How To Let TBI Take Over Your Life — or Not

How To Let TBI Take Over Your Life… Or Not

When I first started caring for my husband after his traumatic brain injury, I felt strong, determined, and ready for anything. But as time passed, and the slower-than-slow healing process dragged on, I slid into a downward spiral and became a woman obsessed with TBI.

 If you want to let TBI completely take over your life, follow these strategies. I’ve tried these and hated the results:

  1. Wake up each morning, groan, and expect a rotten day.
  2. When your loved one with a TBI does not want to get up and going, take it personally, say something nasty, and stomp out of the room.
  3. Each time you feel disappointed at the response of your loved one or his/her inability to communicate with you the way you want, say to yourself, “I hate my life. He’ll never get better.”
  4. Cry and complain to anyone who will listen. Give every detail of why your life is pure misery, and don’t let your friend change the subject.
  5. When a friend asks, “How can I help?” be sure to answer, “You can’t! TBI has ruined my life!”

Stuck in a negative cycle

When I lived by these strategies, I felt frustrated, angry, resentful, and exhausted, and I blamed all of it on TBI. Then, one day, I realized my children were watching me handle adversity, and they were learning to blame all their bad luck on someone or something else in life and to react with anger if they didn’t get their way. They were not learning tolerance or kindness from me when I behaved this way.

My reactions impacted every member of my family; misery in families is contagious. I could not sleep, making it harder to get up in the morning to face another day — another hard, sad, angry day just like the one before.

So I tried a few new strategies:

  1. I woke up and consciously gave thanks for what I did have and appreciate in my life and offered a silent prayer to the universe for compassion and strength in the day ahead.
  2. When my husband did not want to get up and going, I gave loving encouragement or whatever worked that day: his favorite breakfast, a short shoulder rub while prompting, or a visit from the kids to perk him up.
  3. Each time I felt disappointed at his response or inability to communicate with me the way I wanted, I said to myself, “He’s struggling right now so I’ll wait. With time and patience, things will improve.”
  4. I vented to a few close family or friends, but not to everyone, and not all the time. I made a point to ask how others were doing, and sought out humor so I could laugh every day! Healthy friendships are balanced.
  5. When my friends asked, “How can I help?” I tried to answer honestly and directly. “Would you please pick the kids up from school? If you go to the store, would you buy me a loaf of rye bread?” Friends love helping friends and they really love knowing exactly how to help. I always offered my sincere thanks in return.

It took some time and practice, but finally, I controlled how I chose to see my situation and how I reacted. And in so doing, TBI was no longer ruling my life. I took charge and worked hard to be consciously present, focused, and better adjusted.

At the end of the day, I felt thankful again that I chose kindness when I could have been nasty. I felt good inside because there was peace in the house and I knew I was modeling kindness and tolerance for my children — exemplary social skills that will fortify them in the future. I gave thanks for wonderful friends and family who stepped in to help when I needed it.

My girls were 14 when their father was injured. They are now 26, and I could not be more proud of the compassion, empathy, and good judgment they show every day. With hard work, we all moved forward together using every bit of knowledge and understanding we could muster to make a hard situation better.

Who’s controlling your life? You, or your loved one’s TBI?

Comments (15)

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.

I have been living with a brain injury for 12 years now (got it on age of 7 and im 19 now). I got my braininjury from crashing in a driving car and my emotional part of the brain was damaged (back of the head on the right side). In 2016 i made my last scan of my brain and there was still dried up blood and a scar on the damaged part, the accident happend around 2009. Life has been sh*t and a struggle ever since i had it. I remember being a great communicator and a lover of all things before my accident. After my accident communication became such a hard thing and also i would not feel a connection with people like i used to. I was ok with being alone and people would irritate and aggrivate me very easily. On school i was preceived as the quiet weird kid who people could easily make use of and most people couldnt trust me because i never really participated in communication (still a problem till this day, also for feeling connection with others.) I constantly got into fights, being switched from school to school, fighting and cursing felt like it was the only option left until that did not work out anymore so i started to ignore EVERYONE in my life even my family. I did not say a word anymore and only be angry with someone even when they said "hi" because i felt like there was no other option. It left me with a broken bond with my family that i just recently tried to start fixing, im seeing a therapist now ever since i found out that my TBI is a big cause of me having lived such a disguisting lonely life. I wanted to end it all i started using alot of drugs (especially XTC since this gives you a big love connection with humanbeings), and this has increased paranoia and obessive negative thinking even more than before i abused the drug. I also think TBI has lead me to participate into criminal activities to feel more acceptence and to take control over things that i shouldnt have control, but again that just what i thought because i had no social groups to participate to and i had 0 real deep connnections with people. Working out has helped me very much to go through life and to look forward to and its very mentally calming to have an intense good workout.

Last things i wanna mention is that with TBI its very hard to find pleasure in most activities and things in life that others seem to enjoy very much that i just couldnt understand. I have to force myself most of the time to "act" like im enjoying it to make others not feel uncomftorble with me and they will start preceiving me like im the "weirdo" and "the fun destroyer" while all i want is to walk away out the situation otherwise i would get angry at them for treating me different than the so called "normal people" at the activity.

Also i have been struggling with my facial expression people always ask me " why you look so mad", "why are you angry" , "whats wrong". While actually there is nothing wrong in my mind at that time but these lame people got to make a situation out of it which makes me wanna punch them in the face and make me want to say "shut the f*** up you dont know what i struggle with" especially for hearing the same questions already 100000 times in my life.

I want to cry writing all this life experience down, but my emotions are trapped and i have to accept living with this forever. An brainjury is never fully healable but you could see a therapist or ask loved ones for help and support. Hope this helps anyone who is struggling with TBI

I am the full time caregiver for my partner, I live far from my family, I don't talk to people, I see some strong woman here that I wouldn't mind having a few to share with. I would love to have support and be available to others who work hard to help people.- Thank you- SW

Thank you for sharing. I needed to read this.

Thank you for sharing such caring, positive, and effective strategies for a healthy mindset post-TBI. Modeling this mindful approach sets the tone for a household, encouraging health and stability within the turmoil and fear which may otherwise quite easily define the journey. Great perspective!
Pray. God knows your struggles and the challenges you and your husband face ever day. His help and mercies are new every morning, as your husband's mood, mindset, and trials.He knows exactly what your needs are even before you ask. His gift to us all is His Holly Spirit, who intercedes on our behalf when we don't know what to pray for . Your husband's TBI was part of God's plan, and he will grow in faith because of it, as well you. ♥
I am happy for you that things turned out well! I am my 35 year old sons sole caregiver for 17 years. He is total care. I struggle with depression daily because there is never any end in sight. I don't have to worry about friends asking to help that stopped about 16 and a half year ago. I am very isolated and have no friends. People are uncomfortable around us I am sure because my son is not "normal". We do go out but it's always a struggle because of wheelchair issues etc. I love my son dearly but the daily struggle just to exist is overwhelming sometimes.
I do my best every day. I do not like the statement that it was part of God's plan.
Thank you so much for reminding us that a negative mindset doesn't help. If you're feeling frustrated as a caregiver, stop to think how frustrating it is for us survivors! I won't bother listing the many disappointments and frustrations we face all day every day, you are well aware of them I'm sure.
It sounds great on paper, but you really have to get in the right frame of mind to practice kindness, patience, etc. My husband suffered a severe tbi almost a year ago and it's very difficult to deal with, especially how his personality has changed-going from a laid back kinda guy to anxious, moody, and quick to get mad kinda guy. I try to stay very positive for my girls, ages 13 and almost 16 but hit is trying. Like I said good article, but very difficult to live with someone who isn't the person you married.
THANK YOU THANK YOU!! I always love to look at the positive spin. Postive breeds positive. I love the part of reaching out to a select few. I think this is important. The whole world doesn't need to know. Some days are harder than others being a caretaker. Why me? Why NOT me!!
My husband has a TBI and yes some days are most difficult. I believe that it tested our faith and love. Sometimes you never know what you have till you almost lose it. I'm grateful that my husband is with me still even if he is not the same. I miss the man he used to be, but am grateful for the chance to know who he is now. I saw many families in the hospital with less hope for their loved one and how the burden of being a caregiver was going to affect them. Some people were very hateful to their loved one. I felt very sad. Prayer goes a long way. If not for God I never would have thought I could handle this. I'm surprised everyday by strength and the closeness, and love my family have now. God Bless you all.
I think though, that some of the first strategies on your list are part of a normal reaction/ progression / stage of grieving. We are 7 months post accident. I'm still processing.
I suffered a TBI from a car wreck single car accident in the early morning of june 13,2011 on my way from working a kids camp to class at PITT i was ejected from car and life-flighted to urgent care at UPMC hospital, and thanks to my military medically experienced doctor, removed my skull, saving my life
Being a TBI survivor, I know how difficult it is for partners, caregivers, friends, family members. Hearing from the other side of the world is much needed advice and strength.
Thank you for sharing, these strategies have helped me to deal with my husband's brain injury. An attitude of gratitude makes all the difference.