Initiation, Planning, Organization, and Brain Injury

The University of Washington TBI Model System and the University of Washington Medical Center
Initiation, Planning, Organization, and Brain Injury

Brain injury is confusing to people who don’t have one. It’s natural to want to say something, to voice an opinion or offer advice, even when we don’t understand.

And when you care for a loved one with a brain injury, it’s easy to get burnt out and say things out of frustration.

Here are a few th ings you might find yourself saying that are probably not helpful:

1. You seem fine to me.

The invisible signs of a brain injury — memory and concentration problems, fatigue, insomnia, chronic pain, depression, or anxiety — these are sometimes more difficult to live with than visible disabilities. Research shows that having just a scar on the head can help a person with a brain injury feel validated and better understood. Your loved one may look normal, but shrugging off the invisible signs of brain injury is belittling. Consider this: a memory problem can be much more disabling than a limp.

2. Maybe you’re just not trying hard enough (you’re lazy).

Lazy is not the same as apathy (lack of interest, motivation, or emotion). Apathy is a disorder and common after a brain injury. Apathy can often get in the way of rehabilitation and recovery, so it’s important to recognize and treat it. Certain prescription drugs have been shown to reduce apathy. Setting very specific goals might also help.

Do beware of problems that mimic apathy. Depression, fatigue, and chronic pain are common after a brain injury, and can look like (or be combined with) apathy. Side effects of some prescription drugs can also look like apathy. Try to discover the root of the problem, so that you can help advocate for proper treatment.

3. You’re such a grump!

Irritability is one of the most common signs of a brain injury. Irritability could be the direct result of the brain injury, or a side effect of depression, anxiety, chronic pain, sleep disorders, or fatigue. Think of it as a biological grumpiness — it’s not as if your loved one can get some air and come back in a better mood. It can come and go without reason.

It’s hard to live with someone who is grumpy, moody, or angry all the time. Certain prescription drugs, supplements, changes in diet, or therapy that focuses on adjustment and coping skills can all help to reduce irritability.

4. How many times do I have to tell you?

It’s frustrating to repeat yourself over and over, but almost everyone who has a brain injury will experience some memory problems. Instead of pointing out a deficit, try finding a solution. Make the task easier. Create a routine. Install a memo board in the kitchen. Also, remember that language isn’t always verbal. “I’ve already told you this” comes through loud and clear just by facial expression.

5. Do you have any idea how much I do for you?

Your loved one probably knows how much you do, and feels incredibly guilty about it. It’s also possible that your loved one has no clue, and may never understand. This can be due to problems with awareness, memory, or apathy — all of which can be a direct result of a brain injury. You do need to unload your burden on someone, just let that someone be a good friend or a counselor.

6. Your problem is all the medications you take.

Prescription drugs can cause all kinds of side effects such as sluggishness, insomnia, memory problems, mania, sexual dysfunction, or weight gain — just to name a few. Someone with a brain injury is especially sensitive to these effects. But, if you blame everything on the effects of drugs, two things could happen. One, you might be encouraging your loved one to stop taking an important drug prematurely. Two, you might be overlooking a genuine sign of brain injury.

It’s a good idea to regularly review prescription drugs with a doctor. Don’t be afraid to ask about alternatives that might reduce side effects. At some point in recovery, it might very well be the right time to taper off a drug. But, you won’t know this without regular follow-up.

7. Let me do that for you.

Independence and control are two of the most important things lost after a brain injury. Yes, it may be easier to do things for your loved one. Yes, it may be less frustrating. But, encouraging your loved one to do things on their own will help promote self-esteem, confidence, and quality of living. It can also help the brain recover faster.

Do make sure that the task isn’t one that might put your loved one at genuine risk — such as driving too soon or managing medication when there are significant memory problems.

8. Try to think positively.

That’s easier said than done for many people, and even harder for someone with a brain injury. Repetitive negative thinking is called rumination, and it can be common after a brain injury. Rumination is usually related to depression or anxiety, and so treating those problems may help break the negative thinking cycle.

Furthermore, if you tell someone to stop thinking about a certain negative thought, that thought will just be pushed further towards the front of the mind (literally, to the prefrontal cortex). Instead, find a task that is especially enjoyable for your loved one. It will help to distract from negative thinking, and release chemicals that promote more positive thoughts.

9. You’re lucky to be alive.

This sounds like positive thinking, looking on the bright side of things. But be careful. A person with a brain injury is six times more likely to have suicidal thoughts than someone without a brain injury. Some may not feel very lucky to be alive. Instead of calling it “luck,” talk about how strong, persistent, or heroic the person is for getting through their ordeal. Tell them that they’re awesome.

Posted on BrainLine June 19, 2009. Reviewed July 27, 2018.

From the University of Washington TBI Model System and the University of Washington Medical Center. Used with permission. http://uwmedicine.washington.edu.

Comments (13)

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.

Professional Organizers help clients with these challenges. Some specialize. They can do the planning and the initial setup for folks to be successful ongoing.

What if your organizing skills are diminished and you really don't know when this took place? I did hit the front of my head hard a few years ago, buy I never made the connection. What do you recommend in this situation? Thanks for sharing your thoughts.

If you are brain injured this is not enough. It takes an uninjured brain to put everything in one notebook and not get confused.'

Me in a nutshell! It's been 3 years and this is my first attempt at a Thanksgiving dinner. I'm considering writing a book entitled "The Misadventures of Cooking With A Brain Injury: Thanksgiving Edition". Ive struggled, I've cried and I've prayed and I might just survive. I'll laugh later but right now I'm very sad and showing myself no grace. I still struggle with finances to the point of ruining our almost perfect credit. People don't get it when I say it's confusing and hard. I might look normal and I may have come so very far compared to where I was but my brain just isn't recovered.

I sustained my latest TBI in April 2015. Lately I have been experiencing fatigue, short fuse and lack of initation - thank you for the article I will try the tips. 

Thank you for the organizational article, its been 3 years for me with non diagnosed CTE as consequence of what was initially thought had been a pretty minor work place accident and then learned of its cumulative effect with prior injuries. Its turned into an un-believable night mare with little or no brain injury help (medical or otherwise) or even recognition apart from support by my amazing family MD. When I read this article it made so much sense explaining why every matter once simple is 3 years counting now extremely difficult. Don't know where this is all headed, barely coping on own and things pile up. When barely managing you find a plate with only so many apples on it, cant add one more with out  sacrificing another and if your not paying attention you loose the entire plate, taking months attempting to regain back to place you once were. With no insurance, no diagnosis and few Canadian resources I am so grateful for your help. Thank you, I Shared your article today with my MD and she was impressed too and can now share with others. BD Alberta Canada

Thank u so much. After being hypoxic bc my Dr didnt recognize septic pneumonia, ICU, a heart attack, renal failure all during a week long coma, you've finally labelled what I experience. Its taken 4 years bc no one wanted to admit their mistakes. Now I have a plan and I know what I'm experiencing is real. Such a relief. Maybe w planning and practice I'll be able to finish my Masters. Yay!

Thank You for this article. I was hit by a bus as a passenger in a vehicle and subsequently suffered a 16 day coma. It is important that everyone knows that although it is difficult, we can, by the Grace of God, overcome it. jc

Thank you for compiling this easy to read, understand and absorb summary/definition of frontal lobe tbi symptoms associated with initiation and task completion. I have been struggling for 4 + years and although I have the insight and education to understand I have not been able to put what I have been struggling with into words. I have even been working with a brain injury home rehab company for 9 months and they have not provided as much information as I have read in this short document. This was clear, concise, organized and descriptive. I have recogized many of the adaptive techniques on my own, but still find it difficult to implement as it requires an understanding of others around me (including "cognitive therapist"). Others need to be organized around me when assisting me or creates more confusion and frustration.

These are all issues I have although my stroke and brain surgery was in my cerebellum, which I was told by one doc, coordinates EVERTHING, from Speech to swallowing - coordination of thinking, are there any links to articles that relate these problems to issues in cerebellum too? 

My son does not have a brain injury. He has a mixed receptive-expressive language disorder. He scores most poorly on the organization of things. He knows how to read and write, he just can't seem to coordinate all of the things in his brain that he needs to do school work. I will be using these tips. Thank you so much.
Thank you for this article I am a victim of abuse and had a head injury. I felt all these symptoms and i have become introverted from being a jolly person. i will visit my doctor
This article was very helpful. It addressed the major points of concern I have experienced after my brain injury. It also gave easy to understand steps to assist myself in dealing with these problems.