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Everyone needs boundaries in work and life, but in the world of family caregiving, the ability to make and understand your own line in the sand can be the difference between thriving or just surviving.
Twenty years ago, when I was caring for my husband as he recovered from a traumatic brain injury, I was a frenzied, sleepless individual, just getting by hour by hour. Well-meaning friends tried to pry me out of the house to take my mind off our situation, but that wasn’t where my head was. What I really needed was to sleep or be by myself, but the “good girl” in me didn’t want to let people down. Saying “no” didn’t feel like an option. Everyone had been so generous to our family; I didn’t want to be disrespectful. I found myself saying “yes” to things that would please other people.
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Suzanne Mooney, 79, from Ottawa, Canada, is in the thick of caregiving for her husband, Terry, also 79. A management consultant and communication professional, she accompanied her Canadian Foreign Service husband, living around the globe and traveling extensively for more than 40 years.
Terry was born with a defect — foreshortened arms — but his intelligence, tenacity and perseverance allowed him to use his foreign diplomatic career to try to make the world a better place, specializing in “disaster situations” around the globe. Today, Suzanne and Terry’s world is circumscribed by his health situation, what she calls “a carousel of symptoms and impediments,” including Parkinson’s disease, vascular dementia and an anxiety disorder.
“Going from relying entirely upon his own strength and ability to being the recipient of help with daily living has been difficult for him,” Suzanne says. “As a new caregiver, you don’t know you have boundaries, or even exactly what they are, until you cross a line — and that’s shocking. Growing up in the 1950s and ’60s in Montreal, women weren’t taught to have boundaries, so I’ve been left with the feeling that you can never do enough.” Suzanne has reached the moment in Terry’s care when she needs to find a place to handle his round the clock needs, and that emotional decision is complicated by worry around finances.
Donna Thomson, 69, is a family caregiver and educator from Ottawa, Canada. She is the author of two books on caregiving, The Four Walls of My Freedom and The Unexpected Journey of Caring, plus a regular blog. Thomson teaches an online course called Caregiving Essentials at McMaster University, providing information on how best to support caregivers. Establishing and keeping boundaries are important elements in the classroom discussion.
The need for training
Thomson has been a caregiver to family members, including a mother with dementia, all her adult life. Her son, Nicholas Wright, 35, was born with severe disabilities, including cerebral palsy, epilepsy and chronic pain, which have resulted in more than 100 hospitalizations and require 24/7 care.
“Up until now, there hasn’t been public discourse or training around how to navigate tough caregiving situations. It’s such a private topic, and then you add to that the personal nature of where setting boundaries begins for each of us,” Thomson says.
She wrote her books in part because there was so little advice out there for caregivers. “There are so many books on babies, and we devour them as new parents, but in the past, there’s been an expectation that caregivers can train themselves. Families spend lots of time protecting and shielding their children from the deep trenches of caring, and we miss an opportunity to pass down valuable information on the how.”
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