To live in the brain injury world is to accept that much of the landscape here is gray. You don’t have to be here long to realize that the answers to most of your questions are, “I don’t know” or “Wait and see.” There are no authorities who can tell you with certainty how long recovery will take or what it will look like a number of years down the road. There are no clear rules for rebuilding and sustaining relationships with a brain injury survivor. There are no rules period.
In the same conversation, I was told TC would likely survive his injury. I was also told he could change in a number of unknown ways. “He might be aggressive or inappropriate or have a different personality,” one doctor warned me.
At the time I accepted this answer without hesitation. He’ll survive? I thought. Yay! TC’s immediate survival was as much as I could process in that moment.
But the doctor’s ambiguous warning proved true. My husband was changed. His personality was different. In the months that followed, he displayed moments of aggression, depression, and other uncharacteristic behaviors – none of which I felt fully prepared for when they emerged.
In the meantime, this is how much of the world saw me: a loving, deeply committed wife, fulfilling the vows she espoused on her wedding day. One stranger went so far as to commend me for being a “good Christian wife.” I sat in puzzlement at her words. This is NOT how I saw myself.
At times, I wanted to run. I had daydreams about getting in the car and starting over as a bartender in Florida somewhere near the beach. With a son to consider, this was never a serious plan, but on really bad days I often kept it in my back pocket as a reminder that escape was always an option.
As the days went on, however, I continued to stick it out. And little by little, the husband who used to love, respect, and take care of me began to return, and TC 2.0, the post-TBI stranger I saw him as, began to feel a little less like a stranger to me.
On this day, in the moment, I’m deeply grateful I stuck it out because time proved to be a powerful healer in my marriage. But this is not true for every caregiver relationship. Sometimes, time does not change or heal enough of the hard things to make a relationship sustainable. Sometimes, a personality shift in a survivor leads to critical safety issues such as abuse, neglect, or self-harm. Sometimes the trauma of TBI can cause troubling personality changes in the caregiver. And sometimes it’s necessary for a good Christian woman to love herself first, and to step away.
These are gut-wrenching decisions to make. I know that not only from my own experience, but from the network of caregivers I communicate with everyday on social media and in personal conversations. When to stay? When to go? When to get professional help? These are some of the hardest questions we will face in our post-TBI lives.
I don’t have the definitive answers, of course, but I do believe the journey to wisdom begins with boundaries: clear, transparent lines we draw around ourselves and our relationships to help us define what is OK and what is NOTOK in our lives.
Admittedly, I’m terrible at boundary setting. Confrontation of any kind is not my favorite thing, so finding my voice and declaring, “This does not work for me,” is something I don’t have a lot of experience with. But I’m learning. And as a mother, I don’t have the option of pushing this task aside. I have to decide what my limits are and where to draw those lines so that I can ensure my children’s wellbeing and safety.
The best time to have these conversations, of course, is before someone gets sick - when two people can sit in loving solidarity and decide, with clear heads, on a course of action. A family member’s recent diagnosis of Alzheimer’s has served as a reminder to do just this. Now that TC and I have entered our new normal, it’s time to sit down and think ahead. If he should backslide, develop dementia, or exhibit other potential personality changes, we must choose our reaction now. The same is true for my own health. The best time to establish these boundaries - to decide when too much really is too much - is before we are pulled back into the abyss of crisis.
Knowing our boundaries and firmly establishing them in caregiving relationships is the closest to black and white we can hope to get, and by no means is it easy work. Even on those worst days, when I struggled to find likeability in my partner and when I wanted an opportunity for a new life, I was still bogged down with suffocating guilt. I felt selfish and unloving when I wasn’t able to just take it on the chin and suck it up. This is what good caregivers do, I told myself. They just take it. But here’s the truth: “good” caregivers come in all shapes and forms. They do not act in one prescribed way, and while they have the patience to stick out some of the bad days, they also have the self-respect and love to demand good days in between.
Whether you are in the role of caregiver or survivor, draw those lines now – for yourself, and for others. Inform the people you love about what you need to be loved back, and don’t shy away from planning ahead.