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Brain injury blog by survivor

Brain injury blog by survivor



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Brain injury blog by survivor

Brain injury blog by survivor



As someone who took care of her father as Alzheimer’s took away the person he was, I have always felt great empathy for family and friends of a brain injury survivor. I know it’s not easy and can even be heartbreaking. However, I have seen a lot of comments from various people asking for ideas on how to reduce the number of outbursts from the survivor in their life. This then prompts people to start talking about what drugs to try them on, which I disagree with as only their doctors who know their medical history should be commenting on this otherwise it can be dangerous. They will help identify what is causing the outbursts after a brain injury, as this could be physical pain, an infection or mental health issues like depression. My dad struggled a lot with this, getting angry with his carers, and his doctor and I had a good chat about it. As he was still mourning the death of my mum, and the upheaval in how much his life was changing, we agreed he was suffering from depression. It did help him get control of his reactions, but as all drugs have side effects it was important to talk this decision through with someone who could review all his other medications as well. Instead I thought I would try to help people understand what is happening on a very basic and relatable level which could help it feel more manageable. 

“Like a Bear with a sore head.”

We’ve all heard this expression and many of us use it when referring to someone who seems angry and/or grumpy. But have you ever really thought about what you’re actually describing? An injured animal who can’t explain to you how they feel, but their pain as making them more aggressive because they are feeling more vulnerable than normal. Or how about when you take your injured pet to the vet? My cat Dexter loves people, and is the most laid back creature you’ll ever meet. But there was one time he had a cat bite on his head that got infected. It was very uncomfortable for him and the vet flushed it through with saline to clean it and injected him with antibiotics. Well he bit the vet has hard as he could and was using very colourful language at her. She was doing what had to be done to help him and yet he had this outburst at her. Does that make him ungrateful? No, it makes him scared, confused and in pain. 

Don’t assume they are seeing the situation the same way you are.

It’s very easy for a brain injury survivor to become overwhelmed with what’s happening around them. Even just bright lights, too much noise or crowds of people can over stimulate them. It might seem calm enough to you, but it can feel chaotic to them. Again, think about when you are transporting your pet to the vet; you often can help calm them by covering their pet carrier in cloth to cut down the light. It’s not that they’re stupid and as long as they can’t see anything they become calm, it’s because you’re reducing the visual stimuli. The more an individual becomes overwhelmed the more defensive they become because they just want something to stop.

Now, if you’re thinking “I get that Michelle, but I expect a cat to act like that because it can’t say what it feels and I can’t explain what is happening. But I have explained to my survivor what’s happening and it’s nothing to worry about and yet they still bite my head off”, you need to accept that a brain injury can interrupt that communication process. Even if they seem to have understood you, or you think you understand what they are experiencing, be open to the fact that it’s not always as black and white as that.

Allow the situation to diffuse.

Once someone has become upset, scared, overwhelmed or paranoid, the best thing is to allow them to calm down. That could be reducing the noise, distracting them with an activity they enjoy or just leaving the room. When I’m getting wound up James makes me a cup of tea and gives me the cat. These 2 things always calm me down. I might then be very quiet whilst I reflect on what got me so uptight, but that’s a good thing. I often find that the following day I can talk about what got me into that state properly. James’ patience is key here. With his  kind smiling eyes I can see he wants the best for me and he gently asks if I’m feeling any better but doesn’t go into an interrogation. By giving me the space I need I’m able to find the words in my own time to describe what happened. Plus, I reflect on my behaviour and can start to appreciate what my triggers where. This is really important as we can both learn what to do differently in the future to be able to intervene before it gets so bad. If you struggle to work out why it’s happening, together you could keep a diary so you can look for any patterns in their triggers.

If it’s a particular task that they are reacting to, consider if it has to be done right now.

There were times that my dad just didn’t want to get out of his PJ’s. I don’t blame him, we’ve all had days like that! But imagine what it’s like to have someone trying to force you to get dressed when you just don’t want to. When you’re a kid you have to accept that your parents are in charge and when they say “get dressed”, you get dressed. But when you’re an adult you’re used to making your own decisions. You don’t want to be bossed around and then it can make you defensive. So unless dad had to get dressed to go to an appointment, he was allowed to stay in his PJ’s until he wanted to get changed. That might be an hour later, or it might not be at all that day, but as it wasn’t doing him or anyone else any harm, it didn’t matter.

I know it can feel like you’re stuck between a rock and a hard place seeing as you’re only trying to help yet sometimes it can feel like you can’t get anything right. Believe me, I’ve been there…. on both sides. So that’s why I want to break it down into 5 steps for you to be able to make things more comfortable for you and the brain injury survivor going forward. 

5 steps for managing outbursts.

  1. Identify what the problem is – Is their environment comfortable? Are they reacting to someone else’s attitude? Are they in pain?
  2. Examine the situation – Does it always occur in the same place or with particular people? Keep a diary to be able to track patterns.
  3. How is the survivor feeling when the outburst happens? – Do they feel patronised or ignored? Is something making them anxious? Are they becoming overwhelmed and tired or are they feeling misunderstood and frustrated?
  4. What are they reacting to? – Are the struggling to cope with a change? Are they having an unpleasant memory or is someone’s personality provoking them?
  5. Make a strategy – Look back at your tracking notes so you can avoid situations which cause the outbursts. Remember that a method that works well one day might not be the right one next time. You need to develop a few different methods, because we are humans not robots. Make sure you are working with them, not against them.

Are you a brain injury survivor who feels no one understands your outbursts? Or are you a family/friend who has got tips that can help others?


16 replies on “Why outbursts after a brain injury happen”

Very often it’s damage to the frontal lobe and limbic system that inhibits the survivors ability to control and moderate their emotions. All the points you mentioned are valid Michele. However, very often only strategies over time help keep extreme emotions in check. CBT / counselling along with the in put of an brain injury informed psychiatrist are what saved me from being the monster I’ve worked my life not to be. Get a good psychologist and psychiatrist along with the support from a brain injury association or support group and your in with half a chance.

Excellent Michelle, think this is very help and a good start for those who are trying ‘to fix’ you, at times I don’t know what’s going with my reactions to situations, so how can my family work it out either? Your 5 steps are helpful. For me it was getting professional help from a neuropsychologist that helped me to use strategies to calm my anxiety and panic in situations, even 4 years later, I am still learning to cope with this complicated brain injury. My neuropsychologist brings a different perspective, he’s studied my illness and has a different approach, not ‘fixing’ me, more of myself understanding and working around this new brain. My family can’t be my therapist.
It would have been so much more helpful, had my family and friends had this blog to read. Especially in the early days.
Once again thank you.

Thanks Jo. I hope it helps particularly when people are still waiting to see the experts.

I sustained my head injuries long time ago…No proper assistance from anywhere. Doctors fumbled through their ignorance of head injury and no proper assistance given…UNTIL…I entered the Rusk Institute in Manhattan. Able to attend it and develop compensation strategies for all the symptoms which I was slowly introduced to by cognitive remediation treatments. The only thing I need to do and have done is to present my cognitive remediation poster…(that I had in my classes)…which no one has yet been able to understand how that combination of injuries causes me my effects. If you think, as a friend may, or wife may, or anyone close to the patient think that they can cause changes (?)…’You can only cause a change if you are able to understand the whole injury’…The whole injury cannot be understood until the person is ‘grilled’ with insight about himself, which only he can give through remediation. Such treatment does exist and is given in the Rusk Institute. If you think you know something better…you probably don’t unless you see the cognitive remediation classes followed in the Rusk and the diversity of head injuries noticed of all the patients that are part of cognitive remediation…The treatments in the Rusk of cognitive remediation, and the DVE. Diagnostic Vocational Evaluation, and the WPAT. Work and Personal Adjustment Treatment…(a regular work office usually there in the Rusk itself)…where the patient now having understood the full extent of his injuries will work and in an outside cognitive class, designed for this, will be able to see how well his disabilities effect his work schedule. This is the last part when he is given advice as to how to proceed with his life. If a person becomes ‘angry’ post head injury he needs to go through the process, and be able to understand the ‘full’ extents of his injuries, and see if after having understood the full extent of his injuries, he would be able to ‘productively’ work…I WASN’T…but I have not met too many people who have gone through that process…John…aka. Nino

Hi John, I’m so pleased for you that you were able to access such effective support. Unfortunately many brain injury survivors get very little, so it’s nice to hear from someone who felt they have received what they need.

Watching myself as an outsider and seeing the emotional and behavioral issues that I now have, but can’t yet control, is extremely difficult. Causing pain or challenges to others for things that I don’t always have the ability manage any longer is heartbreaking. It’s difficult to relearn my new self and the changes enough to always communicate feelings.

Thank you for your empathy, words, and understanding of father’s changes. Your strategies are right on and I hope to share them with others so that they can better understand what those that have brain changes are going through.

I do hope people can better appreciate what is happening when a survivor has an outburst and that this will help lower the stress for all those involve.

I’m a 4 time TBI survivor. This happen in 3 different accidents since I was 20. The 1st 2 accidents, I thankfully pulled through, but the last head on accident I occurred 2 TBI’s in that same wreck hitting frontal lobe and the back lobe which led to ER brain surgery, then I turning into a 4 year old toddler who talked and thought like a baby. I couldn’t even remember how to use a microwave, mind you I was 38 years old at the time. I Spend 8-1/2 years in bed, and no one would help me because I didn’t have medical insurance in the beginning.
So I learned to lean on the Lord, He was all I had. And slowly He taught me. It’s amazing how He taught me.
And my healing has been gradual in process.
It’s been 11 years and I still can’t be around a bunch of people. I also got hyperacusis in that accident where I’m super sensitive to sounds so I have to wear musician ear plugs 25R filters to block the noise when I’m around people or leave my house which is not much.
I’m still sensitive to lights so I keep them down, and must wear sunglasses out.
Everyone’s experience is different and only you can figure out what works for you. I wish there was a 1-10 step but it’s not.
What is real, is what you’ve learned; how to do the new you. I’m still learning and praying for Gods help every moment of the day. It’s not easy. Life is hard for us and because people can’t see the damage or hurt they don’t understand. So I’ve learned to forgive them cause that’s the case.
Now if we had a big bandaids on our head, maybe then they wonder lol. I’m just making a joke.
Everything in life hits us deeper and hard. We get over stimulated too easily. If I see something with too much going on I get overwhelmed. The grocery store hits me like that. All the labels and etc. too much information for the brain to handle.
So I’ve learned what I can do and what I can not do. It’s a small list but I’m ok with it. I made peace with it a while ago.
The hardest part for me in the beginning was the person I was died and now I’m in this broken machine that doesn’t work. I’m still inside it, yelling, hey here I am, I can see you and I want to say something to you but I can’t get the words out!
Can anyone relate?
So I’ve learned to journal everything. I have to because I forget. I forget shows I’ve watched and etc. so I write down everything. I have different calendars on my wall for different things, 1 for my medication, I have it prewritten on the calendar and when I take it, I circle it so I know it’s done. Another for household chores, another for my beauty treatments, hair color (I do it all myself. Self sufficient, plus it’s what I can afford. )

I would never wish this on anyone. But I know and trust with all my heart Jesus is with me. I could of never made it this far without Him.
I know we all have stories. Just thought I’d share mine. There’s more of us survivors out there than we relies.
God bless you all, trust Him, He wants to help us more than we realize!

Overstimulation is a real problem for me too, so I totally relate. I am do supermarket shopping, but only if I’m on my own. If I go with my partner I can’t cope with not being in 100% of control over time and location: If he wants to look at something which isn’t of interest to me, that moment of waiting gives me brain too much time to think about other shoppers and how they are unintentionally stressing me out.

I totally understand. I do best on my own, to go at my speed and pace. We don’t need any other stress on us, because we are using all our energy just to be there to get the task done. No one understands how hard everyday life is for us. So I’ve learned to live just in today or just in this hour, so I don’t stress myself out. Thanks for the blog love! It’s hard for us, but glad to know I’m not a Lone Ranger on this journey! God bless you! Keep up the good work!

Oh the outburst thing!
Sorry I forgot to mention that.
It happens to us when we get over stimulated by the wrong source.
Or we get pressured to do something that we know we don’t want to do.
And I must say; we do know what is right and what is wrong, so we know what’s going on. We aren’t stupid, we are just in a broken machine.
It’s either the other person’s negative energy that makes us explode or they are pressuring us.
That has been my experience.

And I have no control over it, once they have pushed me over the line. BAM I blow!
Period. No filters, there gone, all I got if God intervenes and helps me.

Now, Ive learned to keep my life very simple and balanced so I try not to have these problems.
I keep very few people in my life. I can’t handle people. One on one in conversation and a little time is all I can handle. That’s healthy for my life.

If I go to a family function, I am sitting outside alone away from it all because it’s too much. Too much noise, people and etc.
I’m happily alone, but I’m not really alone cause Gods with me.

BTW, I’ve seen counselors and everyone I met told me I’m doing great and I should be the 1 talking to people. And I look at them crossed eyed and walk out the door. Then I laugh and say God thank You for being with me. Cause honestly folks, you know as well as I do how hard this life really is.
What’s that old saying…. Until you walk a mile in someone else’s shoes, you’ll never understand.

Much love to you all!
Please Know that your not alone!
There are many of us who survived TBI’s, PTSD and all that.
There is light at the end of your tunnel, you just have to find what works for you. Have your boundaries, protect yourself, and it’s ok to say No to whatever you don’t feel is right for you.
And with anger, pray ask God to help you. He’s always helped me with everything. And some prayers were answered in time as I learned from Him what to do. He hears the 1st prayer, and now He’s working with you to teach you how to overcome and deal with that situation. It’s a learning process. Takes notes, journal, write the date and time you prayed, write your prayer down.
And as you journal your days, you’ll go back over your notes and realize Wow look this prayer got answered and you’ll see the way He taught you. He’s a Supernatural God!
This is a journey we are on but we are not alone! We have a Heavenly Abba Father who delights in us, even when we are broken. He looks and says, hey now they are ready. The Master Potter God will help mold us, change us, and teach us through this trail. I reckon we are picking up our cross and following Him in this place. So it’s a good thing. I know many days it’s doesn’t feel like it, but we got to lift up our heads and look up to Him! Our help comes from Him!
I pray this encourages you, and gives you a great hope! I do with all my heart because I’ve walked a mile or 2 in your shoes!
Much love to you! God bless you all!

It’s good that you are comfortable in your own company and know what is good for you. I think many of us struggle in group situations and can understand your need to keep it to one person at a time.

Thank you! It’s taken me years to learn this, and it has not been a easy path.
This has been the hardest thing I’ve ever been through and I’m still going through it.
I suppose in the degree of TBI I suffered this last 1 was a severe brain injury.
My first 2 TBI’s where minimum but still TBI, but that last one, changed me completely.
It’s just a hard life to live truth be told.

Thank you! This helped me, I had a hemorrhagic stroke & have brain damage & have the same symptoms. I pray also to get through this. He is the only way to cope with life after brain injury.

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