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 (118)

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.

My family has been so supportive. They have cried with me & prayed with me when all hope was lost. I thank God for everything.

God is the most important source of hope. He will give you the peace you need and He loves you like no human is capable of. Seek his care.

I'd like to add to the things not to say list. Don't tell me ,it okay I forget things too...it's our age.

TBI and Partial Complex Seizures are HELL! I would not wish them on my worst enemy. I have global damage and brain stem damage. My tbi was 29 years ago. My husband died 5 years ago and I am alone. I have many damaging diseases, causing a lot of pain, requiring surgery and long term care. All caused by the tbi. Life sucks.

Fed me ice chips when I woke up from surgery and my body was coming down off the anesthesia.

I love you but please stop trying to help.

"Forgetting" how to express my feelings to people is the hardest task I've endured, by far.

I love when people tell me their name & how we met. Even though it might be the 10th time we’ve met & I still don’t remember them. That’s very kind!! ❤️

Sometimes I feel Post Traumatic Stress symptoms, and it's helpful when someone just gives you validation as to what you went through.

Having a friend allow me to cry and vent to them when I can no longer control some things in my life

Ot feels like..the lights are on but no one is home sometimes.. in the mirror i look the same but dont remember who i used to be ..my personality of who i used to be is gone and disappeted.. annette

My friend sent me a list of healthy foods that are recommended for helping the body to heal concussion

Do all those people who made comments has been most helpful to me to understand what I am feeling it’s not individual to me but others have experienced it too

Patience has been key to my recovery...

Finally hearing someone say, they believed me.

Yes, they believe us. What a big gift that we seldom get & DESPERATELY need. The world can be incredibly hard in the best of times. Having TBI makes it SO much harder that even good people don't seem to have any idea of the reality.

How wonderful that must have been . I notice that many people disbelieve someone with TBI just because they seem to like to hurt a vulnerable person.

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

It is really difficult when you have no one to help you, I totally understand as I have no one either. The sad part is I live with my husband and 2 adult children and all they do is abuse and berate me. I don't know what to do.

I have had many terrible brain injuries in my life starting at a young age and know the trouble, confusion, depression, wondering if you will ever feel like "you" again, difficulty completing small tasks or figuring out simple things that you might feel. Know that even really bad brain injuries get better, one took me 2 years to feel "normal". I just had another a few days ago and was mocked by a close friend, as if i was faking it for sympathy. As this is not new to me, i immediately told him i don't feel well and to stop or i would get very angry very quickly. he then seemed to understand a bit more that I was not faking it for sympathy, as it is out of character for me to be extremely harsh, and normally have a happy demeanor. i hate that you are being treated poorly by those who should be supporting and understanding of you. your situation is real, and whoever you are, from one stranger to another, i accept you, and i hope you make your family read the information on here about what to say and not say to a person with a brain injury. it WILL get better, it WILL get easier, you WILL feel significantly better with time. Remind yourself that it is simply a resting and waiting game. ALSO caffeine helps A LOT with symptoms, I'm no doctor, but I've had a lot of concussions and find it to be the only thing that helps me besides lots of sleep, no reading, no deep thinking, rest your mind as much as you are able to. when doing nothing try to think nothing and do nothing and it seems to speed the process of healing for me. HOPE

Thank you my son was in in a car accident 5/15/2021 and was diagnosed with a TBI. He is recovering well, but I am always looking for helpful ways to show my love and support.

Best Regards.
Ranae

Thank you, my husband has a TBI and I’m trying to learn as much as possible to be the best supporting wife I can be. In both his good and bad days and not be a mother hen. It’s totally out of love. I’m a bit lost in it but trial by error. Again thank you

My husband was frankly a person with a slit personality before his stroke and after except for a few times his bad side comes out for yrs I have hoped he would recover and he would be as he was but other times I know this is for the best for him he would go back to drugs and illegal things and end up a 3 or 4 the time in jail now and then I see his some what recovery but to a domonet bad side and not only has his good side left but he is in full rage I know not all are like him but this rebirth has been a god sake to him there is peace in his heart for now but when the day comes his evil side takes over I will step aside and let him face what comes next he is not normal nor greartfull

You are doing a great job to educate yourself.
Life is not easy living with some one who has had multiple concussion but one thing means a lot and that is to know WHY they act and feel like they do.

In the end, we all have to help ourselves by continuing trying to learn again what we have lost.

Nobody can really help us.

The only one who helped me was the doctor who had me have an MRI scan which clearly showed and proved the problem I have.

Having formal proof of TBI is essential to start the process of adaptation and just continue to live.

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.

I am 68. I suffered my first Brain Injury when I was 52. It was a subarachnoid hemorraghe, It required a drill in the skull and a tube inserted thru the hole into the brain to the ventricule area. Comatose for 5 days. Woke up with tubes in places that
never had holes in them before. Three days later any light or sound produced awful
headaches. The hole in the head was infecting me with bacterial meningitis. This caused another hole and insertion of a tube thru the brain. Then 3 years ago, I fell
off my 10 foot ladder, because I do not have good balance. Fractured my skull and
got another bleed in the brain.
I suffer from brain fog, dizziness, headache, left hand and left side of my mouth not
working like they should. The good news is now everyday is a bonus day and a gift
that I thank GOD for. My suggestions are what worked for me, are finding doctors
and medications that work. And most importantly, psychological counseling.
Positive Cognitive Behavior Therapy

This is a Job for... Super Doctor! Sounds like you need a consulation with a naturopathic Medical Doctor [nMD]/ Naturopathic Physician [ND]. I'm a Naturopathic Physcian [ND], we prescribe naturopathic medications [specially prepared medications, based on serial dilutions]. And I am a Brain Injury Surviver [2010 hemorrhagic brain bleed].

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.

I feel so lonely. I worry about when I can work again , I get terrible anxiety and depression. Feel worthless . My short term memory is terrible but what makes it worse is people make jokes about it .I'm left with a stutter when I get anxious angry upset it's hard for me to control it I've lost friends been ignored in the street you people I worked with from the gym turn their heads so they don't have to speak

You just said what I'm going through right this moment.

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!

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