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.
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Russell Cobleigh replied on Permalink
hi, my name is russ. my accident happened in 2015, december 9th. I was at work and just finished breakfast, the overhead lamp connected to the macine i was working at came loose swung down and hit me on the left side of my neck and head, knockin me to the ground. I never sled for this ( tbi, whiplash, brain fatigue and ptsd ) and no one is showing me the way out
Kara replied on Permalink
Thank you for this. We are 8 months into this life journey post TBI with my boyfriend. We were together 5 years before his accident and I too thought just as you did. "He's gonna live?!? Yayyy." I didn't care if he came back only 30% of the Andrew I knew before, as long as he was here. We are a blended family with 3 teenagers. His daughter is 18, my sons are 17 & 15. Our house is not a home and it's really hard for me. The constant OCD behavior, judging, criticism, and his need "catch" my boys in every wrong doing is causing a distance and tension every day. It can be anything from leaving a granola bar wrapper on the counter, a piece of food in the sink from washing the plate off, to a water glass in their room or wanting something to eat 30 min after dinner. There is always a comment or disapproval. My youngest son has chosen to stay with his Dad permanantly and feels uncomfortable at the house because of Andrew. His brother brings him to my house after school where he waits for his Dad to pick him up and he stays up in his room, they don't talk and my son wont even wait for me to get home to have dinner with me. I have talked, begged, tried to support the "rules of the house" but when it's every little thing...I get tired. There is nothing positive, I feel I can't vent to him, talk to him about my feelings because he will just pour more fuel on the fire. The loving, nurturing and emotional support is non existent, not that there was an overly amount before TBI but there was some. I feel guilty for my emotional needs and I also feel they are unrealistic so therefore I don't say anything and its an emotional hurt I have daily. How do I set boundaries on something such as his dislike and negative opinion of my kids? You can't make someone like any one. He see's nothing good in them and they have failed as teenagers in learning how to become young adults. How do I express my emotional need from someone who has told me before, "that's not who I am. I don't do that"..... I am a very optimistic and loving person but I feel the pessimism taking over and withdrawl from friends and family growing every day.
Mary replied on Permalink
Please look into HBOT for brain injury healing. It works. I've had it.
David replied on Permalink
It's great to see you stuck it out. I had my TBI back in 1990 and lost total memory pre-accident (I was 30 then) It was tough no idea of who I was, no recollection of friends and family or my job. You see my Frontal Lobe was pretty well damaged.
Our marriage broke up 11 months later. But, never gave up in rebuilding life.
It is a tough ride and in our case, it happened. I still to this day look at my ex-wife and have no idea who she is.
The biggest thing in those first few months is working out what to do next.
The first few months is coming to grips with in some ways a rebirth. A fresh start. If it is good or not is anyone's guess.
The first few weeks, were very stressful and mixed feelings. Then some tests were done and after been told the injury was called Frontal Lobe Syndrome, the hard part was been told the statistics of what the future was.
It was that moment that given a name for the injury things changed. After all there was no good tick's, just a lot of crosses.
Then my brain said I'm listening to that and started to study and learn.
Its amazing looking back on my life the last 27 odd years and all the achievements. Some not so great, days but it was about why not just do something and see what happens.
I take my hat off to any partner friend etc who sticks it out and helps.
Life is pretty good, it might not be where you want to be. What you do is learn a lot.
Some can make a difference and some have more difficulties.
I always found that life is what it is. Now its about it might happen to me what can I do
Thankyou for sharing your story
Dwilliams replied on Permalink
So true. I was told when my husband was in the hosiptal that this road i was on would be harder for me than him and it is. I remember our last 32 years together he only remembers some. I miss my husband before tbi he loved me and spoiled me. He still loves me alot but not quite the same. He tells me you don't know what this feels like and i don't but in the same he don't know how i feel i lost my bestfriend 23 months ago. On good days i can see a little of my husband before tbi world then somedays i get throwed a curb ball and he gets down and confused some. But on good thing we do have more good days than bad ones. I give all the glory to my heavenly Father for my husband and still able to have a life with him. I still have faith things will keep getting better but it is hard.
Anonymous replied on Permalink
Anonymous replied on Permalink
Anonymous replied on Permalink
I have been told so many times "in times of peace, prepare for war." So true.
Anonymous replied on Permalink
You put into words what I fought to say. I stayed. I wanted to runaway at times. Instead I take time away visiting our daughters. He did not come at first because they made too much noise. But the last 2 trips he joined me. I will share this with family and friends because it is what I have been trying to say and explain.
Thank you for your wonderful words.