Managing the Toll of Caregiver Trauma
A few months ago, a client who is the mother of a child with significant behavioral challenges came to meet with me. We’d been meeting for several months, discussing how the brain works, the ways in which her child’s brain works differently, how those differences are connected to the behaviors her daughter was exhibiting at home and at school, and ways to provide or create accommodations to help calm the chaos her family had been living through for several years.
This mom is a self-described glass-is-half-full type person, and I found her to be just that— optimistic, despite living through heartbreak and periods of despair; hopeful, despite experiencing the massive stress that parenting a child with special needs can bring; in possession of a keen sense of humor, which allows her to make light of situations that many parents might find hard to discuss without breaking into tears.
But the session this day was different.
It had been a long week for her and for her child. She was fielding daily calls from school about her child’s out-of-control aggression towards teachers and other students. School administrators were leveling threats of expulsion— one of my client’s greatest fears, and something she’d worked desperately to avoid since she and her husband are both employed full-time outside the home.
The family had endured full-on rages by her daughter lasting late into the evening. A family keepsake was now broken, along with assorted other objects that happened to be in the eye of the storm.
Tears and yelling and complete exhaustion ensued.
All the while, this mom felt like she was failing to live up to who she believed she should be in these moments. She was not calm. She actively sought to create distance from her child because she could no longer tolerate the verbal abuse and raging behavior. She felt like she was constantly yelling at everyone in her family, all week long.
Upon reflecting on the week during our time together, she noted that if she was “just stronger” and “did what she was supposed to,” her daughter would be “getting better.” Although the week had been particularly difficult, in reality the last two years, overall, had been incredibly difficult. And although she was an optimist at heart, she could not see a way out, a path that might ever truly improve her family’s situation.
I wish this was just one client’s story, but it is the story of many I’ve had the great privilege to journey alongside, and of many more I meet in my work facilitating trainings and workshops. The situations they describe, and the feelings associated with these situations, are those of people who have experienced serious trauma.
I don’t say this lightly, but in parenting their children whose brains work differently, each is separately living through, on a daily basis, a traumatic event. It’s no wonder that these parents frequently describe being depressed, anxious, and on-edge. It is no wonder that they might find themselves physically ill much of the time, with ailments that rarely seem to abate or resolve. It is no wonder that their sleep is disturbed or their relationships might be crumbling. This is what happens when someone’s resiliency has been worn to a nub, when internal reserves are depleted to nearly non-existent levels. Many parents are left wondering how they ended up in such a dark place, and how they might ever extract themselves again.
They feel alone in their experience, that somehow along the way they should have done something to prevent their families from ending up in such a desperate place.
So how do we reach this point? Where does it begin, and what can we do to get ahold of it before it reaches these serious levels?
It’s helpful to realize that, quite often, the spiral begins with relational stress.
Relational Stress is when the relationship between the person and their environment (or other people in their environment) is appraised by the person as exceeding his or her resources and endangering his or her well-being. (Lazarus et al 1984)
When we first begin to experience relational stress, we feel “stressed out.” As the stress continues, we begin to experience more emotional distress and may begin to see physical manifestations such as aches, pains, coughs and colds, or digestive issues that won’t go away. The longer the relational stress remains in place, the more we become habituated in our maladaptive responses, to the point of disturbing our internal or autonomic nervous system balance, leaving these systems in a state from which they are unable to return to normal resting state— to the place where recovery happens.
Chronic stress sets in deep within our physical bodies (the body keeps score!) and our mental psyche. This is often where our relationships begin to suffer, due to an accumulation of symptoms that manifest as: isolation, lashing out, nagging others more often, distrust, feeling resentful, distracted and/or agitated.
A secondary contributor, compassion fatigue (also known as secondary traumatic stress), is defined as a condition characterized by a gradual lessening of compassion over time. It results from an ongoing, snowballing process that occurs in a demanding relationship with a needy individual. In addition to relational stress, compassion fatigue brings with it the weight of frustration, emotional depletion, exhaustion and depression. It also might encompass negative elements driven by concern for the person being cared for, such as hyper-vigilance, avoidance, fear, and intrusive thoughts.
Compassion fatigue can lead to profound shifts in the way we view the world and our loved ones.
We may find ourselves becoming more cynical and resentful, developing a much darker view of the world.
Layered on top of relational stress and compassion fatigue is often a third, equally debilitating factor: caregiver burnout. This is defined as the demoralization, disillusionment, cynicism, and physical, mental and emotional exhaustion that frequently occurs among individuals responsible for the constant care of another.
It’s not surprising that repeated exposure to stress over time leads to burnout. It is not just a mental and emotional phenomenon within us, but has physiological implications as well. Over time, our cortisol levels are greatly diminished, which can lead to fatigue, low blood pressure, lack of sex drive, and gastrointestinal effects. We often see this manifestation of stress and burnout in parents who have children with special needs. The same presentation of stress (reduced cortisol levels) is found in soldiers assigned to combat zones who have become desensitized to danger due to chronic stress exposure.
When we, as parents, are in a similar state of repeated, constant exposure to stress (in this case, our child’s behavior and its ramifications), we too can quickly become desensitized to its intensity. For many, it’s only when we relay to another parent or friend a recent experience with our child, and register the friend’s look of disbelief, that we begin to realize how far outside the bounds of “normal” parenting our experience has veered.
Trauma, relational stress, compassion fatigue, and caregiver burnout…any one of these would be a heavy load for a parent to endure, but what happens when all four are present?
How do we begin to see our way out?
A few suggestions:
Recognize what you’re experiencing for all that it is. The impact of parenting a child with challenging behaviors is serious and needs to be treated as such. As the well-known researcher, author and speaker Brené Brown says, when we ignore our feelings, they don’t go away; instead they own us, growing more intense with a snowballing effect. Parents often need professional support to heal and recover from the trauma they have endured. It should not be taken lightly; if you as the parent are not well (physically and emotionally), it will be that much harder to help your child with the challenges they are experiencing.
Be mindful of the fact that caregiver burnout has been viewed as a contagious syndrome by some who have researched the topic extensively. What does this mean, exactly? It means social context is important. When we’re talking with others who have the same lived experience as we do, but there is no discussion about positive actions that can be taken to shift the tide of our emotional state, it can enhance and exacerbate our own feelings of burnout, instead of helping to alleviate them. Choose your support wisely.
Prioritize yourself and move things off your plate. What does this look like? Delegate anything and everything that can be delegated. Someone else may not do it as well as you— or do it exactly the same way —but that’s okay. Get it off your plate anyway. Toxic friendships? Create distance from them. If you have the means, pay someone to do a task for you that would otherwise hang over your head. Let go of the feeling that you should be able to “do it all.” Say ‘no’ more often. Take a step back to get a critical look at where your boundaries need strengthening, then make that happen. If you’ve been deemed eligible for respite hours from a state or local agency, use all the hours that have been provided. An outside evaluator concluded that you would benefit from that amount of time to avoid burnout, so use it. Let yourself off the hook as much as possible, and let go of the idea that perfection is required.
Don’t assume that those around you, even your partner or closest friends, understand the full impact of your traumatic experience. Find the space and time to let them know how you are truly doing. And then tell them what you need from them. Most of the time those who care about us really do want to help, but either don’t know we need it (because we are so good at pretending and hiding it) or are at a loss when trying to figure out what “helping” or support looks like. Be direct and clear, and then step aside to let them help.
Fill your bucket with things that bring you joy. If something brings you joy or is restorative, it should not be a luxury to be indulged only in those rare moments you can carve out a few minutes of time or space, it is an absolute necessity. I have had plenty of parents say to me, It’s impossible! I don’t have even 10 minutes to myself to take a walk, let alone an hour! I fully appreciate that when you’ve lived in crisis mode for months on end— perhaps even years— and have experienced trauma as a result, this is an honest and true evaluation of your life. I am not saying it is easy to find this time. What I am saying is that it is not optional; your life literally depends on it. With every parent who has shared this sentiment or belief, through more discussion and analysis, we’ve been able to find some time each week where they can fill their bucket.
There’s a great deal of literature and plenty of blog posts and Instagram-ready quotes out there related to self-care, so much that it can be easy to dismiss the idea as some “feel good sentiment” that doesn’t apply to your own experience. But when you are the parent of a child with special needs, and specifically a child with behavioral challenges, it is not a topic that can be ignored. It isn’t something we can do when we feel like it.
In order for us to parent our children differently, in the ways they require, it is a must.
Their life, and ours, depends on it.
Interested in learning more about how to identify the brain tasks your child has difficulty with or about the work Eileen does with parents and parenting with a neurobehavioral approach? Visit eileendevine.com and reach out to her directly. She’d love to hear from you.
Eileen Devine, LCSW is a parent coach and consultant for families all over the world impacted by neurobehavioral conditions. She is also the founder of The Resilience Room, a close-knit membership community for parents of kids with neurobehavioral challenges. She lives with her husband and two amazing kids, one of whom happens to live with FAS. For more information, visit eileendevine.com.