Lost & Found: What Brain Injury Survivors Want You to Know

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Comments (811)

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.

Steven replied on

So true I suffer from both TBI and PTSD as a result of post concussion disorder, several tragedy's I struggle every day since put on social security disability, I love to work I loved to be a carpenter or did I now sit in my make shift shop trying to build bird houses.

Debbi replied on

I also enjoyed working, loved my job! Surgical Scrub Nurse. Would give almost anything to be back. It’s all in my head, I remember the steps to many surgical procedures and skills needed. I miss it. I miss it.

I also hate it when people treat me like I’m stupid! My mind is still there. I just have a difficult time bringing it out.

Christina replied on

My 57 yr old father suffered a giant Subarachnoid Hemorrhage on Feb 11th and survived. The damage is severe and has caused cognitive and physical disabilities. He Remains in the hospital. I am his only child, he has no spouse and the limited neuro-rehabilitation facilities have denied him access to their care. I feel that the progress he has made so far is incredible, compared to the grim prognosis I was first given. I will not give up advocating his rights and will continue to provide him with love, patience and respect throughout this journey.
ABI needs more awarness and hospital staff needs to be educated on the different care needs of this population.

Nancy D Jones replied on

Still needing help for my son 43,before wreak and what they called small brain bleed, has changed him,it's scary to watch my son go from loving husband and father to sometimes a stranger, his thoughts are not right, he was a hard worker now can't hold a job because he thinks people there are not who they are,says Mom I see what there doing, their trying to put spells on me,talking witchcraft and spaceships. Please give us some kind of help, neuro doctor saying he is physio, now that's not my son.No one is helping us

Nancy D Jones replied on

My son got what the doctor said was a small brain bleed, but he isn't the same, wife can't understand she says it's all in his head,but he can't work has strange thoughts, really strange, it's scary, he isn't my son,thinking he see the same people everywhere, doesn't like to go to stores,even has his 15 yr old scared of him.What could be going on, Can't get him help

Ruth replied on

What a great and complete article to refer to regularly. Social success is probably the hardest issue in a recovery

Kathy replied on

Hi, my son wrecked a motorcycle in 2015. He wasn't expected to live 3 days. His brain was bleeding everywhere and nothing the Drs. could do to stop it. A lot of prayers and we have been home 2 yrs. He has a gap where he remembers some things and not others. He doesn't remember 12 grade or graduation and is stuck at age 17 most the time but remembers working. He has a lot of anger and anxiety. The Drs. here are not much help. Any ideas on how I help him I feel lost an alone in this and I know he's hurting.

Karinna replied on

Have a look on Facebook at his injury as a lot of support groups are on there and you might find help near by

Chris replied on

I am here if you need to vent. I hear you. My husband was in a T100 Toyota Truck and hit a tree. No explanation. Amazing how some of my family think he is "faking it". Hurtful.

Cindy replied on

Cannabis oil, FECO

Denny Hoffman replied on

I know how it is to loose ur memory. 58 now and can’t remember anything before 20 or so. They say CTE stage 3. Frustration brings in anger. Remembering what u used to b able to do is hard to deal with. I find when I am told u r looking better today, or it’s good ur eating. Or what ever frustrates me and I don’t like it. Know they r trying to be encouraging but they are not in my body and no idea how I’m feeling. It’s almost like they say” u look ok to me” hate it. I find lithium carbonate helps me with anger and suicidal thoughts. Done doctors don’t like to prescribe it cause not good for the kidneys but it works. I go to a support group. It is good to b with people who know what I’m going thru. I’d he doesn’t go to one I strongly advise he does. He may resist the idea. It’s like summer camp; u don’t want to go but when ur there ur happy u went. Be patient. Know what pushes his buttons. Make sure he gets rest if u can. He needs quiet time. Don’t let him sleep with tv or radio on. Brain still process info even when ur sleeping. It needs his rest. We like to talk sometimes but listening to long drawn out conversations wear us down. Keep it to the point or u will loose him 1 minute into the conversation. Pray for him as I’m sure u do: u are fortunate he is alive. Give him space. Best wishes

Lori replied on

My daughter helps me by filling in the missing info in a very conversational way, whether it’s just the two of us or a larger group. She will say, when with me, remember.... (doesn’t wait for me to answer) and tells all the details to help me remember. When I don’t she tells me what I did or said when it happened. All very naturally without pressure. She basically tells me a story but does it in such a way as to bring me into the conversation. When we are in a group and she realizes I may not remember she does the same thing bringing everyone along so they all add detail. No one is aware that I don’t have a clue but once something seems familiar I join in. The worst thing to do is put pressure on, expecting him to know or be anything specific. The pressure is so horrible that I’m tearing up just thinking about how it feels. I know I am a disappointment to som of my family and I wish they didn’t feel the need to let me know by pressuring me and acting as if I am an idiot because I don’t remember something. One thing we do get easily is how frustrated others are with us and our frustration is nearly overwhelming so adding yours is just too much. The same with expectations. Have some for us but keep them at a level we can handle then feel good about doing well. We need the positive feelings of accomplishments much more because of the constant failures. Hope that helps.

Cindy replied on

My son was in a car accident when he was 17 also he was in the back seat and I didn't have a seatbelt on so he was thrown 35 feet from the vehicle . Actually he lost two and a half years of his life that he does not recall! My son will not accept that he has a disability which makes it hard for him to find a job ,I also understand you saying you feel lost I do two at times too. Never never never give up hope. I tell my 21 year old son as often as possible if God didn't think he could go through this he wouldn't be with us. Lord has a plan for everyone.

Nick replied on

Hello Kathy, I just read your comment. The only thing I can think to say is to Google search to see if there's a group meeting for caregivers of of people with similar injuries in your area. There are groups on Facebook as well. I hope that can help you.

Nicole replied on

I had my tbi in March of 2013. I’m 46. The last 5 years are a blur. All I did was cry and carry on for the first few years. I refused to take any prescription meds. I didn’t want to take anti depressants and put a band aid on it. I want to fix my problem. It’s very up and down and half the time you’re asking yourself if your going crazy. I have short term n long term memory loss. Talking with long time friends and family is like therapy for me. It helps me remember things. Writing things down help me a lot. Avoid alcohol. I always was a wine lover but it completely exacerbates my brain fog. I feel like my brain doesn’t work, however, I have a high functioning job and I’m a single mom of three girls. My boyfriend is my only daily support. He’s very understanding so that helps. From the outside, everything looks perfect, but my head is a complete mess. My neurologist prescribed me adderall. I don’t think that does much for me. The first time I took it, I fell asleep!!!! It helps me be more social maybe because most days I want to lock myself in my room all day but I can’t. I can push myself now...five years later. I definetly suffer(ed) from some type of chronic fatigue as well. I would have to take breaks as I got dressed in the morning. I would drop my children off at school and go home and take a nap and go in work late every day, Thank God I had a job that allowed me to do that. At one point, I thought I had MS. I couldn’t walk up a flight of steps without feeling like I worked out my legs at the gym for ten days straight with heavy weights. I increased my magnesium, added amino acids, cbd oil and MCT oil to my diet and that helped tremendously. You end up laying around because that’s all you can do!!! I gained 20 lbs that I’m still trying to get rid of. I have also done some “Keto” diet things like adding more fat to my diet. Good fats. Good Fat is awesome for your brain. I am finally on a gym schedule that I stick too. That has definetly helped in the happy department. I have recently tried thc oil. Thc oil makes my brain work like I’m 25 again. I was always creative and funny. I feel so DULL now. There’s a side of the thc that I love and another side I’m not so sure of..maybe a little paranoid. I’m working to find natural solutions. Hope this helps

Deb replied on

Thank you for taking the time to write this. I’m sorry for what you have been going through. I hope each year life gets better and better for you.

My son had a severe TBI at age 21. He’s 29 now.
The difference between you and my son is, he’s not self-aware that he’s brain is different, dqmaged, or that his abilities have changed.
It took me years to understand him better, and adjust to his “new” and often hard to cope with personality, since his TBI.
His frontal lobe was most affected in 3 areas. Also there was some parietal and temporal lobe damage as well.
I wish I had read your post 7 years ago, instead of slowly realizing over years that there are things about him, I cannot change or help him to do better.
The only thing that hasn’t changed is his appearence, voice, and his politeness. His personality is the hardest struggle to live with. He changed in personality the way the famous Phineas Gage did. Not in a good way at all. I walk a fine line with him, knowing he often acts like a child, but knows he’s a man and wants to be treated as one, even though he has many childish temper tantrums. He also breaks things and has gotten physically violent. as well. The physical violence has stopped for a few years now. Whew!
I wish there was a way to repair TBI’s the way other organs in our body can be repaired. Maybe someday.

My best wishes to you. Thank you again.

Stephen replied on

I read your letter and have had a TBI for just over 40 years in July of this year I am no neurologist but parts you have written about I take it that your son has had frontal lobe damage because that is where the Amygdala is which controls your memory, Behaviour, and it gives a person Emotional Control know that about the brain because I see a Consultant NeurPsychologist every 2 weeks at home only at home because over the years I have had 18 operations I do drive but at the moment it has been not travelling 12 miles away at the moment to the hospital I'm sorry if this is boring because I myself would sooner talk to someone over a phone or even see them, then you would be better to answer questions Stephen by the way I got run over by a drunk driver when I was 23 years. old and it's been hard learning everything all over again but I am alive.

Shannon replied on

My husband has an AVM and as a result of a blocked shunt he had a subarachnoid hemorrhage and stroke Dec 20/17. On March 6/18 he had a secondary hemorrhage. Both of these were huge. Reading the posts has helped me know a bit more on how to talk to him in a more positive way. He's not talking currently and it's hard.

Carolina Vera replied on

omg my mom had an avm hemorrhage in march too and it's so so so hard but it is getting better slowly and this article made me realize why my approach has been wrong. it will get better !!

Dean Litzenberger replied on

As I approach my (5) Year Post M.V.A. ....I still keep looking at & reading through this article..thanks again, you made MY path to the "New Me" a lot smoother....Godspeed to all on the path of their own revovery..

Denny replied on

I haven't posted my progress in a while. I'd rather reply to others and try to help. I was diagnosed possible CTE 2016. I'm somewhere now in stage 3. I don't plan to see stage 4 through.

Is there anyone out there that can give me an idea how long I will still be able to work and function? I am self-employed and my job is pretty mindless but I know I don't have the capacity to learn a new job if I had to.

Told now that I may have Focal Neurologic Deficit. Found out today. I still don't know what that will do and how long that takes. I don't know a lot now. I have no insurance but just donated my brain to Boston University CTE Research Center and they are trying to steer me to a doctor who will take me. I advise you all donate the same. They don't get any walk-ins. Lost train of thought...

oh, is there anyone out there going through what I am or has cared for anyone who is where I am at and where I'm going? Let me know if you're out there. This just went from bad to worse.

Tami replied on

I completely understand how you feel, ive worked with ppl with TBI in the past and believe it might even be possible i suffer from it also.

Tracey replied on

I’m trying to write this as fast as possible. I’m not officially diagnosed with FASD however, it has come to my attention after seeing a picture of myself at age 7, relating to so many symptoms and then I get here. TBI. I am 52 years old and spent my whole life with headaches, being called clumsy, insomnia, got put in a State mental institution where they diagnosed me with conduct disorder, etc. I have been diagnosed with everything-mentally possible. It was the year I turned 39 when the headaches became unbearable migraines. I was diagnosed with Arnold Chiari Malformation. I did my homework on this before I decided to add my first ever comment...It appears that I was born with some type of cerebellar abnormality, that in 1965 no one would’ve caught because it wasn’t bad enough to catch anyone’s attention and no one did mri’s back then. My mom accused me of faking the headaches, stomachaches, vertigo as a child and they all made fun of me being clumsy. I had decompression surgery but still suffer from the same symptoms but not to the degree as before. I was also born with severe gastroospheagal reflux disease and everyone noticed that-I projectile vomited every time my mother fed me. That was cured in ‘65 by adding cereal to the milk. Off track, sorry. I had/have a physical brain injury as a result of my mother’s poor choices, my life has had way more downs and I’m diagnosed Schizoaffective bipolar type-Borderline Personality Disorder-ADHD-PTSD-Anxiety and Panic disorder. I’ve been arrested. I’ve been a drunk. I’ve lost everything. But, I have a son that is saving my life. Because I didn’t drink while I was pregnant-but I was sure sick raising him. He loves me enough to forgive me and while I cannot work anymore, he takes care of me. I don’t hate my mother, I just wish she would own up and apologize. Sorry for the way to long story. Thanks for letting me tell it.

Denny Hoffman replied on

Wow, Tracy, that's a lot. I never put in one than more comment but have experience in this too. My first wife, about your age, was diagnosed basically with all you have described. We had kids together which I wound up raising without her. She too was put away. She had a bag of pills she would take but they just masked her problems. In regards to your son; I'm glad you got his forgiveness and now is a blessing but it doesn't seem you have done the same for your mother. Don't expect her to apologize. Sometimes you just don't get one. Put that burden away and forgive her. It will help you a lot. Know its hard and it sucks, but for you: do it. I never preach cause it either helps or gets people mad. I am only going to tell you what happened to my wife. She struggled through, drinking, drugs, everything she shouldn't have been doing and became homeless. I know she tried hard to be straight and be a good mother, she had her good moments but went back to her demons. She wound up on her mother's couch. She started going to a born again, bible preaching church and gave her life to Christ. He turned her life around. She was doing great. Its just her body took such a beating all her life; it gave up in her sleep. God saw fit to take her. Her struggles are over and she is happy. The point is: God turned her life around. Doctors can't do it. If you have exhausted everything and you want your life back; He is waiting.

Darleen replied on

This is is awesome. I was hit be a car while sitting at a bus stop resulting in near death injuries, literally taking over 10 years to regain 90% of my motor function. I had enclosed brain trauma but because my physical injuries were so bad no one ever looked into the remaining brain damage once I could walk, talk and feed myself again.
All this stuff applied to me years later and some of it still does. I remember that one day my husband literally cried and laughed that his wife was bad, I told a very sick and bad joke that shocked everyone.
This article is going to help a lot of people that are caretakers and even patients, even today I found something here that I didn't know so thank you. Thank You

Grace replied on

Thank you for giving me a voice. I was 15 when my TBI occurred. I’m 52 now.
I have started having memory issues, night seizures, balance difficulty, and noise is so horrible. Being in a crowd is frightening. Thank you again.

Jamie replied on

It will be 30 years since our son's TBI. It is still difficult for family when he is in public and causes them embarrassment because he interrupts conversations constantly and corners people he knows with lengthy conversations. It has been next to impossible to help him remember how to deal in social situations. He does not have anger issues but he has no filter. Injured at age 15 in most areas of daily responsibility he is stuck. Any suggestions would be helpful Thanks.

Chris replied on

I am here if you need to chat. My husband, Gary, talks sometimes to people in very scary ways that would get him shot. I am here.

Ruth replied on

It could be he's very unconfident about whether he can make people enjoy his company, perhaps help him focus on when he is nice to have around by telling him , which will will ease his worry

Anita replied on

Hi I have a brain injury. Thank you for bringing this up. I perhaps can see me in him. I had great doctors and therapists going through many and finding them. Life was super hard. Some good friends knew my difference and loved and helped me more all the same, and helped, others, disappeared, my family, says, do not talk about your pain or anything, no one wants to hear it, i am songle, 57 now, accident happened at 48, i used to be able to handle all social situations, kind of shy, yet spoken when around comftorble people, family members, all extended family, the memories of past love and memories are wished to happen in the now, to be called and ask how i am doing is huge, for my.sisters to call and ask if i need any help, to talk about any issues i might be going through. Or anyone in my family, for them to actually ask me if they could have my paperwork and read it of my diagnosis, so they understand, to help guide me through so i do not feel alone, to acknowledge me and have their children, or even their childrens children, understand and come see me, they do not, i feel isolated, in this whole thing, and i find myself, doing just that, talking with strangers about my situation actually about these things, counselors, theralists, psychologists, i have spoken to do not feel family and support is important, i have asked for help to write a letter to them, i have heard, i do not communicate with my brother, and by my sisters husband, he is mean, i myself wish there was a program or group to help me with this. I spend a lot of my time looking up answers on my internet on my phone, watching tv, so i feel i am included in something, i am in pain, in my feet, my legs, back, hips, spine, arms, and head, 24/7 daily, and i do believe with more love and connection, i would do a lot better with help, love, compassion from all of my relations, cousins, etc... those past memories are huge...and best to keep new ones coming. No excuses from anyone of why not include him. The more of me being involved and invited or being seen at home with others and involved, the more the mind realizes of what needs to be changed and how to be better in time. Yet us that have the brain injuries can not get better, with being ignored. It is a process. It will get better. He knows from observing othersand will learn. It will just take time, love, and patience. In the real world. Be nice, be nice, be nice, and in with others. He may just happen to settle down. Wishing you all the blessings in the world

Mirren replied on

Anita, thank you for what you wrote - it made me think and cry and learn. Wish I could give you a big hug. Thank you

Anonymous replied on

Yes, yes, and yes, being ignored by friends and family is turning me into a hateful monster myself.

Angela replied on

I understand very well- I think I need to be more aware of this myself- I am ok when I am well rested, however if I am tired, or a Loud Noise, or if there is a lot going on (even when there is not much going on sometimes) - we try to over-compensate sometimes, especially if we haven't seen someone for a long time, we feel that we have to catch up with them, and we sometimes or a lot of times tend to repeat ourselves. My Prayer is for the Gap of Misunderstanding, Confusion and Heartache to be Bridged by Love and Understanding- my wreck was 15 yrs. ago-

We feel very misunderstood, we Pray and Hope for a glimmer of Compassion in the World- to increase awareness in the TBI survivor as well as Understanding in others will be the beginning of Bridging this Gap- we feel we are trying to be back in the swing of things- we often get overwhelmed in social gatherings, there are a few different "filters". We sometimes get anxiety like things going on at the same time and when area gets more busy - our senses don't work as well after injury, and these main 5 filters that help filter our senses, well they don't work as well after TBI, Traumatic Brain Injury is a very Life Altering Event in ones life.

My Hope and Prayer is that Compassion and Empathy as well as Understanding will help. Maybe take your son outside with a few people at a time, maybe a park rather than a busy restaurant- busy to some may not be for others. (He may need a break once in awhile- commotion and noise as well as sensitivity to light) We want to be the same as we were and this may lead up to frustration, also frustration for not being understood, and the feeling of being left out )

And as far as family members being embarrassed, my suggestion is for them to get a link to this website and other websites that help with Understanding- My Prayer is for Acceptance and Understanding. it starts with Educating oneself about Neuro Injury also will help in understanding that there is a difference between Neurological and Psychological.

This is good this is the start of helping Survivors of Brain Injury, a very hard to understand, often misunderstood, and very difficult issue. Thank You to All that are willing to Learn about this issue. March is Brain Injury Awareness Month. It is also my Prayer that people empower themselves and TBI survivors to keep getting stronger, Acceptance is so important for us, and then maybe not use so much energy on worrying about what others think, and move on to concentrate on Wellness, finding Coping Strategies, Finding a New Normal, and Accepting Limitations. Eventhough some injuries get better ( like for instance some of my issues have gotten better, some have got worse, however my acceptance of my limitations is getting better- example: my dizzy spells have got worse, however my Acceptance Level of myself has gotten better, lessening the Anxiety and Stress that often times sets off some Medical Issues- It is quite Complex just as the Human Brain is Quite Complex.

As I get out and about experiencing more Experiences that have Compassion and Understanding also my Spirit can feel less loneliness and more positive vibes, these Wonderful feelings and vibes allow more healing. Wonderful Healing is my Prayer for Everyone. it is also hard for loved ones ,because they may put up blinders, part of them , well they don't want their family member to be hurt by this, hurt by TBI- for years no one knew what was wrong , sometimes they didn't take the time to find out- My Prayer is for Love to Heal. Every Injury is different, however very much similar.

(Note to my Family: I Love You, I Hope that this site helps us, "Love will Heal Us", and a very familiar one: "Always in My Heart", We have started the beginning of the Bridge of Hope, thank you)

Everyone Thank you for taking the time to click on this link for the beginning of understanding to start.

Have a Great New New Year, 2018. Hope for Healing in Our Hearts.
Sincerely,

A Listening Heart Prayer Ministry

Mary replied on

I just want to read what i mean, even reread it to appreciate that I'm really okay to heal. Thank You!!

Cassandra replied on

I hope you take time to read

Melissa replied on

Sigh. I get so tired of disappointing people. I wish I could be who I was.

Lori replied on

Me too. I’ve started trying to think of it as instead of trying to find my old self and since I have to start over anyway, to just rebuild the old me. My sister says “how great! You can be whoever you want to be now!” I’d rather be the old me. Then I knew what I knew, now I think I know but it just isn’t there.

Angela replied on

My Prayer is that we find more understanding in 2018, Compassion and Empathy is what we need. There are Blessings for us and I have been trying to not be focused so much on worrying about what others think. it is frustrating when there is an information gap and that people don't understand. I am currently trying to patch up 15 yr. old information gap. We might miss the Blessings that may be around the corner if energy is used towards worrying about what others think ( I know how it feels and alot of us do) I believe we have Hope in 2018, I was told in Grief and Loss Group few years ago that it's a Re-discovery of ourselves, and it is my Hope and Prayer that Survivors of TBI send this link to their people and I think people will start understanding better of how this affects us.

My heart goes out to you, and no one should ever feel that way (I can relate and many of us can. we have an added hardship in someways, the injuries are not seen, and I think sometimes people think the TBI survivor can somehow "snap out of it". It is my Hope and Prayer ( and I believe that websites like this is the beginning of bridging that gap in hopes that people can come together and meet in the middle of the bridge. Acceptance would make it easier for TBI survivors to start Accepting the differences in their lives after such a Life Altering Event. It is my prayer that Family will ask more questions, and try not to ignore the issues surrounding TBI, and is also my prayer that Loved Ones would Learn about Neuro Issues and TBI. This helps the Healing Process tremendously (currently working on this with my own people).

Keep your chin up :) You are not alone, There is Hope,
Blessings and Peace to you,

sincerely,
Angela in Colorado

Susan replied on

This says what I wish I could remember to say to people. I am amazed at how rude people can be, I usually just walk away because they will never understand because they do not see an injury.

Angela replied on

Yes, I understand, I think they don't see our injuries and there is a information gap that takes time to Bridge. it is my Prayer that we can somehow Bridge that information gap with good information and also I think websites like this will Help Us and I think Doctors and Professionals are understanding TBI better,

This List of Symptoms and what we can do to help others with TBI and other Neuro issues is SO GOOD, SO AWESOME! This is helping my Family understand and helping me in Accepting Limitations, and brings some of my symptoms down. Coping Strategies are next on my list and Taking Care of myself better.

Have a Great 2018, I believe it will be so Good, and I'm going to think of things I can do for March, Brain Injury Awareness Month that is coming up here soon, this Spring. I want to pay it forward for all the Wonderful Help I have received,

Thank You also for everyone contributing to this Website. (I do believe that this is part of the beginning of a lot of Progress to help Loved Ones to understand as well as TBI Survivors to better understand what they are going through, this is such a Confusing Issue and I am so Blessed that I was referred by a friend to this as a Link).

With a Hopeful Heart,

Sincerely,
Angela in Colorado

PL replied on

I’m heartened to read this list of “don’t says” because I sometimes do intervene when my husband has forgotten to put the coffee tray + filter in the pot and water is spilling on the counter. I need to remember that he is having what we call “a glitch in the matrix” and is trying so hard to remember what he’s doing. I can relate to his memory and frustration issues-I May have an old TBI myself from a bad car accident as an infant-but his injury is 11 years old and he had a vibrant life beforehand. I actually can’t believe how well he does most of the time. Here are a few requests I have of him and hopefully they are fair to ask:

Share when you’re having triggered moments. I forget that you struggle if you don’t tell me because you’re such a hero the majority of the time. When I’m aware, I can be much more empathetic and helpful.
Take the space you need to let your brain retrain or rest. I can handle things around here while you’re rehabbing. I trust you, I know you’re not a slacker.
Be honest with me about what you need. It’s not going to hurt my feelings if you don’t want breakfast or a back rub. If you receive these things but they make it worse for you, my mission is not accomplished. How I think I can help and what I can offer isn’t always what you want-I get that.
Don’t isolate if you don’t want to in order to protect me from your lack of emotional presence. I would love to be asked to be near but that you need quiet. I try not to take it personally, but I don’t always know what’s going on either.
When you are chasing your fear about whether it will always be this way or trying to figure out what caused the trigger, know that I’m not expecting answers or hoping you’ll hurry up and figure out a solution.

Know that I love you and I’m not going anywhere. xo

cf replied on

PL - as a brain injury survivor, i would like to tell you that we don't always know when there is a trigger or something is not working for us. that is a big part of the "problem". i know that people want us to tell them what is going because it would be helpful to them but that is not how it works - at least for me. maybe the next day i can see or think about it with perspective but at the moment i don't realize because i am "in it" - it being the situation at hand ie: spilling coffee or a loud store or a truck driving to fast near me being thirsty, or a headache coming on or etc. it is hard to know ourselves let alone explain to others. just fyi. but your comment seems like you care a lot and try hard. that is why i responded to you.

Deb replied on

I really need advice. I am dating a veteran who has TBI as a result of being injured in combat. Sometimes it seems like he just wants to be alone but does not tell me. He also seems insensitive to my needs and would rather be sleeping. I don't know whether to take this personally or not. I am trying so hard to have patience with him. When I bring things to his attention he is so apologetic and just so loving.

I care for him deeply and I just need advice on how to hang on because sometimes I just feel like letting go since he seems a little detached. He tells me he loves me and wants me in his life but has a hard time really showing it. And frankly, I am not sure if it has anything to do with his TBI. He also says he suffers depression.

I just would like some advice because I do love him and I need to know what I can do to help him.

Thank you!!

Jessica S. replied on

Hi,
My husband was in a car accident in 2011.  His personality changed after it happened.  We didn't know he had a head injury until 5 years later. My husband struggled with sensitivity to light and sound and was extremely irritable. He struggled with severe anxiety and depression and he slept all of the time.  The happy go lucky guy he used to be was gone.  He couldn't remember things and was freaked out in social situations. We couldn't even go to the grocery store. He was constantly saying we were talking too loud when we weren't and no longer wanted to be around family or friends.  He was a social butterfly before the accident and after became a recluse.  I thought it was stress.  He's my best friend and we were very close but after he was distant and indifferent.  

Please....  don't give up.  It is hard when you don't understand a brain injury.  My husband apologized all of the time for his behavior and then would feel guilty.  He couldn't control his moods.  Read everything you can on brain injury.  I know it's hard at times but hang in there.  My love for my husband got me through.  I realized that the man he was pre-accident isn't coming back.   Certain aspects yes...but what he was before no.  I think when I let go of waiting for him to get back to "normal" or his old self I learned to move forward and learned to love who he is now. 

He needs a good counselor, neurologist and someone who can possibly help him with medication like a psychiatrist. He also needs you or someone to help keep him on track and be his support.  My husband was suicidal and 6 yrs later with lots of trial and error, counseling, cognitive therapy and love he's doing better and we've adjusted.  It takes time. I have so much to say and not enough room to type, ugh.  Stay positive and read read read so you understand the effects of TBI and can better understand him and what he's going through even if he doesn't. Patience when they have none. Understanding and kindness when they're irritable or angry.  And support when they feel low and frustrated.

Denny replied on

TBI is hard on spouses both male and female. I am TBI barely surviving. Told high probability CTE stage3. Now also Focal Neurologic Deficit from multiple injuries due to Street racing in my younger days then stock car racing. There are TBI support groups for caregivers. Sure u all know that. It's hard for me cause no one understands. Oh, they say they do; but no. It's like we have a new personality. And not new or improved. Its hard for our loved ones to see the change and there is nothing u can do about it. Seek a support group. I attend one for me. Nice to be around others like me. I can be myself and say what I want without raised eyebrows or feeling stupid. I thought I was highly intelligent at one time. Now have problems with simple math. And thank God for GPS. Both survivors and caregivers should attend support groups. There is more of us out there than you think. Find them.

Denny Hoffman replied on

Deb,

I have been diagnosed with high probability CTE stage 3 from multiple concussions and head injuries due to auto racing.  The best advice is patience, understanding what he is going thru and his state of mind at the time and probably most important: don't take anything personally!!!!!!  I am older and have had a lot more hits than him so I'm going off how I feel to relate to him.

He needs his alone time. Some need more than others. That is the time we use to quiet all the noise of things going on around us and helps us recharge or sometimes just cope when we are overloaded. When he is done with that time; he will come to you. A brain is like a computer. TBI is like a virus. It corrupts files. Slows things down, and can crash and go into safe mode. That happens to me and will to him. We can only process so much information. Every day is different so if he has a good day; don't expect the next to be good as well. May not happen. And if he has a good day; don't think he is healed. It takes time.

The words men love to hear "we have to talk." Keep it short and to the point. NO fluff or he will shut down 1/2 way through. Not that he doesn't care; but info will stop being processed and he will have no idea what you're getting at or remember it.

Fatigue is a problem. It's not that we don't want to do or go where you do; it's that we are shot mentally and physically and just don't have it in us.

Make sure he gets enough sleep. He will require more because of the damage. Make sure he does not sleep with the tv or radio on. When sleeping your brain is still processing what the ears hear so it doesn't get a break.

If going out try to plan things that don't take all day. We start to drag early afternoon. At least I do. If going out or to dinner; go out earlier. Try not to get a late start.

I am NOT, I repeat NOT a drug guy. After having a breakdown in a brain trauma emergency room, they gave me Trazodone 100. I take one 2 hours before bed. It helps me get a good night's sleep and doesn't make me feel like trash in the morning. Also helps with depression. I struggle with that every day.

Don't forget; our thought process now is not right and we are apt to do things without thinking of consequences, so be aware of his state of mind.

Depression also looks like we do not care. That is so not true. We are just in survival mode. I flatline emotionally. He may too. Again; please do not take it personally. We are just emotionally shot. Sometimes the light is on but we ain't home. It is hard for us to watch how it affects you, just to let you know. We realize we are not living up to our end and giving you the attention you all need. It bothers us A LOT. We beat ourselves up over that.


I hope he is on the mend and this will all go away. The brain has a way to bypass stuff if not too badly damaged. I don't know if you go to support groups. They have them for us and ones for caregivers, which you qualify for. I don't know your faith. My wife relies on God a lot. It helps her.

I think the question here is what is your commitment to him; not his to you. Unless you talk to his friends and he has been that way all his life; then he is really doing the best he can. My son is a Marine. He has the same problems your boy has. He was the lead driver in the convoys; all the time. They knew he would get them through, but it was at a price. I believe most that serve have good morals and values. They get tested in war, but they do come back. Have faith. God bless you.

Emily replied on

Thank you for sharing your perspective! I teach people that work with people with TBI - and a huge component is around working with family members, and helping them understand. I would love to use some of the analogies and examples you have used within my teaching, please let me know if you have any concerns with me doing this.
Kind regards, and best wishes
Emily

Tami replied on

I think thats a wonderful idea Emily

LW replied on

Thank you for sharing. I had no idea that others feel exactly as I do! My husband suffered a TBI in 2005, had been doing fairly well until a few months ago. His issues have worsened and we are both scared of what the future brings. But your list did bring up a lot of patterns that will help me when I discuss with him.

David Hare replied on

Read through a handful of comments that all made too much sense. Have been out of Shoc Trauma and Kernan Rehab. for years now after my accident. It all made so much sense it is almost scary. Have been well or am always recovering for years now. All I can say is bless you all, it is a long road recovering. One day reachable by us all. Keep on and we will all one day. ,Me

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