9 Things NOT to Say to Someone with a Brain Injury

Marie Rowland, PhD, EmpowermentAlly
9 Things NOT to Say to Someone with a Brain Injury

Brain injury is confusing to people who don’t have one. It’s natural to want to say something, to voice an opinion or offer advice, even when we don’t understand.

And when you care for a loved one with a brain injury, it’s easy to get burnt out and say things out of frustration.

Here are a few things you might find yourself saying that are probably not helpful:

1. You seem fine to me.

The invisible signs of a brain injury — memory and concentration problems, fatigue, insomnia, chronic pain, depression, or anxiety — these are sometimes more difficult to live with than visible disabilities. Research shows that having just a scar on the head can help a person with a brain injury feel validated and better understood. Your loved one may look normal, but shrugging off the invisible signs of brain injury is belittling. Consider this: a memory problem can be much more disabling than a limp.

2. Maybe you’re just not trying hard enough (you’re lazy).

Lazy is not the same as apathy (lack of interest, motivation, or emotion). Apathy is a disorder and common after a brain injury. Apathy can often get in the way of rehabilitation and recovery, so it’s important to recognize and treat it. Certain prescription drugs have been shown to reduce apathy. Setting very specific goals might also help.

Do beware of problems that mimic apathy. Depression, fatigue, and chronic pain are common after a brain injury, and can look like (or be combined with) apathy. Side effects of some prescription drugs can also look like apathy. Try to discover the root of the problem, so that you can help advocate for proper treatment.

3. You’re such a grump!

Irritability is one of the most common signs of a brain injury. Irritability could be the direct result of the brain injury, or a side effect of depression, anxiety, chronic pain, sleep disorders, or fatigue. Think of it as a biological grumpiness — it’s not as if your loved one can get some air and come back in a better mood. It can come and go without reason.

It’s hard to live with someone who is grumpy, moody, or angry all the time. Certain prescription drugs, supplements, changes in diet, or therapy that focuses on adjustment and coping skills can all help to reduce irritability.

4. How many times do I have to tell you?

It’s frustrating to repeat yourself over and over, but almost everyone who has a brain injury will experience some memory problems. Instead of pointing out a deficit, try finding a solution. Make the task easier. Create a routine. Install a memo board in the kitchen. Also, remember that language isn’t always verbal. “I’ve already told you this” comes through loud and clear just by facial expression.

5. Do you have any idea how much I do for you?

Your loved one probably knows how much you do, and feels incredibly guilty about it. It’s also possible that your loved one has no clue, and may never understand. This can be due to problems with awareness, memory, or apathy — all of which can be a direct result of a brain injury. You do need to unload your burden on someone, just let that someone be a good friend or a counselor.

6. Your problem is all the medications you take.

Prescription drugs can cause all kinds of side effects such as sluggishness, insomnia, memory problems, mania, sexual dysfunction, or weight gain — just to name a few. Someone with a brain injury is especially sensitive to these effects. But, if you blame everything on the effects of drugs, two things could happen. One, you might be encouraging your loved one to stop taking an important drug prematurely. Two, you might be overlooking a genuine sign of brain injury.

It’s a good idea to regularly review prescription drugs with a doctor. Don’t be afraid to ask about alternatives that might reduce side effects. At some point in recovery, it might very well be the right time to taper off a drug. But, you won’t know this without regular follow-up.

7. Let me do that for you.

Independence and control are two of the most important things lost after a brain injury. Yes, it may be easier to do things for your loved one. Yes, it may be less frustrating. But, encouraging your loved one to do things on their own will help promote self-esteem, confidence, and quality of living. It can also help the brain recover faster.

Do make sure that the task isn’t one that might put your loved one at genuine risk — such as driving too soon or managing medication when there are significant memory problems.

8. Try to think positively.

That’s easier said than done for many people, and even harder for someone with a brain injury. Repetitive negative thinking is called rumination, and it can be common after a brain injury. Rumination is usually related to depression or anxiety, and so treating those problems may help break the negative thinking cycle.

Furthermore, if you tell someone to stop thinking about a certain negative thought, that thought will just be pushed further towards the front of the mind (literally, to the prefrontal cortex). Instead, find a task that is especially enjoyable for your loved one. It will help to distract from negative thinking, and release chemicals that promote more positive thoughts.

9. You’re lucky to be alive.

This sounds like positive thinking, looking on the bright side of things. But be careful. A person with a brain injury is six times more likely to have suicidal thoughts than someone without a brain injury. Some may not feel very lucky to be alive. Instead of calling it “luck,” talk about how strong, persistent, or heroic the person is for getting through their ordeal. Tell them that they’re awesome.

Posted on BrainLine October 10, 2012. Reviewed July 25, 2018.

Written by Marie Rowland, PhD, EmpowermentAlly. Used with permission. www.brainhealthconsulting.com.

Comments (418)

it has been 8 yrs. I was hit by drunk driver on my lunch hr going back to work...I never made it back due to that day. I sometimes feel down but never suicidal. Some memories remain implanted in brain and 1 was holding my brothers hand when he shot himself and he died. It seems most of those memories that were such a negative in my life will stay yet I sometimes search for the positive ones. After injury I found other family members who I learn who I can and can't trust completely and that is sad. How do others overcome this sadness?

My head went thru a windshield. The police blamed my friend and I simply because we were 18yo boys. We did nothing wrong, but the police didn't even give me a ride home or put me in the ambulance

Often arguments are started over things people have said to me...things I don't remember. I feel frustrated and at times fearful. Is this ever going to get better? I'm going on 3 years.

I still hear all of these every time I’m with the mother and sister.....35 years after the head trauma accident!!

I've heard many of these things from my (now ex) husband. The one I hated the most was "Stop feeling sorry for yourself."

I am just finally breaking through all the negative things people have told me...such as “suck it up” or “ it’s all in your head” really?!
I’ve felt so lazy, whiney, and just a bad person because I can’t be the person I know I really am!
I am in an ignorant relationship because of this TBI and am praying that somehow someday I will overcome! Bless all of you who are silently suffering and anyone who is wonderful enough to understand the difficulties of those of us who are living with TBI’s.

I find the most frustrating thing is when I am trying to explain my severe fatigue and memory problems and the person I am talking to says, "Oh yes, I know what that's like, I get that."

I hate that comment as well. I’m 53 and my brain tumor was removed 10 years ago. I know people start forgetting where they leave their glasses at my age. But they don’t understand what I’m saying.

Let them try living with neuro fatigue! I's chronic, debilitating & it just never ends! Only other TBI Survivors "get it".

I survived the accidents... I must now "Live with the Brain Injury and all the stuff that goes with it..."

It is not a "Stigma!" but discrimination in lack of: proper diagnosis; treatment; supports; understanding... and yes funding! Brain Injury still remains the Silent Epidemic.

We must continue to advocate for ourselves, others and those to come... those living with brain injury.

Surviving the accident is the easiest part in my humble opinion. I pray that someday, somehow I can provide support and education to others wether they be survivors, medical providers, or family and loved ones. This is truly a silent tragic condition and more public awareness needs to be brought to the attention of the public; nationally and internationally.

some days I think I would have rather not lived thru but yet now I was given a second chance, time for me to give back more than ever, give others the power of how to over come a t.b.i. im going on 7 years exact date 3/16

I was in a motor cycle accident when I was 16. I was bright charming and had dthe world by the seat of my pants and now after all these years I have finally figured it out. Its only taken 40 years for me to figure it out on my own, kind of slipped thought the cracks as far as treatment. I work 40 hours plus a week but the most simple things just sometimes just dont make sense. I have had a lot of jobs for this reason, but I keep going. My reflexes are not so good so have had some injures at work. I have a college educated family. Now I get the every day jobs. I take gabapentin 300mg and paroxetine 10mg. I went for 30 years on no meds Thanks for this web site I am grateful for this and what I have. I have been married and divorced no kids, now I just feel rejected from most. I just dont remember as much as I used to. Thanks for letting me write this, it feels good to say something to someone who understands. John DeMore

That is amazing!!! Bless you for having to deal with this all on your own!!! I’m curious as to were you around anyone when your accident happened?
I had a motor cycle accident 3 years ago in Florida, mine was in the middle of street and as far as TBI goes I’m not sure if it was called minor or what but I do know it was critical care. I had road rash and a broken collar bone too. I had brain surgery, was in a coma (6 days) and in ICU for 8 days so there were and are plenty of ppl around me. Ppl mean well but as soon as the bones are healed and scars are covered they forget. Out of sight out of mind!! Care givers are great as long as they have a career of it, because it is so stressful for them.
Ppl that are able to stay home and do for themselves, like me, everyone looks and treats you as though you’re normal. Which in fact I am except my brain doesn’t work right or like it used to. So when I say something odd that’s when I get the strange looks, side whispers to other ppl, subject changes and all kinds of things that makes it clear to me what they think.
I tried to go back to work, tried was ten months I shouldn’t have made myself try.
Good luck to you and thank God you have ppl now!! The Shepherd enter in Atl Ga is the BOMB for ppl like us!! Just started the therapy treatments!! Two neurologist after my accident told me there was no therapy for your brain!! Funny huh?! You would think brain drs were smart right, but naw just in certain areas of the brain I guess! One could have passed for a foot dr!!
Enjoy life, that’s what life is all about for me!!!

In 2010 I had my head sliced by a broken bottle and I never went to the hospital. Years later I have memory issues, difficulty concentrating, mood swings, depression, anxiety, sometimes i can't sleep, sharp pain where i have my scar and constantly having headaches. I was in denial that this was all related to my head injury and the more I read about TBI, the more I am conscious that I have to live with this. The only thing I can do is keep pushing for a better day and pray to God that it gets better.

I slipped and fell hitting the back of head knocked unconscious. I awoke in ER. No memory of the fall or being taken by ambulance. I was told I had a TBI with multiple brain bleeds. This was six months ago. My life has been altered. Constant headaches vertigo nausea ringing in ears short term memory loss. I lost sense of smell and taste. Now I have “phantom smells”. It’s an awful smell like nothing I’ve ever smelled. It’s with me 24/7. I breath and the smell won’t go away. It’s caused my nausea to worsen and it’s hard to even eat. I stopped cooking especially anything in oven because I forget I put it in oven and I can’t smell it when it starts burning. I lost my job. I lost my car. The worst is I’m losing my family. My daughter gets agitated because she “wants me to snap out of it”. My sisters just don’t want to talk to me anymore. I’m about to be evicted. The chances of my daughter taking me in is slim. All of this is one year ago I had open heart surgery. I went into heart failure. I had a bad mitral valve that caused my lungs to fill up with fluid. I had no symptoms prior other than occasional palpitations. I was a basically healthy working 53 year old.

Now I’ve lost everything, my family, and losing hope.

I would gladly go through open heart surgery again if I could rather than what I’m going through after my TBI.

Trust me. If I could “Just Snap out of it” I would.

THERE IS HELP THERE CALL YOUR STATE SOCIAL SERVICE OFFICE !

I had a brain tumor removed years ago. I have problems too. Good days and bad days. Its hard to talk about it. Because you can't explain whats going on. I still have bad headaches. Learning some thing new is very hard. It just gives me headaches and frustration. But I am still here. People and friends can help sometimes. It takes time.

Well, this is how family is. Before I had a stroke I was a child prodigy, studying literature, linguistics and philosophy, I remember my mother would wake up to go to work at 7 a.m finding me in my desk, working on a paper or a study. The hour after I had my stroke people disappeared like flies taking off at the sight of motion. This is because a) they don't want to take care of you (well my mother barely took care of herself, this how losers are even when they are healthy) and your misfortune bums them down. You'd think being humans they would be all understanding. But, after my stroke I realized people are no different than wild animals, if you get injured your herd will leave you behind. We should teach our children not rely on others, even their mothers. When you are healthy people will be all over you making gestures of loyalty and love, but when you get sick they won't remember your name.

Hear you!

In the past new people you met were sometimes interested in doing things with you. Right? Now, after my Sepsis coma (which is similar to stroke) where are the friends?

Yes, people are like animals, you find out, just like you said. Luckily, my spouse has stayed loyal. Live far from my grown kids, one granddaughter & even they are not calling on the phone, except on rare occasion. Text w/ my daughter. That's about it. At least it's something. Yet, it's very true what you are saying:

"If you get injured, your herd will leave you behind."

"...the misfortune bums them out."

"When you are healthy people will be all over you making gestures of loyalty and love, but when you get sick they won't remember your name".

I am so sorry for the tragedies you’ve gone through. I do not have a TBI, but I do suffer from depression and have been told to be asically “snap out of it”, so I understand a little of what you’re feeling. My mom would tell me to “just make yourself feel better” and “count your blessings”. Though well-intentioned, that just added to my feelings of guilt and despair. I wish your family understood what you are going through. There’s no way to explain it to someone who hasn’t experienced it. Do you have a church family or a support group you can reach out to? Don’t try to face this alone. If your family isn’t receptive, find someone who is. Maybe your doctor can recommend somewhere/someone that could serve as the support system you need right now. Advocate for yourself. Keep searching until you find the people and program that will help you get through this. Remember, it won’t always be like this. This is a temporary journey you are going through, and afterwards things will be better. Never lose hope.

I do not suffer from tbi, but my husband does. He doesn't cope good with stress of any kind and makes him irritable and mad. Can anyone tell me what I can do to help him?

I would like to offer you some hope. I have learned how to live my life after suffering a near-death head trauma in a car accident when I was 18 1/2 years old. My brain was very swollen, I was unconscious. Due to new medical procedures at the time, 1981, I was kept unconscious until my brain had returned to normal size. I had to relearn everything, as many people have also shared. Anger, frustration, and other emotions were easy for me to use to cope with everything I was relearning. So, with cognitive, emotional, and physical therapy, and a patient family and circle of friends, I made steps to recovery. Now very few know my struggles, but I needed to have a reliable schedule, and an organized life so I knew where everything is. So offer your skills of reliability, organization, patience and love, it makes a very big difference. Stay strong

In my personal experience, it's not the stress per se that angered me. It's that the brain no longer functions as it used to when experiencing stressful situations and when trying to connect dots and process received information. At first, I tried ignoring that I have brain injury which did not help at all. Then I spent a long time trying to find ways to cope with it. For me, I found it helpful to gradually re-learn how to deal with stress, understand that I've changed and slowly re-adapt. When I e.g. don't feel like dealing with something at the moment, I leave it for a while and do something else before I take it up again. Also do I try to identify what kind of situations make me stressed and what it is about them that makes me stressed, and I try to avoid them until I'm better and/or I've had time to process them and they no longer stress me.

Also do I sometimes stop and give myself a moment to process something that I've read or something that somebody has said. If they ask me why I'm looking non-understanding, I will admit that it's bcz I'm processing the info. I expect that ppl will understand since it's not a problem that I can help having.

I also found that relaxational activities and/or physical activities, of a kind that allow for stress-release without causing stress or damage and without placing any demands on me, were helpful.

For the loved ones, it's sometimes extra difficult bcz they take the anger and irritation personally even though it's not aimed at them. It made me sad that my loved ones thought that I was angry at them when I lost my temper at somebody who is trying to be supportive. It's imo not bad to remind the person with the brain injury that one is aware that it's not aimed at oneself.

Since being mad and irritable imo causes more damage to an already-injured brain, it's a good thing to try to avoid that. I personally think that unfortunately must one do a lot of the work oneself and that the best support loved ones can offer is to not be judgemental, to not take anger and irritation personally and to offer relaxational activities and activities that allow for stress-release without placing any demands; to be a partner and a friend, at least in my experience.

I hope that it will help and I wish you the best of luck.

My daughter was in a car accident three years ago and she's recovering from TBI. In the beginning she was very frustrated and would get angry easily, our state passed medical marijuana shortly after her accident so I got her licensed and it has helped tremendously in controlling the anger associated with the symptoms of TBI. There is also CBD. It's becoming widely recognized in treating many disorders and treatment for pain as well. Hope this helps and God Bless you and your husband.

I had 2 strokes last year. Realize my husband is tired of me not being able to do like I used to. but I am trying to recover. Lots of trouble thinking straight.
But being called names and being told I am lazy does not help. It makes me more depressed and angry. I try to do my own housework, but can't climb on a stool yet or lift heavy things. I can't get out and work in the yard like I used to but I try. Need to talk to someone who understands so I know what to do.

Oh wow, this whole article rings so true to me. I’m glad I found it. I got my ABI at the end of last year. What gets me the most is that mine is an invisible injury, I don’t have a major scar on my face/head just a couple tiny hidden ones. It sounds ridiculous and I should be thankful (and I am!) that I didn’t need surgery on it so I don’t have an obvious scar. But sometimes I think how life would be so much easier if my jaw scar was moved higher up my head. Cause then people would understand better why I’m like I am. And they wouldn’t just assume that I’m being lazy or stupid or purposely difficult, Even the ones that actually know of my accident and resulting injuries! I have the most difficulties with my mood, memory and fatigue. Which just gets in the way of my life and others lives. Then you get the “stop being so lazy” or the “You know you should try culling or cutting your medications, you might get better if you just think positive and eat healthy instead.” (I do eat healthy, I’m a vegetarian you kinda have to eat healthy!) You try and think positive thoughts when your struggling with depression and self harm! And nothing but time and prompts will help my memory especially considering that part of my brain is one of the areas that got the most damage.

I totally agree with you. I got a TBI from a stroke I got when i was 11, but i realized that trying to be happy with what you have has made it clear to me that what other people think of you is not important. This does not define you not in the least. I don't know about you, but what helps me the most is reading Bible verses.

It's really sad that no one in my family believes me. I was hit on the head with a two by four as a child. By my stepmother I have scar tissue on the right temporal lobe of my brain. I am bad in math and spelling even to this day, sometimes my husband asks me a question and I must think of an answer and he gets mad at me. For I take sometime coming up with an answer for him. I wish to know does anyone else have the same problem in answering someone? I feel so alone at times no one understands me. Everyone in my family thinks I am crazy why don't they understand the way I feel. Can anyone out there help me?

sometimes I do. the more exhausted the slower I get. my spelling gets worse. and words get hard to find. it can take over a minute to find the right word. complicated open answers can be harder to work out and say. basically, everything is slower. it is one of the signs of fatigue, when you notice it you just have to slow down and space your answer....like....just....doing....this...between sentences....and....words. difficult words.....become easier......to find.

Oh that sucks, I kinda know how you feel with answering questions I can’t always work out what the main focus in the question was and quite frequently I loose words mid sentence and can’t think of the word (even commonly used words) So then I get stuck and I can’t complete the sentence until I find that word or another word to replace it. Have you looked up brain injury support groups in your area? I go to one and I didn’t think I’d find it helpful but I did, being able to discuss my everyday challenges with people who understand completely what I’m experiencing is actually very freeing. And we share our different strategies for dealing with the everyday challenges of brain injury life so that we can help each other if all we’re currently trying doesn’t work. That and it’s just nice to talk somedays and not feel judged (especially since I struggle with my decency filter)
I hope all goes well for you that you never have to feel alone again. All the best

Before I was diagnosed and treated for a severe TBI, I regret how people "family/friends" tell me how different I am now, well maybe I found myself and you don't like it, because I am NOT you and I don't live to your standards, which aren't mine.

Telling someone with a brain injury "that they are strong, persistent, or heroic the person is for getting through their ordeal. Tell them that they’re awesome.", does not help. I have a brain injury. I just want to have my brain the way it was before my brain injury. What really helps is if people pay attention to their tone and facial and body language. If people say, I believe that you are experiencing what you say you experience and that it is difficult like you say it is difficult. Reiterate what the person said with I believe you. My injury is difficult for me to show people, lawyer, opposition lawyer how I have trouble coping. I do not want to continually keep myself in a state of thinking about the negatives and yet to prove my case, I am being forced to continually look at the things that I have difficulty with. About my misgivings. In my lawyer's office with my so called "worker" and my Mum, My lawyer laughed as he said to me, my don't you have your cell phone wrapped a lot. They all laughed. I had it wrapped in a hankerchief to protect it. I did not find that funny in the least. I had lost the small sack that I put it in. And now I am being mocked in front of people. Not funny at all. I am embarrassed enough, I don't need people revealing my insufficiencies and then laughing in my face about it.

I am a TBI patient of 22 years. I can strongly relate to the things not to say to a person with a TBI. Another is to not ignore. Some of us are much higher-functioning.

I am almost 2 years out from my TBI due to an accident , I had an emergency craniotomy on 9.11.16. My surgeon and my neurologist were great at first but I had no insurance at the time. My aftercare consisted of a pamphlet on survival but I had zero therapy. My wife of six months at the time, was and is supportive but I fear she has reached her limit with the residual issues. On the outside I look fine, my hair covers the scar, I hide the facial symptoms well but it’s a daily struggle not to eat a bullet. I can’t remember my mother’s or sisters faces, they passed years before. I suffer from debilitating headaches , memory loss, fatigue, bladder and bowel control issues and depression. I developed seizures within a month of my accident and surgery. I was a soldier for 23 years, a very proud man I was. Now this shell I live in is a prison. My wife and stepson suffer untold misery because of it. My support system consists of only them. The financial stress is so severe that there are days I don’t eat so they can. I take 3000mg of Keppra, 400mg of Lamictal, 3mg of Klonopin daily plus Tylenol for pain. My neurologist said last visit that I will be on medication for the rest of my life. How am I supposed to do this? How can I ask my wife to endure the stress and suffer with me? I wish for death hourly. I lay in bed for days, when I try to do anything physical, I have a seizure. I need help before I put a gun in my mouth to just help my family go on.

Please don’t give up; it does get better. Please do persist in getting help. Some states offer so much more resources, there are more out there but hard to find and your health just makes it harder. But get a social worker to help if you can, they are supposed to find resources for you. Please know, your wife does love you, and you can have a better future. I’m a wife in a similar situation to yours. My husband is profoundly changed, basically a new person. But he’s four years out, and he is getting better. He has a long, long, long way to go. But he can get there. Please educate yourself about the benefits of a Keto diet for both brain injury and seizures. You sound like your struggling with major depression; you can get better!!!! Really you can!!!! Don’t give up, breathe, pray if you do, mine will be with you

Ask your nerologist if you can take a lower dose of Keppra (I am not a nurse/doctor) but I DO know what the side effects of Keppra can do to you. I have nothing what you are going through, but all these things about suicide and depression is the Keppra. I wish you luck, love and health

I know exactly what you are going through. My symptoms mirror yours.

I have been unraveling for five years now. Reaching out for help has been a nightmare. Crisis line doesn't serve specific issue, VA multiple phone prompts, put on hold, voicemails not returned, 'not my department' rhetoric, nonqualified employees, lazy or unconcerned deadpan voices, unneeded advice from people that do not have a clue. I have been traumatized by the very system designed to help me.

2 months ago I worked up my pride and courage to go to a VA clinic in Bettendorf, Iowa. After explaining to a mental health expert that I was in full-blown PTSD meltdown. The unconcerned deadpan voice said, "I'm sorry you need to go to Iowa City. We can't help you here... (yawn)". I explained that it's an 80-mile trip, that I couldn't see well, and explained that I am having suicidal thoughts... (yawn) and I am in danger crisis. My TBI and PTSD mode is now Superman on steroids! I'm pissed and highly agitated.

I hang up, throw my phone against the wall exploding into shards, decide then to go to the E.R. at the local hospital...."I'm sorry we don't currently have a mental health specialist on shift." Fuck you! I then drive to the deadpan voice at VA clinic in Bettendorf Iowa. I was immediately confronted, face to face, with yepp....deadpan! "I told you to go to Iowa City." I refused to speak to the twit and complained to the receptionist that I am having severe chest pains.... BAM! Code called over P.A. system "code blue!" EKG hooked up (portable, dusty and out dated). Yep, blood pressure in danger zone and heart rate extremely high. Head is swooning and I'm sweating profusely. (I am physically fit) I then hear. "OK. Put your shirt on and take a seat in waiting area." Am I in hell?

Finally called into a office of rushed mental health garu awaiting gate departure. Whispering among VA employees and I hear "go down to blah blah room for blood test." OK...I'm floating and swooning, confused and pissed. The blood drawer only takes one vial of blood and I ask "what are you testing for?" She whispers "alcohol. They think you're intoxicated." Done.

Long story short I am now facing 30 years in prison. Never been charged with any felonies in 56 years. They say I shoot someone twice. Dead pan voice....2 class x aggravated battery charges. 15 years per shot. Game over. I appear for preliminary hearing on August 28th 11 am Rock Island County. Enter deadpan voices of money hungry lawyers. My home, my animals and freedoms gone. I spray painted my beautiful home with words I don't remember. Neighbors are terrified because I posted $10k and out on bond on $100,000 dollar bail awaiting my fate or should I say dead pan voice "seeking carotid artery? "

Lg, I was horrified by your experience, the trouble you are now facing and having to deal with so many unhelpful, apathetic, deadpan people - how incredibly Frustrating!! I hope you can find some help/support through this

Lg,
I'm so sorry that you've hard such a hard time getting the help that you need. I'm unsure if this information will help but here are two free legal resources for veterans:

Public Counsel Center for Veterans' Advancement
213-385-2977
http://www.publiccounsel.org/practice_areas/center_for_veterans_advancement
They provide advocacy and direct representation, or representation through probono partners, to veterans and their families on the local and state level.

Stateside Legal
For Veterans, call (213) 385-2977 x301
http://statesidelegal.org/
They assist service members, veterans, military families, and advocates access benefits, find free legal help, and better understand legal issues.

Eric, I'm 10 years post Severe TBI. I have found that I do better year by year. Couple of things I would ask about. I was on Keppra for seizures. Anger issues about had life get away from me...and I did a 72 hour Mental Health hold at the local hospital. Best thing that has happened to me! The staff Psychiatrist changed my "anti-convulsive" from Keppra to Oxcarbazepine. Reason, Keppra gives the brain almost no time before things go off. Oxcarbazepine is not only an anti-convulsive but is also a "mood stabilizer". I take 900 mg a day. 300 mg in the morning and 600mg in the evening.

I don't recognize the other meds. But I'm now taking Venlafaxine, an anti-depressant, 150 mg tablet in the morning. WOW....I haven't felt this good in a very long time...if ever.

I take Clonazepam, an anxiety med, when I need it. Or mostly when my wife sees my behaviour and know I need one. I see that you take Klonopin which seems to be the same.

I would suggest talking with the Drs right away on the Anti-seizure meds. Why are you taking two different ones? My Neurologist prescribed the Keppra and 10 mg of Venlafaxine. The Staff Pyschiatrist at the hospital laughed. The Keppra didn't give my brain time to "think" before getting angry and the 10mg dose of Venlafaxine was way, way too small!

I'm no Doctor, but after 10 years I have lots of experience as a TBI survivor. So let me ask a few questions:

debilitating headaches - Have you spoken with the Drs on a med like Imitrex that will kill and incredible headache in 30 minutes? I have gotten migraines throughout my adult life. And have Imitrex. But PCP thought NO. Neurologist and Psychiatrist don't see any problem with it. And after 10 years, I'm OK with it. I take 100mg Imitrex when a headache begins to develop

memory loss - I've had an EEG and about 1/3 of my brain is just "Scar tissue". No longer electrically active. So things I could always remember...some times take a couple of days to pop into my brain. So what. I'm getting good at using Samsung Notes on my phone to keep track of things and Google calendar on my phone to keep life in order. And yes, my wife, my most wonderful caregiver helps me stay on track.

fatigue - Yup, every TBI survivor deals with it. The reason, as your brain rewires itself it often takes more sections of your brain to complete a task that used to take just one section. So I keep getting better. But I get up at 6AM, shave, shower, dress and by about 6:35 I'm out the door to one of two mens breakfast group. I continue to be amazed at how much better life is if I have "routine" up, out, and meeting with others. Nope I don't have a lot in common with either of them. But I listen, ask questions, and am accepted. It works...get out and do it!!

bladder and bowel control issues - these ones are no fun at all. For the first eight years, there were times my brain gave me a couple of minutes or less that my bowel was going to move. What a mess!! So I tried to prepare, and worked to accept that it happens. And as my brain rewiring continues, it doesn't happen very often and I know how to deal with it. If you're just lying in bed...that's the worst thing you can do!! As your legs get weaker the pelvic floor muscles get weaker and there goes bladder control. Just wear Depends while you're in recovery and accept that life will get better, and if it doesn't...well you can deal with it!!

depression - This is a biggie for me. I have to work to be aware of it. And my wife is very good about asking about it. Go to a Psychiatrist and talk about what's going on in your life that is causing depression so that you can deal with it. The Venlafaxine is also very helpful. Who cares if I'm on it for the rest of my life. If I'm feeling great, that's what matters. Yes, it can give you an awesome case of Anorgasmia, but there are ways to deal with that too!!

My most important thought to you Eric...you gotta get off your ass and get back to living! What happened, happened. You may, like me, have to accept that who I was pre-TBI died that day and I have to discover who I am now and get on to living. Looking back a decade. I'm doing better than anyone thought I would. And that's because I refused to quit. This is my life and I'm going to make the very most of it I can. Yes, its full of pitfalls and some failures, but I just keep working away. And enjoying looking back each year at how much better I'm doing!!!

Dear Eric,
You haven't gotten the medical help you've needed to recover, and that isn't fair at all...! I don't know what state you live in or if they have a system or organizations to help, but please reach out and ask for help. Life can and will be better than what it is right now. I would say to be patient, but you have been, and healthcare isn't treating you right. You have every right to be angry. You deserve better care. I wish I could help you. I came across your message and it broke my heart. Please remember in the dark moments that it will get better. Everything changes. Heck, even when we don't want them to, things still change. Please remember that no matter how frustrated other people get that they still love you just as much. You're being way too hard on yourself. Be kind to yourself. Please, whatever you do, Don't check out. It's time to fight, demand the care you need.
Sending peace and healing across the Internet to wherever you are.

Laura

I feel for anyone who lives with TBI. There are definitely multiple perspectives and not everyone is just an inconsiderate asshole by default.

As someone who works with someone with a TBI, it's impossible to know what they do or don't remember and of course it's incredibly difficult to be the punching bag for their anger. I have compassion but when shit is thrown at you daily and they blame you for their shortcomings, it's challenging to continue to show compassion. It's challenging to help someone as much as you can and just be screamed at, belittled, blamed and accused of sabotage.

How much do you allow someone to abuse you because they suffer from TBI?

My fiancé was hit in the head by a falling heater he has been hearing voices that won’t stop he gets a loud ring in his head for hours is this something that is unusual for head Trama ?

I suffered a traumatic brain injury 32 years ago. I was not aware of the moodiness, anger, or frustration I go through daily. I believe that with my not being able to always see what everybody else considers not "normal", as my fault. Suffering such an injury has closed many doors for me. I am trying to better myself and grow. I am thankful for all these sites that allow me to learn and grow.

I was shot in the head while protecting teens from gang violence. This article described my sentiments perfectly! I shared this article with many of love ones so they can understand me better with this very precisely articulated article. Thank you!

I have been dating a man with a TBI with a severely narcissistic personality for 4 years. I am a nurse and I feel a very caring person. I have struggled to prevent the suicidal ideation in my own life due to the constant negativity and anger management issues that he struggles with daily. There's no rhyme or reason to the moods. I actually moved out for 6 months and then felt like I could handle it and came back. The worst part is I have a daughter who is 7. We both love him but we are getting hurt so badly. I always felt I was never a quitter in life. I could always see the good even during my worst days. I have always battled depression myself. I don't know what to do anymore. I love him 200% but I'm not sure we can handle what we are all going thru. I feel that I'm going to have to love him from afar for my own sanity. Need help. Not sure what to do.

He needs Psychiatric help. Not counselling. Someone that can better delve into what's going on and can prescribe medications to get things on track.

You didn't comment on what medications he is on. But he needs to be on an anti-depressant like Venylfaxine. That's what I take, and I take 150mg a day. Most people hear that dosage and are "wow". But I dropped back to 100 mg...and just like that my wife noticed a negative difference. So back up to 150mg and life is better than is has been in a long, long time. I am 10 years post Severe Traumatic Brain Injury.

Each year I can look back and think that life is better than the one before. The first few years are just awful. The brain is rewiring itself as best it can. That means mental fatigue will be an issue for the rest of his life, like mine. I have to be aware that by about 4PM its time to sit in my chair and read, play games on my phone or watch TV. If I try to continue working on something, things go wrong, I get angry, and nothing is gained. But I do have Clonzapam 30mg to take for the anxiety when things start to go off the track. He needs to see either a Neurologist that deals with TBI patients or a Psychiatrist that will working with TBI survivors.

One thing he must come to understand is that who he was pre-TBI died that day. And now his quest is to learn who he is now and how to manage life. Can't keep going back to "I used to be able to". Because that's gone now. But learning how to do new things...provides a great sense of accomplishment.

Its also very important that he get back out in the world and socialize. You his caregiver are not the right person. I now belong to two mens breakfast group. I have a high school classmate that introduced me and got me started. The rest of the men in both, I don't have that much in common with. But I go and listen and ask questions...and all have become aware that I'm a survivor, and all take the time to answer my questions. I may not understand the answer, I'm not a sports person and one group are all retired high school coaches. So what. It gets me out there. I have breakfast at 7AM, five days a week. I have friends that if I bump into them out in the world. We always share a hello, how are you. That's very important for a TBI survivor. To sit at home invites dementia into the brain, and that is a disaster that everyone should do their best to avoid. How? Keep the brain active. I belong to four online forums that revolve around things I like to do...that keeps me searching for answers to others questions...because I have some time.

Its also important that you attend some of the Psychiatric appointments, but not all of them. I found that sometimes its important for the Dr to chew me out and get me thinking, give me things to work on. Sometimes it will be important for you to be there, so that you can be honest and tell the Dr what you are seeing and experiencing.

Yes I ramble some, but...I'm a survivor and I do my best!!!

Seek professional counselling to learn how to handle the mood swings. My boyfriend committed suicide 2 years ago .My situation sounds very similar to yours... The love was there but needed off the roller coaster... I miss him so terribly and wish I had sought help.. I feel like I failed him so badly. I also being a nurse should have realized the mood swings were to be expected. I did not educate myself enough and just took everything personally. Sounds to me he's someone you really don't want to live without... Do whatever it takes...

Hi Annette, I have a Girlfriend with a TBI. She is very similar to your husband in regards to the constant negativity and anger management issues she has. Now we don't have any kids but from my own experience I did have to take a step back and love her from afar for my own sanity. I love her so much and it was the hardest thing to do. We stopped all contact for a couple months at first and it really helped me mentally because it was like walking on glass before. I completely understand what you are going through and if you have any questions or anything you would like to know I would be happy to help :)

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