10 small things you can do to help someone with a brain injury

helping someone

Five years ago I had no idea what a brain injury was, let alone how to help someone with a brain injury. I discovered that a lot of people don’t know what it means to live with a brain injury or how they can help.

Nowadays, people regularly tell me to let them know if they can help me with anything. I never know how to respond to this offer. Were they just being polite or did they mean it? What can or can’t I ask of someone? When does my request turns into a burden? What kind of help do I want?

However, the truth of the matter is that people definitely can help. Especially in social settings. By trial and error I’ve learned a couple of things that help me. Thus I thought it would be a good idea to put them into a list. A list of ten things with which my close friends and family members help me most often. Whenever someone offers to help me in the future, I’ll just point them to this list and let them pick and choose.

I hope this list can also help or inspire you in some way. A small disclaimer though, every brain injury is unique. I can only speak from my experience, but what works for me doesn’t have to work for others.  If you have any additions to this list please let me know! I can always write a later update.

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10 tips to help someone with a brain injury

  1. Get in touch
    If I don’t do something straight away and or write it down, I’ll likely forget doing it at all. I’ll just get distracted by everyday things and forget to get in touch or to plan a get together. So get in touch with us* if you haven’t heard from us in a while.
    * I kept struggling with I vs. we vs. you, so whenever I use ‘we’ or ‘us’ in this list, I mean we who have a brain injury.
  1. Bringing food
    The act of cooking or doing groceries are both exhausting. It therefore can really help if you can pick up some groceries or maybe even bring over that’s already prepared.
  1. No background music
    I used to love to have some music playing in the background. Not any more though, as I can’t tune it out. This means that it takes a lot of attention and energy if I also have to try and stay focused on the conversation. It helps a lot if you have no music (or clocks that tick loudly) playing.
  1. Providing a quiet place
    After forty-five minutes of talking I need to take a small break. To be one my own for ten minutes to process all the information and give my brain a chance to catch up. If you can point us to a certain room or place where we can retreat to so we can give our brain a break.
  1. Choosing where to sit
    If we’re going somewhere, I’m mainly paying attention to all the things I’d like to avoid. Things like speakers, harsh lighting, striped wallpaper, small children and large groups. Just about everything that provides a ton of auditory or visual stimuli. So if you can let us decide where we’d like to sit, we can stay out longer.
  1. Decide when to leave
    I love meeting with people and like to do that as long as possible. I’d only notice afterwards how far I’ve exceeded my limits. Rather than waiting for us to tell you to go, it therefore helps if you leave the moment you notice that we’re getting tired.
  1. Ask how today is
    People always ask how you are doing and I never know how to respond. It’s one of those open ended question where I never know what they want to know exactly and how I should respond. So ask how today is going. This is a much more defined questions, which is easier to answer.
  1. Don’t make it too complicated
    Don’t use too much imagery or abstract thinking. Whenever this happens I will be so busy ‘translating’ whatever you’re trying to say, that I lose the tread of the conversation. So keep it simple.
  1. See the progress
    It’s easier for me to compare my life ‘before brain injury’ with life ‘after brain injury’. Which isn’t helpful at all. If you see improvement compared to the last time you saw us, please let us know! It helps being made aware of the progress we have made.
  1. Be patient
    Sometime we have trouble articulating. Either with putting our thoughts into words or finding a specific word. In that case, please be patient and wait for our brains to catch up. Eventually we will manage. If we suddenly start to cry or get angry, please don’t take it personally and try to stay patient. That’s a sure sign that we’ve reached our limits and need to sleep.

I hope this can help you as well. And to my dear friends and family, thank you for doing your best to accommodate the new me.

Do you use some of these or do you struggle with other things? If you have any additions to this list please let me know!

41 Replies to “10 small things you can do to help someone with a brain injury”

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  9. I am 3 months post brain surgery from a benign tumor. The biggest thing I would say is for others to realize that just because the scar has healed doesn’t mean I have. When they say ‘you look great’ it’s is hard to say anything but ‘thank you’ and smile at them, when I sometimes want to say ‘I wish I felt as good as I look!’ It’s similar to ‘how’s it going’ but a subtle difference. Thanks for writing this!

  10. Oh my gosh, this is so very true! I’m week 3 post brain surgery and am realising that my expectations of my recovery are not realistic. This is a great help for me and my family and friends; thank you!

      1. It’s a pretty good list and spot on for the most part about me. But how do you make sure they don’t feel bad? I live with my family and they remember the “before” me and have had to deal with the “now” me for nearly 20 years. We didn’t do the therapy suggested because I thought that I would get better but I didn’t. So what do we do now? What do I do now? How can I help me and make it easier for them? Better for them?

        1. Apologies for the late reply! I can only speak for myself, as I have neither the credentials nor knowledge of your situation, but hopefully it can inspire some thoughts for you. I learned that talking openly and trying to explain why you feel a certain way, in a safe location, helps. For me I like to have one on one conversions, as it helps me to focus and make sure they understand me correctly. Maybe therapy might still be an option for your, if you think that having a neutral person there would help you. I wish you all the best!

  11. Thank you so much for this. It will be a great help with my husband who suffered a stroke last February.

    1. Thank you for letting me know and I wish you and your husband all the best in finding a way forward in this new normal.

  12. I’ve struggled with a lot of these issues for years but was too embarrassed or just not sure how to handle it. Thanks!!

  13. You have added valuable information to my repertoire of information I share with others. My wife passed away September 26,2017 after battling dementia for only God really knows how long! I have worked with young people in the classroom for 36 privileged years ( K – 12 ). I have become the strongest, well-educated male advocate in this country to rid/ prevent dementias ( more than 100 types ). I have 134 contacts in fourteen states (at the present time) receiving information relating to dementia in all of its forms and I’m focusing on NUTRITION AS A METHOD FOR THE PREVENTION OF THIS DISEASE! Not on your list was the Disney Junior TV channel. For my wife, this was a blessing almost to the end of our journey- big time! Bright, colorful, distinct sounding characters kept her attention constantly. Music and reading to her no longer did the job! I am still involved with the residents in the facility Marion was in. I would like to send you our story UNSUSPECTING which I wrote at the request of Senator Stabenow two years ago. I also wrote THE ROSE OF MY LIFE in case something happened to yours truly first. To be read by the executer of our Estate at her services. Yes, I believe in God and his winks! For us, I tell people, he has a sore eye from all of the ways ( winks ) he helped the both of us through this very, long, long journey.

  14. A very helpful list, i have printed it and will be adding this to my daily list of reads and things to share. I hope your day is going well. It has been close to nine months since my TBI and I can relate to all 10. Thanks for sharing.

    1. Thank you so much! My day is starting with a tea on the sunshine, so that looks very promising. 🙂

      I wish you all the best in finding your way in this new normal. Take care and thank you for reaching out!!

  15. Thank you for this list, I am seven months into my tbi and this list will help me direct people to learn more about where I am in my recovery.

    1. I’m happy you found it useful! I’m sorry that you also have to deal with a TBI. Take care and I wish you all the best in adjusting to this new life.

      1. I like your comment on “your new life”. I struggle with comparing before and after. This is a new life and journey.

  16. This list is great! But as you said every injury is different. I prefer to do things on my own unless I have no clue what to do, that’s how I’ve always been. And sense my injury I contradict myself all the time.

    1. Thanks! And thank your for sharing your experience! That must make life a bit more challenging, the contradicting yourself.
      Take care and all the best for the new year!

  17. Hi, I can relate to so many of these points..I have found this very useful. Can I post on my facebook page to make others aware please? Thanks

  18. thank you for this post! now I’m going to send it to some people! i hate it when people ask how my weekend was … i have no idea. i rarely remember anything beyond that morning. i really do live in the moment ….

    1. Glad it could be of use. I hope it works and that they’ll help you!
      Thanks for the feedback.
      Take care!

  19. I particularly liked ‘Ask how today is’. After my TBI the guy who caused it used to call me quite regularly & ask ‘how are you?’ (He was Swiss so his command of English wasn’t so great which didn’t help.)
    There was no answer I could really give; it was early days & I had no idea how bad I was or that i wouldn’t rediscover the old me. I felt bad too, it was ‘just’ an accident. Didn’t want to really describe how lost I was.
    This is all useful writing 😊 Can I share with my Facebook group please?

    1. Hi Jo,
      That must have been quite hard, especially in the beginning and on top of that having to deal with a translation issue!
      Yes, feel free to share it! Thanks for asking 🙂
      Take care!

      1. Excellent post, very helpful information, this would be great to give friends and family after my tumour surgery. I struggle with ‘sensory flooding’ as you described, add to that, tv screens, candles flickering, bright lights, chairs scraping the floor, loud conversation and I soon can’t process all the sensory information, panic sets in and I have to get out. Effects my speech and mobility too which frightens me.
        I too thought ask ‘how today is’ is great, only a short response is needed, I can tend to ramble on, about how I am now and how I was before the brain surgery when asked ‘ how are doing?’.
        Thanks for theses 10 points.

        1. Thank you! Yes, that sensory flooding leads to a whole cascade of challenges and problems. It must be really hard when your body’s reaction frightens you. I hope you can figure out the warning signals, in order to try to avoid a full sensory overload from happening too often. (I’m still working on this one, in my experience these warning signals also have some variability.)

          I’m very glad that you found these point helpful! Thanks for letting met know. 🙂
          Take care!

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