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How to Set Boundaries as a Family Caregiver

Sometimes saying ‘no’ is the only answer

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AARP;(Source: GettyImages(6))

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.”

“There are many different categories of boundaries in a caregiver’s world,” Suzanne says. “There are the boundaries around my husband’s needs, those that exist in the medical profession and the social workers who get involved. Some days I don’t know whether I have any boundaries at all, but I see it less about pushing back and more about continuing to think about what I need to make it all work.”

One of the things that help Suzanne navigate the low moments of caregiving is the knowledge that she is part of a “greater tribe” of people in the same situation. The AARP Family Caregivers Discussion Group on Facebook is a private discussion group and a safe space where she finds solidarity and can rage or complain. “It’s easy to think, What’s wrong with me?” Suzanne says. “And then you read other people’s posts who feel like they can’t continue, and you get up and do it one more day. It’s a way to get some breathing space.”

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Setting strategies in motion

Suzanne is working on setting better boundaries with Terry, not rushing to his every whim or feeding into his flashes of anger. She’s found that daily walks with the dog and letting her husband sit in front of the laptop or TV longer than she might have in the past are helpful coping strategies to find more time for herself.  

She’s also tried to become better at interacting with various people, which she views as the “inner” work of setting boundaries. “How you approach people is critical to get what you want or the outcome you need, whether that’s family, friends or medical professionals,” she says. 

According to Thomson, the concept of saying no in caregiving is often unrealistic. Saying no feeds a sense that if we are not always available for our loved ones, we’re carrying out our caregiving duties the “wrong way.” But if we do “just say no” and take some time for ourselves, we are riddled with guilt. “There are two people in a caregiving relationship, and both need care,” she says. “The trick is finding ways of accounting for boundaries within the care relationship. It’s about finding workarounds.” 

The importance of scenario planning

Thomson counsels that one of the most important steps for a caregiver is to do some “scenario planning” with your family and the care team. This involves thinking about your own values, family history and the facts of your life. 

“You need to consider your own personal barriers and what makes sense for you as the caregiver,” she says. “Then tell yourself that this is the best plan you have in the absence of knowing the future. You absolutely need to be prepared to change plans, but at least you have something.

“Caregiving is a job, like any other job,” Thomson adds. “And you need to think about where your lines are. This is where it becomes very personal, because only you can fill in the blanks on “I will do this, but I’m not willing or capable of doing that.”  

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For example, a daughter who is caring for her father may decide that toileting and bathing are her boundaries for many different reasons, including her father’s dignity. According to Thomson, the caregiver should not shy away from making these feelings known to the family and medical team. “You have to tell people with absolute clarity that this is your boundary. You have to say it out loud before things get to that point, and be very clear,” she advises.  

One of the first places to start in the scenario planning is to have a conversation with clinicians and ask, “What will I be dealing with in six months, a year, two years and so on?” Though no one has a crystal ball, Thomson suggests that beginning to imagine the details of future caregiving is very important.  

“Talk to other caregivers and ask them about their day and specificities around disease progression,” Thomson says. “Questions such as ‘What’s it like when Mom doesn’t recognize me anymore?’ or ‘What’s the hardest thing?’ can provide a clearer sense of what you will be dealing with and put you in a better position to make a plan.” 

Boundaries are complicated, because many of us labor under a fantasy that we should be able to do anything and everything because of our love and our will. “The truth is you need to ditch the idea you can do it all alone,” cautions Thomson. “But you can take control of the information flow and set your intended plan.” 

The guilt around boundaries

Sometimes it is helpful to think of the word “trespass” — and how it relates to boundaries. For some caregivers, helping with activities of daily living or medical procedures cross a boundary set in the relationship. Thomson is reminded of her mother, who was in her 80s and looking after her husband with Parkinson’s, when a medical professional told her she’d need to learn how to handle a catheter. Her mother refused. 

“Many people would feel like they should say yes, because they don’t want the other person to think they don’t love their husband,” Thomson says. “But studies show that the most stressed caregivers are those who have to operate life-sustaining equipment on their own. Imagine being discharged from the hospital with someone whom you are expected to keep alive with complicated nursing procedures.”

The worst thing a caregiver can do, according to Thomson, is to keep going along with the conviction that you’ll do whatever it takes to look after a loved one until they die. She recalls a caregiver she met who moved three states away to care for her mother after she broke her hip. Four years later, the daughter was still there, her children growing up without her back at home and her mother moving toward incontinence.

“This person now sees all the crossed boundaries that she didn’t try to anticipate at the time, and she is in a lot of pain right now,” Thomson says.  

Setting and Keeping Boundaries

Caregivers Suzanne Mooney and Donna Thompson learned these lessons:

  • Reassure yourself that you’re a dutiful and loving caregiver, then write down all the things that you can and want to do for a loved one. Now make a list of things you would like someone else to do. Lastly, create a list of things you will not do under any circumstance.  
  • Remember that you do have control over your responses — even in challenging situations. It won’t feel good to burn a bridge.   
  • Honor and prioritize your own well-being.  
  • Set realistic expectations, and give yourself permission to adjust. It doesn’t mean you’ve failed if plans must change.  
  • Delegate when you can. Care is a project that requires management. The caregiver is the project manager and team leader. 

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