The Real Truth About Brain Injuries

Dixie, things are so much more complicated than just a quick story you can read in an hour, a day, or a week. You have to live it to get it I'm afraid. I mean no disrespect to my additions to your story and my comments. Your son moved out of your 24/7 and I only pray someday my son can reach that far not only for me, but for him. You know we love you for your helpful knowledge and honesty, as you lie. As we lie, we are also honest. Sounds like a contradiction but it's not when you live it. Read on:

Her son moved out of her home, to the big city. I can only imagine how that will go, or not. He's gone and her life has a small sense of relief, for now, maybe forever if she can help it, so it seems by her story. She had a husband and 7 other kids that in some ways eases the loneliness associated with a single parent/caregiver regardless of how alone she claims she feels. After all, she is a liar by her own admission. We have to be as a defense mechanism. Even with other kids as we know there is no "real" lasting help. It's more like a chore to the others and they distance themselves and blame anything and everything they can so they don't have to actually have to deal with it, not as a full-time caregiver or even a part-time caregiver. More like, I'm going to take ( TBI'er) for a walk, or to the store, or less. A few times a week or month or a year at best. As little as possible. As in my case years pass and not even his own mother will spend one second of time with him. It hurts too much, she's too busy, it's my fault he acts the way he does, his medicine makes him crazy, the list goes on, the neglect persists and they will find a reason not to be involved no matter what.  It takes work and the one they loved is a shell of himself, mentally incapable of what they want him to be. He will never be that because he has severe permanent brain damage. No one seems to get that. Calling it a brain injury is in itself a sugar-coated description. Call it what it is for God's sake - SEVERE PERMANENT BRAIN DAMAGE. I had someone not long ago ask me what exactly that meant because his behavioral issues are out of control. Once I explained, brain injury is "severe permanent brain damage" it was as if a light bulb went off. Oh, he said, now I get it. It was not his fault. He was uneducated at what TBI is, like 99.999% of the population. Oh yes we/caregivers/ I continue myself to live in denial in many ways he will and can get better. At what point does a parent quit or give up? I see small fractional improvements that never seem to last long but some do. As an everyday caregiver we notice every tiny thing and pray for those small improvements. That's all we have. We can't just quit. If we did then what would happen to this person, our child, one we love. His friends, sisters and own mother are busy and never looked out for him and never will. The system has very few, or nothing to offer. Most programs that my son has tried want a person who is docile, maybe a concussion, and an easy case but not someone that really requires you watch them and are difficult to deal with. More medicine to make them zombie-like is the answer isn't it? No, if they are medicated to that point what chance do they have to ever use that damaged brain and learn, to make improvements? That option is diminished greatly. We press forward, pray and be thankful for every day even though it's unbearable at times.

I'm a mere caregiver that has experienced every single thing you write about and more.

Thank you Dixie.

thank you for your article it was insightful. I had a TBI or ABI whichever acronym you like to call it as a 10-year-old and was not supposed to live like your son. Fortunately, I have made a good recovery and I live a life that to me is full and active and fulfilling, not without its challenges and the cycle of depression and anxiety that I ride never goes away.

It took approx 20 years before I could say that I was fully whole again, but since then I have studied three Masters degrees and a graduate certificate and worked at some very challenging jobs.

I have tried hard to understand the impact my accident and life has had on my family and my parents but am unable because to do so diminishes my achievements. Perhaps my life and that of my family would have been different but I don't know that for sure. Just like I can't say your life would have been any different if your son's accident hadn't have happened.

I have worked hard to accepts what occurred and I wake up most mornings knowing that in many ways my life is better because I have had a mostly loving family about me. It is my turn to give back to my aging parents now and I am learning how hard it is to do what they did but it is my life and I have to go on and accept it.

I wanted to say thank you for sharing your road is hard but don't mourn what you son may have lost celebrate what he has and has achieved because that it all we have and all we know.

Thank you Dixie - for sharing in such an honest, raw, emotional way. this is the part no one wants to acknowledge and the only way to heal is to look at the dark side of it, the costs of what is happening to the caregiver as well as the survivor. I don't know how to ease your pain, other than to listen & affirm. I too, don't have the answers, I keep asking God for something closer to normal, something a little more focused on my desires and wants - which I think you are also asking for. I pray that you have some peace and that, with time & patience, you will find a new sense of peace & purpose for yourself, now that things have changed for you & your son. It sounds like you could use a vacation, until you don't need a vacation - just time to reflect & figure out this new Dixie and the "real" next step. Again, thank you for sharing the "not so perfect" reality, no shouting it - we need to hear this part too, for validation and to remind others about the hidden costs of BI. The surface is not always what it seems...... we need to do more than survive, we need to thrive too. I mean, caregivers need to find their hopes, dreams and a new way to thrive & live life again......the secondary trauma can be more devastating than the initial injury. take care, Dixie..... I hope the best is waiting for you soon :)

Julie

My husband survived a cerebral aneurysm that ruptured. This type of cerebral accident has a 2% survival rate. After 31 days in ICU and 2 weeks in a step-down unit, he was sent home. No rehab, and with no idea of what to expect. I was told he should have died and to be thankful for each day. I don't know how to deal with the mood swings, depression the anger he feels. He has no desire to get out of his recliner to bathe, to walk the dogs or just to live. I work full time and manage the inside and outside of our home pay bills, shop, cook do laundry. At times worked 3 jobs to keep our daughter in college.

My oldest child is in the military and is being medically discharged. He has a TBI and severe PTSD. He is so angry and feels like his country has abandoned him. What do say to that? The care he is getting is substandard at best.

So when I read your book Cindy I could not relate to the positive tone. I relate to this post because to me it is a more realistic picture of what it is like to be a caregiver for anyone with a brain injury. I don't want anyone to feel sorry for me, but to know what the brain injured have to deal with when on the outside they look normal. Sometimes it is an invisible disease.

I hope we continue to reach out to one and other and to pray for each other.

Marianne

As a shock trauma nurse who has "helped" many families through the initial part of the brain injury, I find this particularly refreshing and brutally honest. Brain injuries forever alter their personality, thought process and perceptions often leaving an unrecognizable human behind. They are of our flesh and blood but at the same time not humanly familiar. The sad truth is that the person we knew as a son, father, mother, lover, husband or wife, has died at the point of impact---this is a new person that is left. And sadly, sometimes we don't like this new person.....and that's ok. Forgive yourself and find out how to love differently, safely. Brain injuries continue to injure beyond the impact, like ripples in a pond when the surface is broken.

I have Traumatic Brain Injury (TBI), PTSD, possibly Chronic Traumatic Encephalopathy (CTE) and repeated head injuries symptoms from football. I'm my own caregiver. My wife died in 97', with a 5 and 6 year to raise.

I knew that something was beginning to happen me, but nobody would listen. Thank "God " I have respectful and intelligent young men now. One 24, in the U.S. Navy, and the other 23, on a scholarship in Mech Eng at Texas A&M.

The NFLPCF has tried to help, but they say I'm too complex and won't deal with me anymore.

All that you went through has to get around the TBI community. You're a brave and mighty powerful woman. I live with mom who 82 with Parkinson. My stepdad waits on her hand and foot. He's out of town now, so now it's my job. It's rare to have understanding caregivers and children. Great article.

Scott Boucher
Retired TBI and CTE Athletes Foundation
www.RTCAF.org

Thank you for writing about this... I have a TBI which I acquired as a result of a brain hemorrhage and brain surgery due to an AVM (Arterial Vein Malformation) rupture. The ignorance about my TBI, my "invisible disability" can be maddening at times. However, after 11 years, I am FINALLY learning to accept what I cannot change and to chalk other's attitudes and judgments about my brain injury as sheer ignorance and arrogance.

The good news is that I DO continue to get better and improve every day... even after 12 years! My disability has changed MY OWN ATTITUDE about others and THEIR disabilities too... I think that I used to "assume" that I understood what others experience, even if I didn't articulate that, I think at some level, I believed it.

Today/Now, I am much more compassionate and I try very hard to remind myself that I really DON'T KNOW what others are experiencing/ going through and to just try and have "compassion"...

At times, I have become isolated from others, so it can be awkward when I feel entrapped by friends or acquaintances as they sometimes persist on asking curious questions when all the while I’m secretly thinking that they could never, ever, ever possibly understand the magnitude of the real answers.

This really resonated with me. It's easier to say "fine" than to try to describe the loss of a person STILL IN THE ROOM WITH YOU to someone who cannot possibly comprehend that.