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 th ings 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 (425)

I was hit by a truck while on a motorcycle in August of 2013. I was thrown 58 feet. I literally was thrown out of my shoes and socks. My leg came out of its flesh and broke the bumper. My head broke the windshield (no I didn't have a helmet on). I remember everything until the ambulance came. I have since met by chance the doctor who lived on the street and saved my life and the policemen who was the first responder. I met them months after the accident in public by chance. I recognized them. They thought I died. They said it was a blood bath. I had many operations. Shoulder replacement, pins and screws in my hip, thigh, knee, calf and ankle. I dislocated my other shoulder and fractured my back and neck. My scalp was peeled back and sewn back. I have a traumatic brain injury. Why am I writing this ? I guess it feels good after almost 2 years to put the accident in writing. I am not mad. I do not seek pity. I am back living at home with my wife and 2 sons after months of hospitalization, living in a rehab facility and much physical and mental therapy. My life and the life of my wife, kids and family will never be the same. I really don't know how to end this post and put a big bow on it. I guess it could be a lot worse. But I guess it couldn't have been at all. But it happened. I am alive and happy for that !!! For anyone else who is going through a similar event or has a friend or family member going through a similar event. I am there for you. Really I am.

To the people who replied to my question and request for advice on how to support and reassure my husband following his accident - thank you so much. I have read both replies over and over and will take and use your advise. Thank you for taking the time to help Many thanks

It's been over 10 yrs since my car accident caused a head injury. I see a therapist since my accident. I have short term memory loss, brain damage . It hurts so much when family gets frustrated with me . It is so hard to try to make people to understand..I've been told by family to stop bugging them because they feel like they have another kid, can't you think for yourself? Many other hurtful things have been daid to me. But do they not realize how hard it is? To try and tell them any conversation you cannot and do no longer able to say the correct thing you want to tell them and some other sentence comes out .I remember how confident I use to be . And that it bugs me so bad to. I'm forever talking to myself telling my self that I mess up again .I wish people could understand .I myself don't understand and I hate it.

To the lady about her husband (January 17th 2015; 4:31 pm)...I sustained an ABI about 5 yrs ago along with both my children.  We have gone through quite a journey just as you and your family are.  We were told that my son would never pass a 6th grade level and he has blown all the doctors away with his continued development that should NOT be possible..currently he is 15 and is totally in love with QUANTUM PHYSICS of all things! Total miracles...but certainly not without MANY challenges.
I applaud you for your incredible faithfulness to your family!  Stay the course...many of these things will subside with time but of course you cannot ignore them while they are present.  I have found that most ABI/TBI issues the patient suffers through have an element of truth in them and the injury is blowing it out of proportion.  I don't mean that you would actually leave husband, I mean that he has a genuine belief that's at the core of his issue, but it could be incredibly small in reality or more likely, that the belief is NOT ABOUT YOU, but more about him...he can't understand how you could possibly want to stay with him.  Many people think that they're value to their family has to do with their ACTIONS...the things they provide for the family.  Therefore, when injured like your husband is he may not be able to understand how you could possible have ANY true feelings for him other than pity (and men especially despise pity).  By your comments it seems obvious that his true value to you has NEVER been what he can do for the family (those are just needed perks) but rather just simply HIM!  We don't usually talk about it this way, but for many the highest value their significant other holds for them is "to be KNOWN" by that person.  Actions can be replaced in other ways...things he used to do, but for you NO ONE can replace being known by him.  If you agree that this is how you feel (or something similar) then getting him to understand that his value has ALWAYS been this to you, then it might help him with those feelings.  I have struggled through these feelings myself and have felt like an empty shell of a person without real value.  But realizing what I just mentioned was huge; understanding that my presence holds emotional, mental, spiritual ties in place for my family and that there is no greater value than that!
All that being said, if he isn't already, at some point he will probably deal with the very idea of being known himself, because for him this has all changed now.  Having walked through this so far, I believe that our core personalities may not necessarily change, but the bridges we have used to express ourselves have been destroyed.  It takes a newborn many years to develop ways to communicate but we expect that...after something like ABI it takes years to find alternate ways to communicate ourselves again, but we don't realize that so added to that journey tends to be fear, anxiety, anger, depression because we don't understand what's going on and if we will get where we need to be to ever feel normal again.  But it's just a new normal...he gets to explore and find new ways to express himself.  It's hard, but it's worth it! The brain is incredible...its greatest strength can also its greatest weakness...belief!  Right now it sounds like you have an incredible amount of belief...keep pouring it on him!!!

Thank you for this article cause my biggest problem is doing everything for my daughter who has a TBI

i had a brain tumor when i was 5 years old

balance, concentration and memory used to be the only problems i had... untill the last year or two

speach, and words coming out, i have myoclonic minifits caused by tremours, and my hearing is damaged from the radio therapy...

i'm trying to not give up on things and am getting help from my mum with filling a housing form out...

to all the survivers out there i wanna say a big GO YOU!! :)

I think this article should be spoon fed to the general population. I have a best friend who is learning to walk and talk again. And he has made leaps and bounds. I just find myself wanting to remind him how athletic and awesome he is. And I've noticed he gets a little thrill when I remind him of how he does things. Like washing his hands and using his hair to dry them on. Or the way he cooks and the way he hides things. He's so strong and his family is great. I don't want him to get in the dumps. I want to keep him pumped up. This article really confirmed what I was thinking. And the person who commented about people needing more empathy couldn't be more correct. Thanks for this article. I'm going to spread it around.

Ive had 2 brain tumours removed, 1st at three & 2nd at eleven, l cant even get out of bed some days, l now walk with a crutch

Omg. People tell me all of these all the time. I just wish people could understand. If things don't make sense to them, that's because they don't to me either half the time. Seriously, this world needs more empathy.

I know a few people who need to read this and realise how I am affected by my condition.

You know what you're doing don't blame everything on your brain injury when they don't know how it takes affect on your mood, speech, movements and character.

Having suffered an ABI early last year I can really relate to some of these things - particularly everyone saying "you seem fine" when you feel like you are struggling! 

In response to the lady who wrote a comment on 17th, 2015 at 4:31pm about her husband who is recovering from an ABI, I'm not an expert but I wanted to reply with my thoughts and hopefully help in some little way. Both you and your husband sound like incredible people. Him for battling against all odds to make such an amazing and quick recovery. And you for being there supporting him throughout. My advice (as I say I am no expert so take what advice you want and ignore the rest!! And all I know of your husband's ABI is what you have said in your comment so I may get things totally wrong)...my advice to you would be to read as much as you can about brain injury. You are probably doing this anyway as you have found this website but get to the library and find books on brain injury and look at the Headway website which has some good leaflets to download. This will help in your understanding of what your husband might be going through. Everyone experiences a brain injury differently but maybe he doesn't yet have full insight? He is possibly still realising/coming to terms with his situation? And low self esteem, anxiety, depression and suicidal thoughts are all common effects of an ABI. It's still very early days for him and he probably has a long recovery journey ahead of him. Try not to be too upset by his words and not take too much of it on yourself. He's in a safe place right now and hopefully as time goes by he will start to gain a better understanding and insight and see that you really are there for him. Keep telling him how strong and determined he is and celebrate all his achievements no matter how small and hopefully he will begin to take it on and feel a greater sense of self worth. 

Would he be able to access a counsellor? Maybe through the hospital or Headway? Then he can talk about his worries to a professional who can help him explore his thoughts. And any information about the ABI that he could take in could be useful too...like those Headway leaflets...before I saw those I didn't understand what on earth was happening to me and why I felt certain things. It was like a light switch was turned on when I read them, 

And maybe you could look at some counselling for you to help off load your worries and all the emotions you have had to deal with? I imagine Carers UK have a helpline...maybe you could start there??  And can a friend watch the kids now and then so you can have some "me" time? A nice bath or just an early night? Look after yourself and you will be able to look after your husband best.

And what do you do when you go to see him? Could you do some simple crafts together? Listen to some nice music? Read stories/the news? Skype a friend? Can he mobilise/be taken on a wheelchair outside for a wander around the hospital grounds? Maybe doing something nice together would take his mind off things and you could enjoy having a laugh together. 

Just ideas...but I hope they might help. I still have a long way to go on my recovery but for all the things I have lost I have gained an even stronger relationship with my partner and a real appreciation for life and the beautiful things and people in life. Good luck on your and your husband's journey. The world is on your side xxx 

This is so true. I suffer from a acquired brain injury as a result of an accident and it's so hard to explain the feelings I have.. Arguing with someone is especially hard to deal with as u don't know If what they are saying is the truth or if they are using the memory loss against u and making up things.. I find it hard to trust anyone as I can't even trust myself.. This will help paint a less confusing picture when I'm trying to explain things!

I was run over by a car at the age of 11, the car was doing 60 - 80 km/h and as a result of the accident i got a sever brain injury and the most annoying thing about people that don't understand the feeling of having a brain injury is that they think your incapable of doing things for yourself because you have a injury. And when you get called a retard and mocked because you stutter words constantly but you can't help it because its now a part of you. Or when you have a shorter temper than most people and snap or when you have problems that are affecting your family so much that they can't take being around you and separate because you are too much of a burden to them.........

Having a brain injury is the worst thing in the world, it ruins your life.

Thankyou for sharing your comments, if any one could help me, I'd be so grateful... My husband had a very serious car accident in August 2014 and is still in hospital. He was scored a 5 on the GCS scale upon admission, and shortly afterwards a 3- we were told there was no hope and we were as a family devastated and prepared to say goodbye to my best friend and partner of 19 years. I told the doctors if he remained in VS I'd still love and support my husband, and I 100% meant that. However just 5 months later, he has been an inspiration and fought so hard to overcome everything he was up against. He is fully awake from coma state, he had his traceostomy removed (something we were told would never happen) in October, he's eating and speaking and beginning to overcome his physical difficulties with strong rehab care and his determination. What I worry about and would like some advice regarding this is, his emotional state,he's convinced il leave him for someone else "able bodied" his words not mine. I always reassure him that I won't leave him and I love the new man he is as much ,if not more than before, to see such strength to overcome such obstacles and prove experts wrong has blown me away, and made me so proud to be his wife and to embrace our second chance after coming so close to death, but he won't believe me. It has become almost an obsessive thought (discussing for around 6-7 hours a day- I'm at the hospital for around 8 hours a day) and is followed by suicidal threats should this happen and I'm terrified I won't be able to convince him I mean every word. I've received advice from neurophychiatrists how I should handle this (distract or reassure) but how, as someone effected by Severe TBI would you handle this please? I desperately love him, we have three young children who have adapted brilliantly and treat daddy just like daddy. We just want him to realise he is so special and we feel nothing but admiration and love for him.

Mental retarded because they stutter their words out and keep repeating the same words until they can get it out

God Bless you all who have posted on here. No one can understand your struggles day to day except you.  May you find peace in rebuilding your lives and support where/when you need it. This country absolutely fails people with lack of support systems. 

August 19,2009 I was rear-ended by a woman texting and driving at highway speeds and I was at a dead stop. The impact sent the rear drivers side tire into mt back and caused the shock to explode sending parts into my head. By the time the reached me my heart had stopped and I was not breathing. I was fortunate to be resuscitated but I lost 7 weeks of memory and those memory issues occur absolutely every day. I am constantly retracing my steps or re-reading the same paragraph over and over until it sinks in. I used to be an avid reader and I think I miss that part the most. Some days I feel like throwing in the towel but I refuse to let this ruin me!

Hello I had been diagnosed and cured in 2007 of a brain tumor, the biopsy had said it was in my head since 2003. I was cured in 4 and a half cycles of Chemo-Therapy and I had done so, through my positive attitude, while going through Chemo-Therapy I would hear nurses fighting to get me as the patient they would tend to on their rounds. After Chemo, I was home schooled when I got back, and too many people said to me "You're lucky to be alive" and I realized as a survivor, how belittling that sounded and felt to me. Because I wasn't lucky I have a WILL within me to live and a STRIVE for LIFE! God Bless ANYONE who must go through these horrid conditions of Chemo/Radiation Therapy. 

Hi my name is dave. I sas assaulted seven years ago. And it has completely wrecked my life. I have spent so much time in mental health care due to taking overdoses and alcohol abuse. My family say I am lazy and useless and have never given me any support. I now live alone and very often wonder if it is worth going on. I fall in love with every woman who is understanding and kind to me. But I am 52 and most of the time they are to young for me and I have to keep away as they dont realise what I am feeling.and I get very depressed. These women are all in health care as I dont have any freinds does anyone else suffer from the same problems thankyou dave...

Yes, I have anoxic brain injury myself from a accident and I'm having trouble finding support groups.

Background: I was a timber feller for a logging company and in 1999 i was hit by a widow maker. I wasn't even actually working at that exact moment; just happened to be standing under a tree which a brisk wind shook a dead limb out of which struck my hard hat. Out of these 9 things i get told all but number 7 & 8 frequently. Mostly from my wife. The one that really pisses me off the most is the "you're lazy" comments! I'm not lazy and I'm actually a hard worker. It's just hard to stay focused and keep interest in what I'm doing. If I were lazy I wouldn't have returned back to the same job, which by the way is the hardest job I ever had in my life, just 2 month after spending 2 weeks in the hospital, and do it for another 2 years until I screwed my back up and could no longer do it. I am even guilty of one of the things. I tell myself often that I am lucky to be alive, but then I immediately go to the other end of the spectrum and start thinking "no, maybe you would've been better off if it would've killed you then your loved ones wouldn't have to go through the after effects". And that is weird because the after thought always comes in that way...not i maybe would've been better off, rather "you would've", and "then your loved ones", so that tells me that something off because of the way my brain goes from as if I'm saying it to myself to immediately as if I'm saying it to someone else.

I have severe TBI from a horrific car accident now I am being told I was a Aweful Mother and the sad part is I have no memory of it at all I have 3 grand babies that I can't be around because of it

I live with post tbi now due to a horse accident, the horse fell over on top of me and slammed me head first to the ground. Life isn't as easy as many may think on outside looking because they do not know what we who live with this do feel, and for myself most days can feel like being stuck in your own body watching the world knowing what you want to say or do and know how it needs to be said or done but still can't get it right that is a life of hell some days. This is a great article for many to read and I myself have educated myself so I know what I, dealing with and try to show others so they know and can handle dealing with me but sometimes not even that helps because people choose not to deal with the changes that come with post tbi so I do deal with many people in my world who do not care to adapt to life after so I now raise three kids on my own for most part and as if I never had this happen and that isn't easy but for these babies I keep going and keep trying to live life as normal as possible 

This is truely an invisible disabiity....the victums struggle everyday with usually no signs of what they are struggling with.

Unless you have a traumatic brain injury you'll never understand what it's like to lose everything that you into and you are never the same again, you are FOREVER CHANGE...but I'm glad it happened to me instead of my two sisters. But most of the time they don't understand!! 

I had been diagnosed and cured in 2007 of a Brain Tumor. With that all of these side effects which were spoken of, above, have surely befallen me. I applaud whoever wrote this article and how accurate it truly is to how WE the survivors of Traumatic Brain Injuries (TBI's) feel. Especially with how in the final piece that you discuss. How we all HATE when anyone says to us, "You're lucky to be ALIVE!" because we aren't "lucky" at all, we were STRONG individuals who loved life too much to just want to give up, as many can if they feel too weak. Not only that but it makes us feel Shame when people compare our victory in the war against cancer to just simple luck.

 I honestly have no idea how my wife has put up with me over these last three years.  It was a nasty epileptic seizure that threw me down onto the pavement, and the convulsions repeatedly smashed my head and face into the ground until my head was just so much pulp (and while that trauma was the worst--they talked to my wife about "end care" in the E.R.--I had three similar head injuries also resulting from grand mals). And a recent bout with sepsis didn't help with emotional grounding, which is perhaps the big, bad problem my wife has been facing every day since; my inability to handle frustration, this constant and voracious anxiety, this unfamiliarity with a world I used to navigate fairly well.  Perhaps the hardest part for her is my ridiculously reclusive behavior; because of me, all of our friends disappeared, I'm at a great arm's length from her own family members and I find myself turning to alcohol to numb the horrid fear that is loose inside.  For those who have stuck with someone with a TBI, my heart is with you.  I cannot imagine the hell I've put my wife through.  Never in my (old) life would I have even imagined such behavior.  Oh, I hardly mean that "back in the day" I was some saint; honestly, I cannot remember what I used to be like, and that huge absence just constantly terrifies me.  I just in some way, little by little, I can try to begin to make things somehow better for her...

my boyfriend was in a car accident 6 months ago. He now suffers from memory loss. he remembers nothing  from his past and forgets what he does and says. I stay positive for him and hear him out. But inside I'm hurting I'm scared that something going to happen again. 

That woman that said f you when people told her she was too negative, what I do is look them right in the face and say in my deepest meanest voice....YOU DON'T TELL ME....still saying that almost 13 years into TBI. Try that one sometime

I had a bad car crash 2 years ago. In fact, with in 5 months, I lost my husband, my mother, then I had the crash. I swear to Gawd, if one more person says Im too negative, or gosh, your such a strong girl, Im going to bash their face in. Since the first death, I am totally alone. no family, and no friends. The few friends I had, did come to the hospital after they saw the news, are no longer my friends. I guess they weren't friends after all. They think I'm too negative or I  complain.  One person said, I bring them down. I just said.....F YOU.

Will share nine things not to say with my TBI support group .About 12 of us meet once a month.Fellow survivors injured much more than myself have saved me.IV lost friends and family from my TBI. In turn a new set of friends has presented it self to me.I'm a bus rider now.First time in 30 years.The bus is full of people working through disabilities.A lot of experiance and wisdom on a city bus. Terrifying at first now I get comfort and social time on the bus.

My girlfriend says 7 of the 9 things to me almost every day. I am so fed up with this bullshit I want to leave her. But I don't want to give up. Any advice on how to deal with this would be appreciated.

So Sorry for what all the people with TBI are going trough. I understand 100%. March of 08 I was assaulted by a convicted murder while working as a correction officer in a prison.I had lots of broken bones and 4 surgery's to fix knee and wrist issues. I was having awful headaches and not remembering even the smallest things. It took 10 months after the assault for a doctor to figure out I had TBI. I struggle everyday with putting my thoughts in order and with remembering to do things and go places. I can be on my way to some place and while going forget what it is I am doing or where I am going. I have had 3 great friends stick by my side all the way and I know it has to be hard on them too. I am not always easy to get along with. I lash out and lose my temper at the drop of a hat at times and I have been told I can say some pretty mean things. I don't I don't like being that way and I wish I had more control of myself. I know I am blessed to have them in my life still but a lot of the time I feel like I would have been better off if he would have just finished what he started. It's hell living this way.

May 17 2008, fell 11 feet off roof area , broke my fall with my forehead on a concrete brick wall. Fractured C5, not diagnosed till few years later, head off centered on atlas /axis not diagnosed till later. Lost my career as a nurse. Family as in siblings, only 1 helped out of 6 siblings.  I have frontal lobe, parietal , occiptal and other lobe issues.  They distance themselves from me cause they say... I am crazy.   They expect me to do more as to what they expect but don't even know my limitations as with executive functioning, visual perceptions, language cognitive impariements, personality change, i dont' even taste salt anymore,  etc.  They think I don't try hard?  I say, i fell 11 feet broke my fall with my forehead, adn you think i am the same?  I know I am not.  Thank heavens for sites like this, at least hopefully when I send it maybe they will stop being so ignorant and read something.  A TBI can happen in a second.  Life can change in a second. 

I had a major stroke 14 years ago and an ischemic stroke 8 months ago. I made so much progress and now it feels like I'm back at the starting line. To all the care-givers who are suffering because of a loved one's TBI, I just want to say that your hurts are real, too. You're allowed to be angry and frustrated and you are allowed to walk away if that relationship is breaking you. Just please, before you do, find some support. Find someone to talk to who can understand how painful your own journey is. I know I lean hard on my loved ones, and I know I wear them out, but not everyone with a TBI is capable of that insight. Nothing about this is straight-forward, and I admire the courage of spirit it takes to try, 

I am so very glad I found this and I will be sharing it. I have a loved one who means the world to me. We met about two years after he was injured, and he was always very upfront about everything, but I don't think I fully grasped the continual effect on his everyday life until recently. I have been around brain injuries before and knew the main things, but I want know how to support him and what I can do to be there for him into the future. I often will say, "I already told you about that" or "stop mumbling, I can't understand you" and this makes that clear to me now. Thank you so very much for posting this article.

Almost 3 yrs ago July 8th 2011 I was in a motorcycle wreck , I was flown to Oaklawn IL. where I laid in a coma for 2 months and now have some major brain injury in the front left lobe. In the last 3 yrs Ive lost most my Friends / family and have repeatedly been denied disability. This page descibes my life to a T. I wish everyone could and would read this pg so I might get some understanding. I need help and I know it , know it is worse than needing it.:(

I am three years out from a huge stroke and I get people asking me why I need to rest all the time and that I should try harder and exercise more. I'm doing the best that I can!!!

I had my brain injury 14 years ago & can't do thing's the same way or speed as other people. I NEVER GIVE UP, so many people expected & 2 wanted me to give up. But i never did & it will always be hard as few people understand.

Confabulation. Thank you. I'm a boyfriend to a TBI survivor. Confabulation is a major factor. Thank you again.

oh my gosh this website makes me feel so much better I realize just how lucky I am to only suffer as much as I do thank you all for your contributions its been enlightening

I would like to mention the 10th, the very worst is "Do you remember when?"

When ever my wife talks to family members, they always say that. She will lie, and just go with it, but soon she will ask me to go home. Please, let everyone know that this is the worst a person can go through. My wife didn't even know me when she came out of her coma. The doctor's said she would never be able to come home. I fought tooth and nail to get her home, I did. It was not easy, but what can I say. Yes, the intimacy has gone, but maybe with some work it may come back, I hope. She is so beautiful to me.

I have one question WHERE IS THE AFTER CARE my adult son suffered a TBI 7 years ago and after spending a year in hospital and rehab facility he was sent home and for the last 6 years I have been his primary caregiver but don't tell him because he thinks he is the same, "well he knows he has a little problem with memory but that's all".....  Believe me he's different you don't take out most of someone's right frontal lobe and part of their left and and not get a changed person.  I deal with anger for no reason, forgetting what he has just doing sometime I can tell him the same thing 3 or 4 times a day and he will forget sometimes just minutes later.  He would not take a bath or shave or do any of the things to take care of himself if I was not here but again don't tell him that because he believes he would do just fine  haha, I could go on all day about what makes him not the same man he was before but the one that worries me the most is his confabulation if you don't know what it is google it) he tells stories all day long some of them quit fantastic but none of them true and I don't mean he tells one or two a day I mean he talks none stop all day long and at least 75 percent is not based in reality, if he thinks it it becomes the truth and people think it's funny but believe me it' not he has stop the police on 2 different occasions and told them that some one has committed a crime even named the person and the crime never took place.  I have tried to get his neurologist to send him to a neuropsychologist but he just says oh he's doing great just "look" at him ( I know the Dr does not think it is really none stop all day long but it is, I know where the saying "if his lip's are moving he's lying" comes).  Back to my original question where is the after care that teaches us how to respond, when to respond and when to just ignore a behavior.  I know what to do when he has a seizure but what effects does it have on someone when they live a complete fantasy world, I don't know maybe nothing but my point is I DON'T KNOW.  and now that I have that out of my system I can get back to my day............ ps to everyone out there caring for someone with a TBI bless you, a lot of them don't thank you they don't even believe you do anything all that great they can't they truly can't, those who can do, but some can't see it especially those with a fontal lobe injury.  If they had a broken back they would thank you profusely but they have broken awareness.  I know it has been easier for me because my relationship with my son did not change all that much, I was his mom before and I am still his mom but for a spouse a life partner going from partner to caregiver is another conundrum.  Bless all that have TBI's and all who cares for some who does.

I'm really sorry that you're going through this - can you talk to anyone to offload - you feel like you're moaning but you do feel better afterwards and better able to cope x My husband has a brain tumour - I've been looking after him for years - some v bad times and others pretty normal , what helps me is humour - last night i got a bit pissed with him - he reacted, and I said What do you think I am the Arch Angel Gabriel ? Yes he said - we giggled This am - I've got my glasses Me - that's great , we're you looking for them? Him - I don't know ! What else can you do but laugh together xx

Those with TBI's are thankful for help from family members & friends. If the ones who are close to the patient feel overwhelmed or over worked the patient is not using you he or she is incapable of doing the task. Your acts of kindness may not be able to be recalled by the patient. The TBI victim knows that you have helped them but is incapable of recalling in detail what has been done or when. This lack of recollection is very aggravating for the patient because they know at one time they were able to complete the task, how to do it, & which steps to do it in. Picking up from where they have left off on a task can be very difficult whether it's 2 hrs later or 2 days later. Planning note taking & recording completed tasks is highly important. Lack of sleep can drastically effect memory, attitude, aggression, anxiety, depression & or train of thought. TBI patients require a minimum of 10-12hrs of sleep per night. & possibly a 1-1.5 hr nap during the day. Your brain is a muscle, with a TBI it is having to work twice as hard to do ordinary tasks for those not suffering an injury such as this. Imagine doing squats at the gym with high intensity, the next day it feels impossible to walk & the following day is extraordinarily more difficult. That's from less then 1 hr if working out on one particular muscle group, whereas the brain being a muscle controlling all of your muscles, thoughts, taste, sight, smell, hearing, feeling at once. This can be overwhelming, exhaustive & irritating for the patient. Getting up to fail multiple times a day for TBI patients can become hopeless. As a normal functioning human being you have it pretty easy in comparison to a TBI patient. Be thankful for your capabilities to complete everyday tasks or even to be capable to walk, talk, or recall.

I understand those who are with someone who has a TBI and the frustration that goes with it. I am personally running out of compassion, care and concern. I guess you could say I am burned out. I try to help in every way I can. When he has the children I do EVERYTHING. It feels like it is expected and when I want to talk about things all I get is a defensive, angry person - denying, lying, saying whatever so he doesn't have to see what I do. All I read is what we are suppose to do for them. How we are suppose to act towards them. How we are suppose to understand they can't feel this or that. Do the tbi people know how hard it is for us? Or do they even care? It is heartbreaking that anyone has to experience a tbi - but for those of us who love them and try our hardest to make their life a better one ..... It's harder than anyone can imagine. It's thankless. 

On April 2 2002 I flew out of a car window after the rear passanger tire exploded the car went into the grass median which had a dip and the car went airborne the driver ended up in the trunk and I went flying out the window and flew 35 feet and needed my right ear really attached again after the shoulder harness almost removed it April 2 till may 25th I was in York hospital. Coma for 10 days and I just recently really lived the whole thing in a nightmare. My life sucks now, but at least people love me for who I am. Nate Watts

I have a TBI from a car crash 7 years ago. Emotional problems dealing with the memories of everything that has happened to me has been my number one issue. I am shaking as I write this as I very rarely open up and let people know of what I've gone through. The car crash happened when I was in high school and during a year in college, I let someone know that I have a brain injury. It backfired as this person called me retarded. A college educated person was ignorant enough not to recognize how far I had come from the TBI to succeed through college and this person didn't understand the harsh and overused word of "retard". Has something similar ever happened to someone else?

People with TBI need understanding especially in school. Most of us have lost enough, much less our careers . If we are lucky enough to go to school we need to try 10x harder and still underachieve, we need assistance for free. Most if all we need true compassion and patients, as well as thinking outside the box if being very understanding. If you have not berm there please don't pass judgement, I hear you " I could koals if I had twice the time. I have to re-learn addition everyday. You try it. Love this post it does give me hope I'm almost done rs

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