing. He asked me some questions."
"I don't know. He gave me this paper."
I took the lab sheet and glanced over it in horror. It only listed tests for an STD panel.
I tried prompting him for more information: "Did you talk about your migraines and numb feelings and falling down the stairs?"
"I think so, I don't know, I can't remember."
He looked miserable and stressed. I knew then that we both felt lost and unseen.
I understand it's important for a physician to stress confidentiality. But the flip side is that many people with disabilities or diminished mental capacity need an advocate.
I have met some phenomenal professionals who involve caregivers and bring so much understanding and calm to the appointment even if neurodiversity is not part of their typical clinical day. But sadly, that's not routine based on my experience.
Last year, Alberta Health recognized the issue and funded a new continuing education module for health care professionals on this topic. One in four Canadians are family caregivers like myself. It's estimated we collectively put in $66.5 billion in unpaid labour each year.
I didn't anticipate in this journey how irrelevant I would feel. I won't let my charges fall through the cracks. But it would sure be nice to be on common ground with their health-care professionals.
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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