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 (600)

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.

about a year ago my older brother (36) suffered from a severe TBI. Prior to that he had been diagnosed with schizoaffective disorder—around age 20—and his life was one medical anomaly after another..lots of psychosis, encephalitis..etc etc. All of his pre-existing diagnoses have been exacerbated tenfold by the TBI. I’ve found lots of articles on schizophrenia presenting after a TBI, but none were schizoaffective was already present.

He currently has the support of our parents, but they are older, and tired. We are a small family with limited means (who isn’t nowadays). I talk to my mom daily and the grief feels so heavy. Like living with your heart outside of your chest sometimes. He has almost a sundowners type rage several times a week, sometimes lasting for days on end. I cannot imagine what it’s like to live with that. I know the best way to show up for my family is by processing my grief through the proper channels, and educating myself on TBIs.

I’m not someone who normally comments online, so maybe this is my first step in trying to find a community.

My husband does not understand. He sees my brother’s intelligence and sadly falls into the category of people who think “if he just did (x) then..” or since my brother is able to do certain “leisurely” things on his own, he should be able to do more. It’s tough. It sucks. My brother is not at a place where he is receptive or ready for therapy, but I feel like if something doesn’t change soon burn out is eminent for everyone.

All the love and respect to everyone on here.

My sister's husband has tbi and has no short term memory - has dementia and Alzheimer's symptoms. His family and friends have dismiss the wife who is the caregiver. He will send out text messages or emails inviting people over and try to have them stay with them. How do you deal with inconsiderate idiots who undermine and belittle the caregiver? He has taking off so many times where the sheriff has to be called. He gets confused and wanders into people's houses or cars. But when speaking he sounds 'normal.' Oh he knows me so therefore he cannot be disabled. That is what people say. His sister is in denial and constantly undermines the caregiver and start arguing - he sounds fine , or will call his kids and harass them. Your dad isn't sick, he knows who I am. He said he was going to call me back but he didn't. His family and friends have never provided any relief or assistance. Their house was damaged with Ian and cannot get assistance from FEMA and their insurance is refusing the claim. A lot of the FEMA employees are at the bars. Nobody gets it.

I have a Brian injury which is a Disability I hate the fact I have one I tell people how don’t have a brain injury your lucky my sisters and brother don’t have it neither my mum

At age 15 i was going to the lake with my friend a week before school started back. Then while we were in the car an 18 wheeler jack knifed the car i was riding in. After i got hit i went into a coma for 6 months, i have a serious traumatic brain injury. I graduated high school at 21 then a year later my sister found an amazing program that i started going to Monday through Thursday, I’ve been going for 3 years. I absolutely love it. Ten years after my accident it feels crazy that so much time has passed. I’m blessed to be alive, when i first woke up from my coma i was mad at my parents for bringing me back to life. A year before my accident one of my friends died, i was very suicidal. I’m in a better place now

My son has traumatic ring injury he also lost his left eye he was in a coma for 2 months of course physically he looks okay I want to know if you know of any support groups in Lowell Massachusetts that would help him he is still quite in denial that he has any difficulties we see the anger when we see his frustration I'm just a mom reaching out

Hi! Can you tell us what program you are doing? Thanks.

Thank you for sharing… great to know that you’re in a better place now. We are experiencing this with our 28 year old son who has a TBI from an accident that he was in over a year and 1/2 ago…

What a great role model you are. Congratulations.

I got a tbi in 1981... Still dealing with it this week...

I’ve had so much pressure put on me to perform to expectations by the legal accident system in nsw Au, that I tried to end my life a few times having not been believed for the injuries I sustained and the brain problems in difficulty in functioning - it took me 14 years fighting for my rights while having surgery after surgery and dealing with brain problems of memory loss, time distortion, sadness, emotional changes that were totally out of character for me, forgetting what I was saying, forgetting where I was going, forgetting to eat, turn off the gas burners, etc, etc - which was all used against me in the court case, where I was trying to fight for my rights for some sort of compensation after my entire life was destroyed; they (lawyers for insurance) said I had pre-existing (no evidence of, just their assertions) munchausens, bpd, delusions, schizophrenia, etc (no prior or current evidence thereof, however), to deny me compensation. Please understand that I have nothing against people whom have to deal with those conditions, it’s just that I was being railroaded by a system that - if it can deny someone, it will - was trying to crush me into the ground by denying my injuries and subverting the justice system by accusing me of being unwell already before tbi and in many ways other than having a tbi. All those things you’ve written in your article I do agree with; but further to that, the systems that exist (I speak of what I know and that is the workcover, third party, and nominal defendant systems in nsw Au) need to be mandated to accept on probability that a person, with reasonable evidence - and they must not be denied that investigation to find evidence (I was denied medical investigation and treatment for years resulting in even more damage) - and unless proven otherwise beyond doubt by the same medical tests that they have a hidden injury that they must be supported and compensated for such. And definitely not dragged through the system for 14 years (for instance), just for the sake of barristers sucking money out of the case, and forcing the person to sell their house and everything they own to fight the insurance companies (what happened in my case). I got compensated but it was nothing compared to the costs that came out of it, and what I lost along the way, let alone my ongoing medical costs and loss of job and future income..or pain and suffering (those were not covered).
So besides the fact that I live with many of the symptoms discussed by many of the people here, I’m still dealing with the secondary trauma doled out to me by the persecutory system and the stigma attached to having had a ‘compensation case’ which rules me out of getting future work in Australia, based on the insurance rules held by workcover insurers (once you’ve had a case, you have to disclose that, and it’s frowned upon and you’re seen as a high risk - so you never get the job).
Anyway, I digress (I have a brain injury)…

I’m 32 years old. When I was about 4 I was misdiagnosed with the flu, but I was actually suffering from viral meningitis. I was sent away after my parents were “educated” on my condition being nothing more than the flu. Well, they brought me back demanding help and were greeted by the best pediatrician in the country, shoving out of the room to perform 3 spinal taps. Back in the early 90’s there wasn’t much on after care for this and my mom told me ever since my recovery I have been different. I went from being a sweet no fuss baby to a wildly overly emotional child with no end in sight for the mood swings. To this day I have suffered severely as well as put everyone I love under the stress of treating me like I’m not some burden. It’s even been perceived by some as my own wrong doing as a young adult. While I don’t believe all my decisions in life have been the right ones, I have never done anything that would cause the type of damage this illness caused me. In my current relationship I have spent the last three years being the problem. I’m the one who ruins the day and all my neighbors I’m sure have heard my voice escalate. What’s sad is that this is not something I was taken to be treated for even though it was thought for a long time damages to my brain were most likely present. Society makes you feel like you are crazy. As a woman I also have to navigate that time of the month when my emotional states can greatly decline and my rage escalates. All women have a sense of this. But with a brain injury that is in and area that regulates mood it seems to make me feel like the world in caving in around me and I’m just here trapped screaming for help but I’m pushing everyone away from me because I know I’m too much and hurting them as much, or more than it hurts me to be this person. I want more than anything to be the sweet kind hearted person I know I am, all the time. If you are a meningitis survivor, if you have any advice, I’d be happy to have it.

I had similar meninges swelling situation however had a cerebral spinal fluid leak after they performed the LTAP. The leak was so sever that blood pressure dropped to a point where they couldn’t draw blood for the emergency blood patch. The pain was so excruciating that I have nightmares and day dream terrors “flinches” about it. It is a struggle but my two beautiful girls keep me from crossing into darkness. Thank you Dee, for sharing your story. I am learning that we are not alone.

Thank you. This article is so true. As someone who experienced brain injury recovery first-hand, (& still is) I can affirm and attest that this is good advice. Thanks for creating this site.

At 16 years of age my husband went through a windshield of a semi truck his friend was driving. His friend was killed and my husband suffered severe head injury. My husband is now 61 years old. We have been together for 20 years. Over our time together I have noticed significant changes in his personality etc. His anger and aggression has become an issue within our marriage. I am trying to be as patient as I can with him but he makes it extremely trying. He is mad everyday. He controls everything I do or say and gets very angry if I have a different opinion. One minute he can be fine and then like flipping a switch he turns into someone I do not know. He refuses medical attention, insisting that I am the problem not him. I am at my wits end. I have tried hard to take care of him, understand him and be there for him. Every single month at the first of the month he turns into a demon for about 10 days. He calls me bad names, throws things, locks himself in his bedroom watching the news or u tube at least 18 hours a day. When this happens I have to do everything for the household alone ie. Woodcutting, yard work, vehicle care or snow shoveling. He is not affectionate and I can count on one hand how many times we have been intimate in the past 3 years. I refuse to engage in fighting with him and now I rarely talk. He has forbid me from my friends, ruined my relationship with my family, makes me quit everything get involved in. I am living in hell but my heart tells me to stay because I realize that his injuries are the reason for this progressively difficult personality changes. He leaves me at least every other month and stays with his friends for about 7-10 days, them says he is sorry and wants to come home. When he does come home he is very aloof for about 3 days, then switches back to his old self from 20 years ago and then we start the same thing all over again. He does not work, he hates everyone and threatens to "kick some ones butt" all the time and then blames me for his anger issues. Everything is my fault always.
Any advice you might have to offer is greatly appreciated. I am drowning.

Hi. I’m also brain injured, and can attest to the fact that everyone has an on-off switch, only ours is more sensitive. Try to remember that. Also, this will be hard, but if he yells at you, find a nice comfortable place that the two of you can have a quiet conversation, and remember to always keep your voice quiet and calm at all times. I hope this helps you.

A priesot I consulted once advised me that "a marriage exists only where love is reciprocal". This was the "out" I needed to hear.
Then when I said I had been praying hard to God to help me, but nothing seemed to change, the priest's reponse was : "God only helps those who help themselves."
that may sound callous but those words were EXACTLY the nudge I needed to find the courage and strength to make that bold move. Over the years I learned to forgive (us both) and become strong and independent and so much happier.
We are not expected by God or society to become martyrs.
Neither does it help the bully improve to be able to continue hurting another.

Hi. How are you? That situation sounds really difficult and sad for you. You are very generous and kind, but you are ignoring your needs in this. Some of what you describe sounds scary. Your husband may have an abi, but that does not make it OK that you are so controlled and isolated. His medical history does not excuse abuse. Please talk to someone you trust. Please get support and advice. You are important too

this sounds exactly like my boyfriend, we have been together for 7 years, he is angry everyday. he hates his life. he tells me he is going to kill himself everyday if he doesnt get his way. he has created a delusion that i have cheated on him and stared in porn. and any time we fight he brings up how i can just go back and do porn. i have never cheated nor have i done porn. he controls every aspect of my life besies work. hes ruined most of my relationships and the ones i do have are strained. he wants to move far away so i am not near my family any more. he blames me for anything and everything that goes wrong. do i know how you feel.

I am sorry that you are going through this. Not to sound like I am lecturing you or anything. But did you know that your husband had a TBI before you married him? Did you study up on people who have TBI's before marriage? Because if you did, you knew what the future held. My son was 25 when he had his accident and had a severe TBI. His girlfriend at the time of his accident knew fully well of his TBI. She knew that he would have personality changes, anger issues, etc. The doctors and lawyers told her this before they were married. She is 6 years younger than he is. They had a 1 1/2 year old prior to his accident. She manipulated him into marrying her and having two other children. Not only did my son have a TBI he also is physically handicapped. Now, she tells him that she never loved him, well we all knew that one. But him having the problems that he did was blind to it and you couldn't reason with him. Now she left him for someone else and is taking him for everything he had. She moved out and has her own house and he has his own house, their marital home. But she is kicking him out (not to mention their 16 year old son who lives there) so she can get the money. He gets or has his other two children every other week, not weekend. He also has those children more than she does. So she is basically taking her own children's home away from them too. I believe that this marriage should have been voided as he did have a TBI and shouldn't have been in or signed into a contract like that.

Anonymous, thank you for posting your story. We are going through many of the same issues. You have helped me to not feel so alone. My husband fell about 3 months ago, but the head injury was not found. He fell again and refused treatment. Suddenly his legs weren't working correctly and he couldn't walk. He finally went to the E R. They found the brain bleed and sent him by ambulance to a larger city. After hospital care and rehab care with physical therapy he returned home. He had many of the traits before the second fall, but after the second fall he became worse. Like you, everything is my fault.
I pray you and your husband are blessed with more good days. I pray you and I are blessed with greater patience and wisdom on how to respond to the new men we are married to. Thanks again.

You deserve to have a life without abuse, control, fear, etc. Basically you are living alone but being tormented by a troubled person...look into borderline personality disorder, depression, etc. Basically its not your job to diagnosis or understand why he is like this, but it will continue as long as you enable and agree to live in it. I suggest you contact a lawyer and ask your rights for legal separation, and take steps to separate or divorce, if you don't want to continue being abused. You should take a class at your local domestic abuse center also to understand your self and get free from self destructive choices.

Oh my goodness. I can so relate all of what you say . I have no idea of how to deal with this . I never know which husband I have . 1,2 or 3 . All different and change at the flick of a switch

I do believe in marriage as a sacred vow. Sometimes though, enduring abuse as you have May not be what's beneficial. My counselor told me that there can always be an "understanding" of why a person may resort to bad behavior, but then treating you badly is still just wrong.
I can sense your heart feels betrayed. And the ping pong game of his control and abandonment is hell.Like your heart is being torn apart. A Big ouch.
He seems to be a narcissist.
Insecure and insists to be in control.
If you feel you're in danger (which emotional abuse really can screw up ones self confidence, at least it did mine to the point you think there's no way out.) Get help.
My walk with God had it's ups and downs downs and downs and is working on an up swing. I didn't understand that God wanted to get me out of the hell. Not condemn me because I couldn't do it myself. I still hear the criticism and critiques in my mind from years of abuse, but I am finally seeing that the lies thrown at me are not who I am. In relationship with God through Jesus He's shone me a new me in Him. Cherished and dearly loved.
You need support, people who see you as you are. Caring, sacrificial, responsible, loving. Not the way as defined by your husband.
A Counselor could help to give you skills to learn how to deflect his assault.
I hope this helps. If not, it's just my opinion.
I've had multiple TBIs. The first one when 9... it's a miracle I'm alive.
But I've had some undesirable side effects.
May God help you through this and keep you safe with the knowledge you are loved by Him.

I am so terribly sorry to hear about the situation you are living in, it sounds terrible for both you and your husband because from what you’ve written it’s awful for you both in different ways. I have a brain injury which is affecting me some years later - I have a difficult time controlling my emotions when it comes to reacting to situations that are overwhelming for me (which wouldn’t be overwhelming for people who do not have a brain injury), and more and more situations are becoming significantly overwhelming as I decline in function (I am 49, and I had a big tbi in 2001 when I was 28 in a motor vehicle incident, and prior to that I’d had at least 120 concussions due to child abuse from when I was a toddler till teenager). I see myself heading towards the kind of behaviours that your husband conducts - the inability to control what is going on inside your head is so internally destructive I can see why he lashes out and tries to control everything else in his sphere of being. Having said that, it is in no way right that he should be doing such things because it’s hurting you so badly, but I don’t think he realises this, because with a brain injury when you are upset your sense of time and what is going on around you isn’t remembered at all (you lose the moments when you’re upset because your brain is so active in other ways that you can’t control, you actually can’t record what’s happening while it’s happening..I hope that makes sense). I was married, but when I had the tbi in 2001 I said to my then husband to divorce, as I knew what was coming (I worked in health and was familiar with tbi). I live alone with no family, friends, supports, or services. I can’t work anymore because my memory and cognition is no good (neuropsychological tested). But I’d rather live like this than hurt someone emotionally because my brain is damaged and doesn’t work properly. This is the only organ in the body that can actively hurt someone else when it is faulty. There are two options you have: either leave him and live your life, and visit a couple of times a week to help out, to save your sanity and safety; or, you stay with him and you actively arrange visits from allied health that will assess and then address functional barriers as best as possible, while you arrange support workers/respite for you or him.
He can’t help it, but you can help yourself - please do that; there doesn’t need to be two suffering because of one brain is sadly hurt beyond what is able to handle this world.
Looking after yourself in this means you’ll be strong enough to help him. If not, this situation as it currently stand is extremely destructive and harmful, for you - and for him.
My best wishes to you.
Remember, this is based on my experience and what I have learned from my life and injuries. Please thinks long and hard about what your life is like, and what you want it to be, and base your decisions on what’s best for you. The reason I say these things above is to show you another set of circumstances to broaden your horizons and to encourage you to see beyond the situation you’re currently in. Take care.

Hi my name is Tammy and I am going through the same thing right now my husband was in a head-on collision on his motorcycle almost died and suffers from severe brain damage he's not his old self and I see his aggression getting worse but with what you're going through for your happiness you've got to run get away from that relationship because he's hurting you you keeping you from living your life for me and happy and that's not fair to you you've given up all your time you getting up your energy and your taking care of everything he's not giving you anything in return you need to pack your bags and leave we only get this one life you you deserve to be happy and to live your life and have somebody love you and respect you the way you need to be loved and respected you and you deserve friends you deserve to be out in the community doing things when he wants to be with his friends what does he do he packed his bags and he leaves you for 7 to 10 days who knows what he's doing and then he comes home and he's kissing butt and being nice and it started all over again I don't know you I don't know what you're going through but what I read you need to get out of this relationship who cares about his injuries anymore you know what don't make it your problem anymore I don't know if you love him anymore I don't know what you feel for him anymore but what I've read you don't deserve that you deserve happiness

Seek some support from a professional counsellor. It's vital to meet your own needs.

Divorce immediately

well im so sorry to read this , I had a bad fall of a cliff in wales in 2002 , I had to be put in a coma for many weeks .I had to learn to walk & this means I can not work again or drive.i was a plumber & builder .I have 3 grown up kids & a 5year old grandson. but I will never be the same person. ive used lots of drugs & now ive been told my right leg has to come off. wow this is killing me. your fellow has a brain which has been broken, I will pray for you both darling try to stay stronge good luck Jamie x

Thank you for sharing I’ve noticed some changes in myself after having a brain injury I can get angry at cars as that’s where the injury happened and struggle to keep up now. my wife is speeding away with her career and I’m stuck cleaning toilets and have a couple life guard shifts I’ve already thought about her probably moving on and it is a real test of determination hope and love I would never hold her back though if she felt the time is right and wanted to then so be it, it’s not going to be easy but she will always be free to choose ALWAYS.

Having sustained a brain injury 5 years ago, I almost forget how angry I was when my parents told me they were praising god from bringing me back after being out for 2 days. I wanted to die only when I could construct a single memorable string of thought. I’ve noticed in the years since I’m venturing to a point in my sleep that when I knock out for the night, I can nearly feel the opium flowing unnaturally through my body. I get to a sleep now that is so deep I say it’s “like the dead” haha. The constant downhill avalanche is what life is after the accident. Eventually you learn that it makes no sense how well you set the table when the table itself is seemingly falling in every direction. The break it takes me to actually meaningfully contribute to a conversation is so slim and rare to come by, that I often spend my time now listening to my roommate monologue for hours about the same medical experiences that I have nearly memorized in plot by this point. Ceaselessly listening to a raspy voice repeat crappy choices dejected from the possibility that reality is false when experienced solely in the visual cortex.

I am going on 3 years with TBI and I feel for all that are struggling with "loved ones" that can't seem to grasp what TBI can truly do to ones ability to live everyday life. My marriage is struggling due to lack of understanding after TBI incident and i still regularly hear him telling me to "suck it up" and that I can "control how i react" or "what i can remember (positive or negative) It has been a nightmare and I pray for everyone suffering this.

I had car roll-over in 2008 with impact to my head. I am in the same situation of being told by my husband to get over it and try harder. You know there is no praise for how well we are doing given the circumstances. I pray for anyone struggling as well. If you read the comments it's another of the other side of people impacting by their loved one with the injury. It's almost ironic really.

My husband has suffered a traumatic brain injury after getting hit by a Car..He is a totally different person also since the injury he started having seizures..I am his wife and his caregiver this is all new to me just getting to know the new him..He dont wanna shower much anymore he isnt affectionate at all its like we are living together but apart what do i do? I am so worried about his well being that i never take out time for my own self..I am always saying are you ok every few seconds so afraid hes going to have another seizure like when he walk out the room, or dont respond immediately to me or even just stares at me those are all things he does prior to the seizure coming on..I have patience its just so hard to adjust to not having that man back that i once knew Prior to the accident..Any Suggestions he suffered Frontal Lobe, and Right temporal Lobe damage and the damage is Significant doctor says.I am asuming the old him is gone i will never get the back..I need yall help on this..Thank you so much in advance!

I am a surviver myself, please don't be cross with me.

I have spent 12 years learning about myself again, not once but 15 times! It's hard for us to explain how we handle things and so much more.

You need to grieve for the man you once knew. I say this from experience. You can build a brand new relationship from scratch, giving is the most gracious thing you can ever give.

Hold him, give him space, love him, respect him. Do things for him, let him learn, guiding gently, being supportive, let him wander he WILL return, stronger and wanting.

Teach him gently, hold his hand. After all he's like a new born baby. Ask gentle questions, smile and love him.

After all he's the man you love...

Thank you, your words really hit home. They were really inspiring and gave me some much needed perspective. All the best on your recovery.

I hear you on so many levels. My husband was also hit by a car and has frontal and right temporal lobe damage. We went through a stage where he did not want to shower as well. I can't imagine how much more stressful everything would be if he were also having seizures like your husband is. Something that helped us significantly (with the showering, at least) was having my husband write out a schedule for himself. I wrote down things that need to be done every day, and things that need to be done occasionally. We settled on him showering every other day and changing his clothes every day. Now he is in charge of planning when during the day he will complete his tasks, but it gives him something to do and he feels proud of himself after he has done it. I have to continuously remind myself that time is the biggest healer of a brain injury. It helps for me to look at him and notice things that have gotten even a little bit better recently. We also started a "reward" program for him. If he completes the things that he needs to do 5/7 days each week, he gets to choose from a list of rewards. Then if he completes everything for a whole month, he gets better rewards. I am taking him to get a massage next week as his first monthly reward, and he is really excited. I hope things get better for the two of you. It seems like he has wonderful support from you!

You seem so beautiful he is lucky to have you.

I have been helping a family member who has TBI. But now I am no longer her guardian, she is on her own. She does not trust me and refuses to sign anything. Her English isn't very good and she has trouble understanding the language. I try to explain to her the best I can in her language and I also use google translate, but she thinks google isn't at all accurate. I shouldn't feel this way, but her refusal to sign things and not trusting me after a year of being her guardian, makes me not want to help her anymore. How do you continue to help someone who doesn't trust you.

I was hit on a Vespa scooter without my helmet on in ‘04 by a drunk drive. I broke all 5 limbs, TBI and epilepsy. I recovered a solid 86% being able to drive automobiles. I can also drink controlled amounts of coffee or beer (one in eight hour time-slot.) I preclude my second opportunity in the vein of an alcoholic. My life is now a 12 step program. Different dynamic, but structured the same.

I have a mild TBI with moderate to severe impairments in certain areas.

And I think that #7 is not a "one size fits all." For someone in rehab attempting to learn how to feed oneself again, sure, that makes sense.

For someone like me, who a) was chronically, toxically independent and b) has severe insomnia, fatigue and about 3 "good hours" a day...and that's all, I'd love for my friends and family to say "let me do that for you." In fact, I *need* that help because I'm a single person.

Suffered TBI over 4 years ago. Single, no kids and on my own. Looking for an advocate to help with paperwork, appointments and basic necessities and reminders. Trying my best but it's getting rough for me

Feels. Help is often quite wanted and needed. Yet for someone who has been extremely independent before, wow what a challenge for assistance. Such a pleasure when someone says "let me...." The amount of gratitude in such moments is near impossible to express

I have had the all and there are worse, trust me. From you are making it all up to almost being arrested for drunk and disorderly. I have traumatic vertigo and was having a bad brain day. I supposed it did not help that I laughed when the Policeman said he was going to arrest me.
I explained and I carry a card saying I have brain injuries and I had a sunflower lanyard in my bag. So I was able to walk him through it all.
When I was leaving I asked him who the desk sergeant was as I know them from ABI advocacy work. He would have dragged me into the police station where all his bosses know me. Maybe I should have LOL

I have been living with a TBI since a severe accident where i was struck by a truck in 1998 as a 9yo child. I have some processing issues occasionally, mainly when my words in my head get crossed with the words i am saying. Pretty comical if i do say so myself. But alot of people dont understand people with TBI. I had what they say were christopher reeves exact injury with the basil skull fracture broken neck and spinal cord all but severred with less than 1/4mm. Lucky to walk talk and breathe on my own. I was in a 4 day coma and woke up saying "mommy i think i got hurt".
Sorry i got off track. I just wanted to say in all of my years having severe tbi i have heard every one of these. And what ive figured out is just own it. People with tbi have what i refer to as the f it mode. After practice i learned to control majority of the apathy and the depression. And always repetition for memory. Always... Say it, write it, read it.

Hello...i am trying to help a 23yo who had a TBI at 17yo. And is stuck as a kid. Does not want to get any better. Does not care that his speech is hard to understand and he mumbles, or working his brain to improve his station. He thinks he is being punished. I scooped him out of the streets after he was evicted. I do not really know what I am doing. I know there are memory issues but he won't even give ot one go let alone try to master a poem or even a comic book. Its tough cuz he's an adult, so he bought beer, snuck it in and then spilled it all over and ran away. Leaving the mess for me to clean up. After knowing no alcohol is a house rule. could he be playing me like the kid that hates school cuz they can't teach me anything, I know it all? Tough love tonight, he got locked out. Rules are rules. I am at wits end at times. Like why would a parent drop a TBI kid at age 20 in podunk America without real doctors instead of keeping him in suburbia and university hospitals? He needs advocates, but maybe I expect too much. Am I suppose to let him go live under the bridge with the heroin addicts? IDK. So he learned how to walk and talk and boom he must be okay and lets abandon him. Thats what I think under it all. I really have no clue. It has been a rough week. So rough that I cant sleep. A stranger stepped in and the TBI has no clue

I realise u left this comment over year ago but thought I'd still comment to say, irrespective of actual outcome, u were actively trying for min of week from what I recall u said. And biggest thing in my opinion at least, is others understanding we cant help it, it's not a choice or personality type, it's symptoms and no one hates them more than those with them. U were trying and seeking out advice from others to help u help them more, wish i had more around me willing to do that.

Horribly stated " does not want to get better " or can he not. Just take a moment to think about that.

I had aTBI at 21 hit by drunk driver. Went to er did all the scans, sent home next day in unbelievable pain. Ended up finding out I had a hangman fracture and all the tendons for my C1-C2-C3 vertebrates completely tore off the spine. Along with many of the small muscles tore of my skull. Had to hold my head up with my hand holding my hair luckily I still had hair back then. They took three weeks to find this after a lot of complaining they only did an MRI to show me it was all in my head what a doctor told me. After MRI I went into immediate surgery. 9” of metal holding my spine together. I was constantly told how different I acted angry, confused, hating life etc. I thought it was just anger that the driver got a dwi and went on with a normal life. I had to relearn so many normal task. I adapted and made a fairly normal life took ten years. At 36 I had a grand Mal seizure feel 18 feet my head broke the fall on to a cement slab. Life has been nothing but hard for the last 2 years. My wife of 17 years wants me gone only reason it hasn’t happened is I am unable to take care of myself. Forget to eat, conversation I had 3 minutes ago no sense of time and horrible out bursts of anger that I have no idea why I do. I had a great job that I looked forward every day going to. Know I am lucky if I can remember why I went to the store. Life sure feels like, Living In Failure Everyday. To many days lately of ready to be done. 4 young amazing kids keeps me going and trying to not give up. Kids are amazing at realizing dad needs help they are more understanding than most adults. Wife’s family tells her to leave me instead of trying to help us out. I used to be a volunteer firefighter and first responder used to like helping anyone that needed any sort of help not anymore. I have a hard time understanding why most people are so selfish?
Any suggestions-ideas that have help you out how to control anger, work on improving memory improving out look in life. Kind of on my last straw I guess.


I don't have all the answers, but I will pray that you receive a miracle and get better. I can't imagine how hard it must be to have to live with an injury like this!