9 Things NOT to Say to Someone with a Brain Injury

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Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

Maureen replied on

HI,

I was engaged to a young man( he was 34 and i was 28) in the early 1980's who suffered permanent brain damage as result of a bad auto accident. Although he resided here his parents who were quite on in years took him back to Florida to live with them and his fraternal twin. They are all deceased. I lost contact with him as his family thought I should go with my life but I found him recently . He is in a retirement home and I spoke to him briefly. I want to go visit him but do not know if that would be worst for him. The staff said they knew of me as said he spoke of me all time and knew my name. He was a wonderful, intelligent, loving man and his accident altered his life , mine and that of so many others. I am sending cards, letters, almost daily as he no longer has any family, never gets mail or visitors ., He does have a guardian. What can i do for him? It must be awful. I want to be a friend of sorts as everyone needs to know they are cared about, remembered on their birthday! make him smile, laugh, be happy. I always hold a special place in my heart for. him. He referred to me as woman of his dreams. I regret we were not married as I know there are frustrating days but I loved him so much and visited him daily in hospital and rehabs for 2 years! Then they chose to move him back to their home down South ( I understood that). What can I do for him? Should I take a trip down to visit? I know what we had can never be as he is the same yet different. I just want to be his friend, let him know he is cared about., never forgotten. Thanks!

Rose replied on

I am so sorry that he was moved away, even if it made sense for the family. It sounds like he loves you so much and you him. I don't know the extent of his condition, and these visits can end up being difficult emotionally, not just because the sorrow of what was lost, but because of his confusion. That said, I think you should still go if you think you can handle it. After that initial visit you will be able to know how live interactions with him will be. TBI can be the most lonely thing in the world. Sending letters, little gifts like his favorite snacks or books, if he is able. . . maybe virtual games such as Words With Friends. Anything you feel good doing, that lets him know that he is remembered and connected in this world, is an amazing gift and will help him greatly. You are an amazing women for staying connected with him. I know it can be so much easier to turn away. Sending you love and strength.

Virginia replied on

I have a brain injury, go see him. Stop being so afraid. You can change his life.

Steve replied on

You are an angel. Stay in contact and keep being his friend, no matter what. After a lifetime with TBI, lonely is my worst condition! I am surrounded by my large family, yet no one in my circle really understands what it’s like to be PTBI! If you can, make the trip! May God bless you for your loyalty .

Denny replied on

Susie,
Your husband is very lucky to have you. Sure your faith in God is the backbone of who you are. I have TBI as well. Told possible CTE. Stage three. My wife too is a Christain. She is a blessing.  I can not relate to what your husband is going thru.  I have had multiple concussions due to sports. It has taken its time to catch up, but it has. This I do know. My wife's mother lives with us. She is 93.  Her husband also lived with us but passed three years ago or so. Alzheimer's. Wife's mother has dementia.  Pardon my spelling. My spelling used to be really, really good. Now; not so much. Mom still asks where her husband is. We keep her husband's obituary on the table by where she sits.  We tell her and give it to her to read. Don't know any other way to do it. I hope your husband gets better. There is not much worse than remembering what you used to be able to do, and now, not. There are support groups for caregivers. In CT they have them through the Brain Injury Assoc.  It is good to talk to those going what you are. I think for you, it's an opportunity to share your faith.  Someone out there may need you besides your husband, God bless you.

Ed replied on

13 years ago today at 16:32 hrs (New Year's Eve), I died for "38 minutes to an hour" according to CARE Ambulance. My head hit the ground so hard, the lights just went out. I was moving a dirtbike in between shots in back of my studio when I got hit by a truck...no helmet since I was just moving it over to the dirt and I grew up racing motorcycles.

I've always been blessed with the ability to use both hemispheres (I'm an engineer/inventor and photographer), and my recovery has been truly remarkable. However, it's BECAUSE I appear fully functional again that my close friends/family lose patience with my short-term memory...I'm told that I repeat myself constantly.

I've sent them this page's link...so, thank you.

Kristina replied on

My guy just got a TBI. Nurse said he hit his head and it appears multiple times causing his entire brain to bruise. He gets the hummingbird out today and maybe tubes out tomorrow. Tomorrow be 2 weeks since the initial accident anyhow he was trying to sit up but couldn't cus his hands were strapped to side rails and he was crossing his leg. They say he will never care for his self but I seen that and I'm more hopeful. He does not know me or his dad how long does that go on for? His memory will be hard to get cus for 6yrs he would remind me of stuff we have done. Dr.s I have seen, places we have went. I don't have TBI but he has always had enough memory for us both. How much does TBI people change. He was amazing, patient, kind and loved me like no one ever has. He has told me for 6 yes I'm the one he meant to marry and I'm beautiful no matter if I looked like hell. I'm just worried I will be pushed away by him and his dad He brang me 1300 miles from home to NM. I'm still only here cus his dad said he brang you here and wants you here. How much is gonna change?

Nadine replied on

Hi Ed, that was an amazing story! It really goes along with what I believe. I formed my ideas from reading books such as Richard Bach's "The Bridge Across Forever" and "One" and reading "The Education of Oversoul 7" trilogy by Jane Roberts. It resonates perfectly with these, especially the Richard Bach.

I was very disappointed the golf lady derailed the subject and continued to do so even after the host mentioned the subject had turned off topic.

However, I am glad that you mentioned the book by Dr. Eben Alexander and will order it soon. Have you written a book? I would love to hear more.

Andrew replied on

Hi. I've been married 11 years. My wife has had a series of brain injuries ongoing. I was working and became disabled. We communicate like D-Day sometimes. Its like the art of connection to someone with TBI is unique and method is not interchangable. With insufficient tools, a plier being the last tool- it strips a hexnut... and that is not the end. You can go for the hexnut, stop, cry, ache... there is no hexnut! But aggressivity and defenses build around what seems insurmountable to accept! One day is here- today.

I am willing to face the fire of the desparation but not today. Now I get Xmas cookies. I can use conversation and encouragement. I'm still getting my @$$ kicked by life trials.

Anonymous replied on

I have a bf and he had a brain damage. He is always negative, blaming or accusing me all the time even I am not doing something. Like he got very jealous over nothing esp we are in a long distance relationship. He always think that I am talking to someone else even I am not. Sometimes he act like a child or immature. It is very hard to deal with him.

Bob Taylor replied on

Belittling. Yes. I don't have a living relative who hasn't treated me as though I were a case of 'bad character' instead of pediatric TBI. And I know perfectly well that none of these useless people could have begun to stand up to what I've stood up to.

Andrew replied on

I noticed you commented recently. Thank you for that. My wife has TBI and I watched, aghast, as they most all would give her a bad time in front of me. Yelling and arguing. Then her parents each passed away. We both would argue over no big matters and that has lessened with acceptance of what cannot be SEEN... which is faith & love. I wish she said what you did about feelings. She cannot. You help me so ... Thank you

Brittany replied on

Just be happy you’re alive..

Aaron replied on

It explicitly says in the article not to say this.

Jennifer replied on

Is there anyone really here, experiencing what it's like to be the mother of a 45 year old who sustained a TBI at age 15? I can't take another day! His behavior is so oppositional.

GayLynn Smith replied on

My 54 year-old son was 16 at the time of his accident, comatose for three months, shunt in brain, seizures, inappropriate behavior, anger outbursts; but the most loveable, sympathetic, empathetic human being with a wit and joy that puts me on the floor laughing.

Seizure medications can cause agression and anger, especially Keppra and Valproic Acid (Depakote). There are better drugs. If your physician is not helping, find another; even if it takes 20 years. Medications have to be selected with physical and mental disabilities in mind. Head injuries can cause intermittant brain swelling called encephalophy. Study the medications your son is on: all have side effects. Observe influences on your son’s behavior including posture, environment, food additives, diet, sleep patterns: they all give clues to help medical personnel.

AND get and keep ALL medical records, FOREVER..Hospitals and physicians do not have to keep them. State law will tell you how long. Keep results of tests, MRIs, etc.

There are many government funded services to help people like your son and your family. Begin with one: ask questions and seek help. You will open doors that I am just now discovering 38 years later...including this blog.

Suburbia_Dweller replied on

I wish I could fully identify with your pain and frustration. The things that no one else sees you go through are the ones hardest to handle. It has to be very difficult to have been a caregiver for so long. You hold so much hope for your childeren’s futures. I do understand the oppositional behavior. My husband sustained a significant brain injury in a tractor trailer accident last year. His behavior is so out of control when we go places that at times I just have to bring him home. He knows enough to know he doesn’t want to go to therapies or doctors visits but not enough to understand how injured he really is. He fights me at every turn and blames me for making him do things he doesn’t want to do. His short term memory is basically gone so after going though one of his temper tantrums he forgets why he has to go to therapy and we repeat the scenario again. So, no I don’t know how it feels to be in your shoes but you have my empathy and as much understanding as I can give you. God bless.

Liz replied on

Hang in there, I'm just going to pick my 38 yr old son up tomorrow with severe TBI from motorcycle wreck,I'm on overload.So many emotions & dealing with so many other things.One day at a time is all I can say at this point.

Sheila replied on

I feel your pain. My grandson has TBI. Happened in 2014. He also had multiple strokes in brain after the extensive surgeries. He is stable now. He has a thrach and a feeding tube. He doesn’t talk or able to move past the neck down. He will be 22 this January 9th. We love him so very much and we keep praying for him. He does smile a lot and seems to know what we say and he recognizes those close to him. We encourage him all the time and look forward to his beautiful smiles. So very thankful to GOD that he is still with us.

Susan replied on

Good Luck to you, make sure to take some time for you.

Aleks replied on

Guys, I need help, I don't know where or to who I should go for help. I got my first brain injury when I was 7 (I'm 18 now), I found out about it about 2 days ago. Basically, after my swimming lesson, I went into the showers with all the other kids and we decided to spray shampoo all over the place, being the little hyperactive kid that I am I put my feet on the wall and with all my might I push and slam with the middle of my head to the wall. I was unconscious for about 45 min - 1h and after was extremely dizzy and confused and didn't remember what happened for about 3 days. I didn't receive any medical attention, just my parents telling me to lay in bed and sleep it off. After the first one, I also had multiple falls off staircases in my school, hitting my head on walls, falling and also without knowing about the brain injury I thought it was all my fault and I'm just a bad person and what everyone says about me is right. I also have been drinking alcohol since I was about 16 (started after finishing 9th grade). Have a lot of paranoia, anxiety, depression, phobias, extreme social awkwardness, problems communicating with other people, problems maintaining any type of relationship, my vision is slightly blurry and I can see static everywhere I look, my ability to speak has also been getting worse, putting out words and telling a story is like a math test, I can't explain anything and usually when I start a story I end it in 1 minute because no one understands and I forget what I wanted to say next and I'm tired of living this life, I tried ending it all 3 days ago but a blackout from alcohol stopped me (I live in Tallinn, Estonia)

Anonymous replied on

Please please please consider immediate medical attention and a Neurologist should evaluate you at the least.

Brooke replied on

Aleks, stay strong! Get some psyc help first and foremost. The first thing is to feel good about yourself. Go to hospital and tell them what you did three days ago trying to take your life. They will help you get on some meds and help with counseling. I am a Tbi survivor, also from age 7. I am 37 now. I have had many of the same experiences as you during my lifetime. Realize that you can and will be successful in this world! You are worth fighting for! You are strong or you would not have made it this far! Think of things that make you happy! I revert to my childhood happy days when I feel down. Close your eyes and put yourself there for a little bit. You will begin to feel the same joy you felt then I bet. I wish I could help more.

Kevin replied on

Hello. My son has suffered two major brain bleeds due to moyamoya brought on from cancer treatments from age 4 through 15. He is now 27 and recovering from the last bleed in May. He is a great young man but is extremely board. He has no day to day short term memory so returning to school or receiving training for a job seems unlikely at this time. I'm note sure where to ask or go to try and help him return to some type of life. He cannot drive anymore and socially really only has one friend left who visits and takes him out maybe once a month. I looking for help to help him what can I do?

Julie replied on

Perhaps there is a group in the area that helps people with disabilities have a social life and /or maybe a church group or volunteer group may offer some respite care and socialization opportunities. I don't know where you reside, but you can look up places, there are advocacy groups and support through the DSPD, dept. of persons with disabilites and other groups for brain injury, etc. Though, not the same thing, I have a son with neurological challenges. He has static encephalopathy. His brain is not developing. He is 17 years old, and has the mentality of a toddler. He does not talk, does not write, nor read. He is highly energetic. There's a group in my area called Antanna's Vocational Services. They have socialization, residential, and vocational services for those with disabilitities. We have a support coordinator who works for Aspen Grove Advocacy in our area. My son and my other son (both also have autism, one is high functioning), go to there day programs. I hope you can find something in your area. a support coordinator/advocate can help you find what you need, regardless if they work for the government or are independent (which mine is)

Mehran Soha replied on

I am from Iran.I had a very severe TBI 1.5 years ago. I was in coma for 4 months then I opened my eyes but I do not remember at all. At first I used wheelchair. Then I walked some steps. I did some exercises but I feel exhausted. I keep doing these exercises but I am very tired and fatigue. Here there is not a good knowledge about TBI.

rebecca kent replied on

These are very interesting comments. My son sustained a brain injury 23 years ago in a road traffic accident. The problems he has are because of this (all the things mentioned in aforesaid comments ie apathy, depression, memory etc.) It's not only very hard on the person concerned, but like ripples on a lake affects everybody in the family. You need the patience of a saint and to constantly remember that the person concerned does not choose to behave this way.

Brent H replied on

I'm a 52-year-old male that has TBI. I'm a year and a half post. My question is this:

How do you cope with this?
I have a terrible memory, there is no joy in my life, and I can't seem to put a day together (like clean my boat). I have so many notes that I think I make things worse.

I broke my neck and back when my head was crushed all at the same time. I'm all put back together — fused at my t-1 through my t-5 on my back. I'm very active and am trying to still make a living for my family but having great difficulty. My income is a third of what I normally make. I know things are different for me but can't seem to figure it out and this is causing me more grief. Any suggestions? I don't even know if I'm asking what I'm trying to say or not but if anyone has any info I would be grateful.

Chet Simmons replied on

My son suffered a severe TBI back in June 2016. From the research I've been reading of late, aerobic exercise seems to play a big factor in neurogenisis and rebuilding connections. While it directly impacts motor areas of the brain, it also seems to help build connections between areas of the brain. Also, OMEGA 3's and DHA in fish oil also play a role, it seems.

Linda Keady replied on

Hello Brent. Firstly I am so sorry this has happened to you and while I know it won't be any help for you to know this, I am sincere.

My own husband had a TBI after a stroke over 10 years ago and I won't kid you, life is tough. There is no quick fix but there are things that you can do that hopefully will make you feel better about yourself. You talk about your memory. Brent, write everything down, what time you get up, what you have for breakfast, what you do after breakfast, etc. etc. Write everything down in a daily log. Refer back to this each day to remind you what has taken place. Make new memories and again log everything to help you make new pathways in your brain. Tell all your family and friends to help you with remembering things but not in a dominant way. Gentle reminders are good. Also, having a TBI, it is very important that you would get some professional help; maybe psychotherapy with an accredited person that would help you in some way, come to terms with what has happened in your life. I don't know myself Brent, but I had to get a psychotherapist for my husband and while it didn't make things better and it wasn't a magic fix, over time, it did help. We couldn't afford it so we asked family if they would chip in for the sessions and of course there are often psychotherapists/counselors who will give their time for free or at a greatly reduced rate. I don't know what part of the world you live in but here in England we have an organisation called 'Headway' and they are a very proactive place for people with TBI's to go. They really are amazing and help so much. Brent, I wish you all good things in life and hope and pray that you will get the help you need. I forgot to say that it must be very hard for you with your income, but listen when I say, you are amazing to be earning at all, after what you have been through. I so admire you. If ever you want to talk more, my e.mail address is choices8882000@yahoo.ie. Linda Keady

Carol replied on

I am 4 months post. Still have major memory problems. When I try to explain my difficulty to friends, they try to make light of it and say "Oh, I always forget stuff, too." I hate that. It diminishes my problem. It also feels like they are distancing themselves and makes me not want to confide in them anymore.

Victorya replied on

Carol, have you tried telling your friends how their comments affect you? They may be trying to normalize the memory problem for you by joining in with it and not realizing how devastating it really is for you not to remember things. Letting them know how you feel may help them to understand your distress and how they can respond more helpfully.

Leah replied on

I'm glad you brought this subject up about "oh I forget too" because I literally said something similar to my fiancée. I'm reading all of these comments to possibly learn how to respond when, in my case, I was being honest about forgetting. I didn't realize the frustration in comparison.

Be strong and I pray each day gets better for you!

Ally replied on

My ex husband checked off all of those then told me I wasn't normal enough... so now we are getting divorced. My tbi?...Epilepsy since I was little and low blood pressure makes for a lot of run ins with the hard ground.

Chris Rainey replied on

Add a tenth comment you should never say to a TBI survivor: "...Remember, (?) I told you..." I'm 6 years out from my major stroke and 3 years out from a 2nd, milder stroke. I have shared with friends & family how their innocent unthinking comment affects me and have offered alternative variations to them to get their 'point' across that sometime in the recent past I had been informed by them as to the subject being discussed.
Reminding me that my short term memory has been compromised does nothing for my self esteem, especially since, if given a little time or cues, I WILL recall!

KR replied on

I have a tbi and I constantly hear a variation of "You seem so normal," or "You sound like you're doing great communicating to me."
Jeez!!!!! Do you know how frustrating and infuriating that is?
It's like when they used to tell you crap like "You must have alot of girlfriends," or the infamous "You must be a heart breaker" when in reality you can't even make a friend due to the inabilities brought on by your TBI.

Bryan replied on

I am a father with a TBI, it's been 43 years now since my stroke at the age of 18.
In 2012, at the age of 17, my daughter was in an accident and suffered a TBI.
Can anyone relate?

vera bentley replied on

i can relate to that! i was 17 (in '83) & i was a passenger in a car accident. im 51 now :/

Kristin replied on

My mom has suffered a brain injury April 2015,
I'm still dealing with the after math of it. Although she's high functioning, there's a lot of things she'll never be able to do again.

Tim replied on

I am at 18 yrs since my abi and most of these problems are still present insomnia memory loss irratbile life goes on!! Tim

Dean replied on

My favorite, at work, by a guy who knew of my accident. "Don't be retarded about it." About materials used at work. I think he felt bad, cuz later came by to help me with something else, something he never does. I didn't mention the owie he caused. I didn't know how. Two years post accident. At least I'm working, pretty good at it too.

Piobair replied on

My current favorite is "That's not very mindful of you." As a Buddhist there's not much which I take personally, but that one cuts me to the quick.

Anonymous replied on

Just an FYI for caregivers-watch for loops-being caught in a cycle of repetition that leads nowhere. This is extremely frustrating and would be nice to have this pointed out, because most times we don't see it. I saw the above comment and had to add. I get stuck in a loop all the time. As a matter of fact that's exactly the word I use to describe it. My poor husband takes the brunt of it and I don't know how to stop it. I see 3 different doctors now. I'm over 3 years POST TBI and I am straining our relationship. How do you stop the loop??https://babyishcare.com/kids-bow-and-arrow/

Anonymous replied on

Thank you all so much.

I've had my tbi 5 years now.

People just won't get it.

Even those who are close to me.

“Why are you so hysterical” -my brother-

“Are you drunk?” - my dad at 10.00 a.m.-

It’s sad. It hurts.

Kami Victoria J... replied on

I love the way you write. Its very different. God bless you.

Anonymous replied on

I invite ALL who have passed judgment, not provided adequate medical or psychological care, accused previously high achieving, intelligent & competitive athletes of malingering, to live for ONE week with their economic means permanently removed, inadequate social & family supports, no restorative sleep, adverse effects of medication, loss of self identity, possibly homelessness...etc, etc.   and see how it is.  As a former medical provider, now a TBI patient most people would not even BELIEVE how we are treated.  My heart goes out to all of us, told we will be better if we accept everything and "move on."   Move on to what exactly?

Alexa R replied on

I 100% agree with you. I spent 14 years working on my brain because I love math and science, but after I took several blows to the head, I've been unable to recover. Not only was I forced to give up on everything I'd spent 14 years working for, but many people around me hounded me for months while I was attempting to get better, and deliberately put themselves in the way of my recovery while turning my brain injury it into a joke. Imo is this the number one reason why I'll never be able to recover as well as I should have, because I was completely unable to get any peace to do so.

Many people are quick to pass judgement although some of the fastest-growing health issues, physical and/or psychological, are related to the brain, imo including "victim shaming and slander". It's imo mind-boggling that people can be so judgemental when it's a problem that's likely to one day occur to themselves and/or to someone in their own family given that it's one of the fastest-growing health issues. Considering the fact that many brain-related problems still go completely undiagnosed, it's likely to already be occurring to themselves or someone in their own family.

It's imo a travesty how little a brain is valued, especially since it's claimed that we're in the knowledge-intensive age. After what I've personally experienced, I'm finding it difficult to agree.

Max replied on

I’m 9 years post tbi , 9 months since realizing my problems are tbi related , education needs to be more widespread. That being said the symptoms I’ve experienced last 9 years have been nothing more than a joke to my loved ones who knew that I thought my tbi might be to blame for my symptoms. This made my symptoms worse and murdered my self esteem because I just tried to laugh it off with them and thus completely destroyed my sense of self and any hope for recovery is now mine alone because they don’t care enough about my well being for it to have any bearing on their own well being.

Sincerely, I hope for humanity, but with my tbi it feels that I’m not apart of humanity or it’s hope anymore. There’s a reason we need each other us humans , even when we don’t know how to be our best. Being there for each other is the best thing we can do , it’s the right thing to do . Heartbroken with a broken mind can make empathy downright difficult for those with tbi but those lucky enough not to have tbi , try it. It’s the only thing I have hope for , just try it. Have empathy genuinely for the sake of tbi survivors not for the sake of yourselves whom we are counting on to imagine our frustration. Just a thought. Peace.

Somebody replied on

Well said, I read your post and thought finally!!

Thank you

Anonymous replied on

I would like to add #10 - any statement/advice/criticism that starts with, "You just need to...".  I have come to hate the word "just" and all that is wrapped up in it: simple, willpower, determination, self-discipline.  Nothing is a "just" for me anymore.  Nothing is simple.  Nothing I have difficulty with is the result of a lack of willpower, determination, or self-discipline.  However, it seems everyone is completely unaware of the hidden message of "just".  What is simple for him/her and used to be simple for me no longer is.

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