The Most Helpful Thing Someone Has Done for Me Since My Brain Injury Is...

BrainLine
The Most Helpful Thing Someone Has Done for Me Since My Brain Injury Is …

TBI defined by the people who are living with it ...

BrainLine asked our online community to share the most helpful thing someone has done for them since their brain injury, and the list below captures some of the many responses so generously provided by people with TBI.

Every individual’s experience with traumatic brain injury is unique, but there are many common symptoms and emotions. Anger, fear, sadness, and anxiety may be accompanied by difficulties with memory, pain, and the challenges of maintaining relationships.

We encourage you to add your own thoughts in the comments section below, and to join the BrainLine community on Facebook, Twitter, YouTube, and Pinterest.


Let me be myself without judgment.
– Deb

Exercised patience.
– Thomas

Loved the new me!
– Kate

Stayed my friend, accepting that I'm not the same as I was.
– Darla

Let me talk! Listening is important!
– Anonymous

Been patient with me when I was going through the worst of the depression and moodiness.
– Amy

Understanding that I might not have a whole lot of impulse control at times. .
– Amy

Taking up the slack when I needed it while still allowing me to be a full-fledged adult.
– Amy

Take the time to learn about my difficulties and learn how to best help/advocate for me.
– Kimberly

Took care of my 2-year-old so I could have quiet time at home.
– Amy

Called me and asked to have lunch just to check to see how I was doing.
– John

Offering me their guest-room to lie down in during dinner parties at their home.
– John

Having a friend, just being with me for a long weekend, just because they cared....and when it was time to say goodbye they hugged me, and long after I thought the hug should have ended, they just kept holding me until I stopped crying.
– Buster

Made an effort to learn about brain injury.
– Amy

Remind me of things I forgot.
– Marc

Don't try to "fix" me.
– Sonja

Gave suggestions to me, but never pushed them on me, allowing me to make the decision.
– Carol

Show me kindly a new way of doing the same task more efficiently.
– Naomi


Posted on BrainLine August 27, 2013.

Comments (87)

I thought people were helping me when they really weren't. Now no one helps me.

A friend before and always, someone to just listen and be there!

Thank You Brother, you are the beginning of the Bridge of Understanding that I have been Praying for. Thank You for wanting to learn more about what people go through after TBI. Thank You for going to the links to read more about it and also Thank You for all your Prayers. You are appreciated more than words can say.

Thank You Brother (so valuable for me, will help me better accept my medical issues and the affects of them and will help my New Nuero-Pathways, the part of me that is still struggling to remain who I am) from A.G. written June 30, 2018

I just found this site. I am a 67 year old who suffered a TBI 40 years ago when no one really knew much about the advances that exist today. I am part of the invisible group of brain injured as I sustained no external damage, just internal concussion, contusion, skull fracture, stuttering, short term memory loss and executive functioning deficits. I've fallen and hit my head once again playing pickleball and then again catching my toe on the bracket that keeps the carpeting in place. I understand about Neuro-Pathways, but who can I go to - to help me with this. Suggestions are welcomed. Thank you.

Prompted me and gave me cues to help me stay focused and remember so that i could carry on as well as I can, especially in conversations.

It's so hard because my family will not even take the time to learn about brain injury and mine is quite severe. Fortunately, I have a TBI caregiver who comes 4 times a week for 5 hrs. She has been so incredibly helpful to me...from speech therapy to chair yoga and meditation. Meditation has been really helpful!

Nobody in my family believed any of the TBI symptoms were and are put of my control. They wont read anything I try to make them understand. They blame me and judge me. That just causes isolation and a ferling of being undervalued

I am so sorry to hear this. I care for my husband who has a TBI. We were in a car accident in July. He had very little chance of survival in the beginning. Our two friends in the accident passed away and somehow I walked out of the hospital that night. Many have been hateful and written my husband off because of what happened. I have done this myself with him 2 hours away and two young daughters at home. I pray he hardly notices lack of support and visitors. That's a little of what I am going through, but I just can't imagine how you must feel and would love to be there for you if you need anything. I feel I went through all of this for a reason somehow and if it's only to reach out and be of assistance someway, even just to listen. Then I can do that. Because before I had no clue, and I wish then I would have at least looked into it and been there for someone. You should most definitely feel you have value and a purpose. But I understand that when the people's opinion you value most is not the least supportive it's a little hard to think differently.

How did you find a TBI caregiver. Have been seeking someone like this for past 3 years with no luck.

Not sure where you live, but I am from the suburbs of Vancouver, BC, Canada. Here, the caregiver is provided free of charge through the Acquired Brain Injury program. I spent 11 months in hospital, and I have had the same caregiver since discharge almost 5 years ago. I will never be able to drive again, so I'm so thankful to have transportation to all my appts. Where do you live? Perhaps we could offer some suggestions. I have also developed some fairly important links who may also be able to help.

Listened and understood my loss and grief because she had gone through the same thing. Let me cry until I was cried out and ready to move forward.

I was always told to quit my crying by my friends

Quit saying this is how you should do this or that, instead say this is how I would do it. Helps the individual who is injured be able to make their own choices.

Being patient with me, encouraging me, and helping me to be independent still.

Looked up information about brain injuries. They did not treat my brain injury like it's a taboo to talk about, and very rarely brought it up.  We talk...they not only listen to me; they hear me.
 

Took my suggestion and read this website. Particularly "For Friends and Family" My mother read it and I was so happy. I finally found a place that could best describe what's going on with me when I cannot. Thank you very much Brainline.org.

I haven't had one and there are multiple:

don't judge us,
be patient,
don't mock us,
learn to know the new me,
accept the old is gone,
stay close for the trials and errors that are coming,
don't walk out of my life because being abandoned is the worse feeling in the world.

People will just make fun of me. There is no support. I have been made fun of all my life

As a caregiver, this is incredibly helpful to read. It is all excellent advice, Thank you. I will remember this and do my very best. 

Being understanding and words of encouragement

As part of my therapy, my wife had me watch Fox News and recite the headlines to her after work and my dad still calls me on his lunch break and my TBI was on June 8, 2013. The main remedy for TBI is love, patience and understanding.

Let me be who I am not who I was! My brother ( who wasn't allowed to see me in hospital - would have been to traumatic , I was in a medically induced coma to keep things under control ) said I wasn't 50, 80 or 90% back! He said I was 100% back! Yes I had a short fuse before too! I cried when he said that! The so called man I was with at the time, couldn't handle the positive attention I was getting for surviving TBI and a stroke! He told me on New Years Eve after discharge that he wished I had just died! He had POA over me! What he could have done? ! And my hunny now tells me daily how awesome I am! He's so protective of me too! I am in the best place possible now! Working at something I love! And I went to college post TBI and received honours in PSW course! I truly LOVE the NEW & Improved life I have! My family us still 100% there for me as well!

The most helpful thing someone has done is... ... provide me kind constructive feedback when I'm having a brain moment and need to pause, restart, & use my strategies. ... defend me and my need for prescription pain medication when someone else tries to claim all pain patients are addicts. (PS: WE ARE NOT!) ... install hardwired / in-seat heated seats so my back wouldn't hurt so bad when driving. -Audrey

I haven't found one person that accepted me as to being the same as I was before.  I have no friends.

I can't find anyone that accepts me like before it happened.  I'm still waiting.

I hope I find someone soon, I'm running out of time, it hurts to be alone in a crowd!!

Odd the little warning below is as compassionate as it gets.

I too have TBI after brain surgery I had 9 years ago. I have some personality changes, and mild memory challenges. People around me act differently toward me. Maybe because they don't understand it, or becsuse they simply are afraid to talk to me. My son who is 46 years old, has had many concussions throughout his life. And recently started having seizures as a result of these multiple brain injuries. His short term memory is still very bad. His friends don't know how to cope with this. And I believe that makes them uncomfortable around him. So they just aren't coming around as much, any more. This is very difficult for him. I am hoping that as time goes by, the NEW friends that my son is making will be able to except him as he is now, instead if comparing him to to how he used to be. If someone in his life only brings negitivity, then they are not helping him. And he has to let go if that person. Learning to cope with our brain injury may be hard for other people. But if they truly live us and want to help us, they first need to understand us. This website can help our friends and family do that. But if they still expect us to be the same as we were befire our TBI, then maybe it is best to let them go, and find new friends. Maybe we can't change what has happened to us, but we CAN change the people around us, if they only bring negative feedback into our life.

I found out last year that I suffer from tbi my of 6 yrs has sealed with my mood swings forgetfulness anxiety my inability to trust ppl etc I got hit by a car when I was 5 and now 42 it has at x made me a genius and at other times a lunatic and a isolationist I've been told by a therapist I have lived like this for so long that it would take years and years of therapy and dollars to correct this with no guarantee . I have lived this long so I just learned to work around it and have been successful some of the times .adunn1230@hotmail.com

I had a brain tumor in 1975 ,and a stroke in 2013 . I knew I was different from most people growing up, I just didn't know why. Now I know it is a brain injury everything makes a little more sense now . I now know a lot of things in the past are not my fault it makes me feel better knowing it has a name. I just wish people would realize that we are not so called normal.

After reading so many comments about frustration and attempted suicides. I feel like a part of this family here where we are all fighting to just exist and gee wouldn't it be great if someone understood. To my brothers and sisters out there. I have been fighting for 2 yrs and 5 mos after my second TBI which was a left brain stroke July 2012. I had an AVM bleed in '88. I'm actually grateful for short term memory loss. Doesn't give me a chance to feel sorry for myself. I wont give up, but oh how many times things just suck. I'm numb on my right side but force my body to work. I actually forced my vocal chords to work and play and sang on my guitar at church. Sometimes I just can't do it. I live alone so I just try to keep myself busy. I wish everyone here love and hope! 

Letting me tell a story over and over again and pretending it's the first time they heard it! Thanks mom!!!

Loving me even when I feel unworthy. Listening when I try to explain how I feel. Being patient during conversations when I can't think of words or remember what I was trying to say. Being encouraging, but knowing when to back off. Picking up the slack on days I'm dragging.... Brittany

just held me tight while I broke down, and cried with me.  no advice, no telling me that I am wrong. just holding me and getting it.

It has been me, learning to take responsibility for my own life.

Let me be me and believing me in our conversations without questioning my new abilities of experiencing life in full now.

That my lovely wonderful sweet hottie sweetie girt friend who is my wife stuck with me through it all and still loves on me like we are newlyweds.

Always say I LOVE YOU before leaving a family member and friend or just any loved one

Speaking quietly to me even when I get so confused and frustrated. Royace

Let me be who I am.  Accept me.  Love me when I am unlovable. Didn't run away or leave my life. 

Lillian K

Except me for who I am now

For being patient with my out bursts and moods. I cant help the way i am, my partner has the patience of a saint. Xx

Involved me in social settings.

I went 8 years before being diagnosed. In that time I attempted suicide twice, almost divorced, tried to do things I didn't do as a teenager.

Since being diagnosed absolutely no one in my family believes all the side effects it continues to have in my life. I was just sat down with hubby and daughter and was told "I don't have to be so negative all the time". Really? they don't even acknowledge the fact that there's anything wrong with me. The most helpful thing would to have someone to come along side me and say "it's okay to feel this way" instead I'm bombarded by how I should be since it's been so long, and I should be better by now anyways. I live in Mich. and the area I'm in no doctor is willing to diagnose because of insurance purposes. I haven't worked in a decent job since I had to stop doing daycare (it didn't bring in enough money). I'm just ready to give up all together at this point.

My true friends love me unconditionally what s blessing

Accept I'm different now and quit avoiding me and judging me. I do the best I can do 24/7.

Family and friends that keep trying to learn and understand, listen to me, love me, because of or in spite of changes in me.

don't medicate me, I had to be over medicated and got off that cr*p before I committed suicide, let me be me

My woman luEllen loving me despite the mood swings and frustration, self loathing, forgetfulness, depression and the fact that I can become a stark raving lunatic like flipping a light switch. I love her so much

Don't stop asking me to go shopping with you, just because I have difficulty at times with noise and I'm a bit slower, I think family and friends think it's quicker without me and that hurts

Supported me unconditionally without me asking and killed me with kindness. 

I had a TBI due to a right frontal lobe intracranial abscess  September 2012.  I had the abscess drained, but it filled again, and developed an offspring. I had a second surgery to remove the abscess , and was treated for several weeks with  iv antibiotics. I presented as a full blown stroke, but quickly got full use of my left side with the help of aggressive physical therapy. You would never know I had ever had a problem. What doesn't show are the affects left on the inside. I have severe memory loss. I had to check in my medical files to find the year I had my TBI. I thought I was heading into my 3rd year. Timelines are a nightmare. I have such a problem trying to figure out when things happened, and I don't want to ask my husband anymore as he looses patience with me. In the last few months I have greatly diminished sense of smell and taste. I can taste the first couple of bites of things, but I  am not sure if this us just due to my memory of what they tasted like. I loose words! I will be talking and want to say a word, but can't remember it. I will describe the word to someone,and by the time they have given me the word,I have forgotten what I was talking about. I cry every day. I am so frightened that I will get worse, especially when my sense of smell and taste did not change until a year after my TBI. What else may be affected.. I want to lay down every day in the late afternoon,and could stay in bed for  the night, I don't sleep in that time in the afternoon,but often I do not sleep throughout  the night.  I used to enjoy going out for a few drinks with my husband and friends, but now all I want to do is go out to dinner,and come straight home. I used to ride my bicycle 15 miles a day and then workout for an hour. I have no urge to do either. I know I will never have the old me back, but how can I explain this to my husband! He us growing short on patience
Apr 17h, 2014 11:24am

I'd love to say something nice that someone has done for me since my brain injury, but it seems like I keep losing friends and family seems to be getting annoyed with me. No matter how many times or ways, I try to explain stuff, no one seems to understand. I feel completely lost, helpless, and worthless. For all of you that have someone there for you and they're are at least trying to understand, please do me a favor and tell them that I think they are truly awesome. Best of luck to all of you. If anyone wants to talk to me, just google F'N Mental and you'll find me. Hope you all have a great day and I'm going to try and find my happiness for the day somewhere.

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