9 Things NOT to Say to Someone with a Brain Injury

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 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.

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 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.

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.

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

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

I have TBI. I say things to people I don't remember saying and I think I've said something to someone but didn't.  Does anyone else do this?

The comment today on Oct 13th, I also really like. I feel that all the time with people. Trying to compare there everyday issues with TBI person. It's demeaning.
It's a horrible feeling. FOR EXAMPLE:
I don't go to someone with, say, cancer, and say to them, "oh, you feel sick? Well  I feel sick all the time too". Makes me feel awful to even think to say that. I do not understand what a cancer patient is actually going through so instead I would say " WOW, that must be tough. Your a strong person dealing with all that, and I can never understand what it is actually like unless I am going through it also. I get nasuea as part of my TBI but it is very different than in your case."
This way they do not feel you are comparing your own issues with theres to make them feel like they do not have that big of a sickness. Love all these posts and comments. They are very helpful.

 

My boyfriend has a tbi and received it before we started dating.  He shared his injury with me right away.  I admit I had no idea what this really meant and just how his tbi affects his life.  I have read so much and gone to his doctors that now I fully understand there are things he does and says that he can't always control.   It isn't easy to remember he may be saying things without knowing how it sounds.  He can get angry very easy and focus on negativity a lot.  This site is giving me comfort that I am not alone. 

I had a very horrific brain injury. Around 17 years ago. I still have many problems. I cope pretty well. I have very bad sorry term memory problems. I really try to be very positive. Rather than dwell in sorrow Or discontent. I'm in control of my destiny if I want something I try to make it happen. I have ptsd and anger issues when confused or upset.

I was a infant when I fell and had a brain injury.

When I started school  my mother told me to never tell anyone or they will say I am stupid.it did not  matter,my siblings would pin me down and show everyone the scare on the back of my head ,then say she is stupid,her brains fell out.

When I went to middle school my mother say never to tell the teachers or they will take you out of school and on one is at home to take care of you.

By grad three teachers knew some thing was wrong ,they said a learning disability.

This was   1969. support for my b/i was not Cleary understood at the times.

Funny how the support staff would go out side to smoke dubies all day long but was frustrated be me not being able to understand the process of math rules.

I am 52 now. And have had only customer  service work most of my life.

Now I am dealing with age discrimination .

Cant even get considered for a job as a night stocker at walmart.

Ontario works treats me like I am not trying hard enough.

I have worked all my life ,now I ha even begin for welfare.

I should just kill myself and stop the humiliation.

I think a major one was missed from this list and perhaps should be added in as the 10th item for the top 10 things not to say instead of 9.  That is, "I didn't realize you were so sick."  Or, someone trying to come to my defense by saying, "Don't pay any attention to them, they just don't understand your illness or they just don't understand how sick you are."  I'm not sick.  I'm injured.  There's a vast difference between illness and injury; specifically TBI.  Please stop telling me I'm just sick as if I'll get over soon.

My friend with a TBI sent this to me, and for that I am grateful. I admit saying at times some of the forbiddens on this list, and see that it is counterproductive to communication to do so.

My question has to do with the irascibility leading to an implied accusation (or sometimes its even outright). Is it too much to expect an apology in relative short order, or is it just as likely that her memory of the gone south conversation won't coincide with mine enough to make it meaningful to me, or that she may forget it even occurred? This is an ongoing problem that I'm sure others have too.

On those rare occasions when I've told people what I live with after my accident, some have dismissively said, "Oh, I go through that too." That really ticks me off. I tell them, "I suggest you go out and get a brain trauma and when you come back, then we can compare notes." 

What really gets me is when someone asks if it still hurts!  (Mine was almost 30 years ago.)

I really found this to be very helpful, I think that I will do as others have suggested and post this on my Facebook page.  :)  That way, the "You look fine"s/"You seem fine to me"s will fade away, hopefully.  In any event, I believe you forgot one:  One of my biggest pet peeves, post-TBI is the whole, "I never said that/You said X/That conversation never happened (or didn't happen the way you remember)" thing.  I could do without hearing that forever.  It seems that my short-term memory, even these (almost) 29 years later, is not nearly as perfect as I would have it.  *sighs*  Another one that I hear all the time from my boyfriend is that, "Oh, so your life isn't worth living if you're not superior to everyone else, is that it?"  Simply because I *used* to have an eidetic memory, and now my memory is like a... metal things with holes in 'em... Sieve!  ;)  Seriously, I knew the word 'sieve' belonged there, but you get my point.  Searching for the right word is annoying when you used to know all the words in the dictionary, then you got bored and read the medical dictionary and Gray's Anatomy, too.  *sighs*

I have had my TBI since 1995 ( I turned 17 in a coma)   Im almost 36 now.....I wish I didn't live.  Nobody understands me ( what friends I have))!!!!      I had more friends then I knew what to do with?

It's not just what people say that's the biggest problem.  I would say my biggest problem with uninjured people is the looks and the assumption people have when either talking to me, walking by me, or in an area with me.  I'm 15 years post injury, and I've been able to come back almost fully with some deficiencies in my memory and/or speech but I appear injury free.  That's my biggest problem with uninjured people is that because I look relatively "normal" and I have problems remembering or getting more agitated, they think I'm doing this on purpose.  I'm not which is probably my biggest handicap now, frustration and channeling that frustration into something more productive and beneficial.  Finally, I would have to say if people want to understand head injuries more proficiently, get on an airplane, travel to a country they've never heard of, and try to fit in with the natives as if you've lived there your entire life.<span style="\\&quot;line-height:" 1.6em;\\"=""> 

I have a few people in my life who have suffered brain injuries, and this is a helpful reminder about things not to say.  I'd like things that WOULD be helpful to say, though.

I understand SO much - ALL of what has been written. It seems that no one has a clue about brain injury or the effects it has on individuals but those who have lived it! Especially, in the long term. As with all things, as mentioned many times, if others cannot see or experience it first hand it, they DO NOT BELIEVE IT! I have friends whom I will never spend time with again and I do not know how much longer I can stay married to my own husband!!!!!!! He was not around when my severe TBI occurred, refuses to educate himself on the facts, work WITH me on things that can help me with organization, etc, etc, etc, and blame me for everything and my "laziness" and "character".    God bless you all !

I have heard a few of those. I stopped talking to the public because nobody would give me time to finish my sentence. I got tired of the "you're from outer space" look. I isolated myself, now I find that I have anxiety attacks when I have to speak in professional situations. I want to go back to work, but I no longer have confidence I used to. I need a class or something to help me .

I AM A TBI SURVIVER 6/22/07   2 MONTHS IN ICU WITH INDUCED COMAS.  WENT TO REHAB 5 DAYS A WEEK FOR A YEAR.  LOST ALL PAST OR PRESENT MEMORIES.  I AM MUCH BETTER NOW, MAINLY BECAUSE I HAD GOOD CARE AND DOCTORS.  BUT MOST OF ALL I HAVE THERAPIST WHO IS ALSO A TBI SURVIVOR HERSELF.  I CANNOT TELL YOU HOW IMPORTANT IT IS TO HAVE A THERAPIST WHO IS ALSO A TBI SURVIVOR!  I AM A MUCH MORE POSITIVE THINKER NOW AFTER THE ACCIDENT.  I BELIEVE THAT OUT OF EVERYTHING BAD THAT HAPPENS SOMETHING GOOD COMES OUT OF IT , IF YOU ARE "PATIENT" AND ACCEPTING.  I NOW DO VOLUNTEER WORK IN THE REHAB FACILITY I GOT BETTER AT.  I WORK PRIMARILY IN THE TBI UNIT AND AM TOLD BY THE THERAPISTS AND DOCTORS HOW GOOD IT IS TO HAVE ME THERE.  BECAUSE IT IS GOOD FOR NEW PATIENTS TO KNOW THEY ARE NOT ALONE.  I AM SO GLAD MY THERAPIST TOLD ME ABOUT THIS WEBSITE!      GETTING BETTER EVERY DAY,  DAVID B. ST. LOUIS, MO.

#9 Let's me know that I'm not alone. I really want to strangle people when they tell me I'm "lucky to be alive."  Lucky was what I was 12 and a half months ago. Thank you for this.

I've had TBI since 9/96, I was in the hospital for 2 months - when I did get out I had to go to physical therapy for 1 year 40/hrs a week - to learn how to walk,talk,eat everything like I was a 1 year old, I got TBI from a car accident which I also lost my 8 year old daughter in. I didn't know that because I was in a coma for 5 weeks - when they told me her name I didn't remember who she was and it took me along time to remember anything. To this day I don't remember the accident because I was sleeping - my boyfriend was driving.  A man ran a stop sign and hit us and that is how it happened.  The man who hit us was drunk .23 and my boyfriend also had a .09 but it was his 4th one. So needless to say he doesn't have a license anymore. After I got out of hospital I started doing my therapy and in that time I became pregnant - but didn't know until I was 3 1/2 months because with having the BI it made all my female things stop. Anyway I ended up marrying my boyfriend when I was 5 months preg. because he never had a kid and I wanted to have another.  All was good for about the first 4 years after we married then it just started going down hill - of course it was my fault because I have BI - but we moved to a northern state for him to get his degree (he's from up north) I've always lived in FL. so didn't know anything about driving in snow and ALL that goes with living up north and remember he didn't have a license so I had to do all the driving also was raising a 4 year old. We lived up north for 4 years then I told him I was moving back w or w/o him and he came because he was having a problem getting a job w/o a license. So now we were back and he got a good job making good money but everyday when I would go take him to work and my son to school I would then go p/u son and a hour later have to go pick him up from work. He would come home eat the dinner I cooked then go to the spear bedroom where he played video games like 4 to 5 days a week. One night he went in there after dinner and I put our son to bed then I went to bed a little later but woke up at 5am to find him not in bed - I was like "OH no he fell asleep in the spare room." So I got up real quick to go get him and he was awake still playing video games. That was a Mon. and we had been fighting for like 2 to 3 years before so on Fri. while he was at work I moved and lived with friends until I could buy a house,I bought one 30 miles from his and our son hasn't and won't come stay w/me he stayed living at the other house because of school, friends and of course his dad is cool and plays video games like he does. Now I have a nice house/divorced from the one I fought with all the time and I'm living on disability and alimony.  Fun Fun!!!  My ex acts like he's all happy but I bet the place hasn't been clean since I moved and my son only sees me when I go take him to get something to eat or drink or clothes shopping or whatever he might need or want to do. I've moved out and am doing the best for myself but I miss my son!!!!! He wouldn't come stay with me when I lived 5 miles away because he said it felt weird staying over someone's house. "I'm his mom and I had a bedroom for him then and now at the house I bought I got him a bed, dresser, cable tv in there and he still doesn't want to come stay with me.  I told him if he would come up like once a month that would be great and he won't do that.  But of course my Ex makes a deal about it because I never have him spend the night.  How are u supposed to make a 16 year old come stay if he doesn't want to?? But by the divorce parenting plan he is supposed too but won't. So that is how it is for me now. Yuk!!!!!