Often the focus for a person living with brain injury is on managing the physical and cognitive effects, not noticing changes in emotions after brain injury.
It is easy to overlook the emotional ups and downs that come with such a major change to your life.
Each week I look forward to wonderful emails from people all over the world in response to these articles. One email I received this week prompted me to think about the many conversations I have had over the years, with people up against their own reactions, responses and emotions after brain injury, along with those of their family and friends.
The letter (yes it was an email, but I like to think of them as letters) was about the struggle to understand, and live with the life changes, that come with brain injury. The emotional roller coaster.
I am not talking about the emotional changes that happen because of damage to the brain. I am talking about the emotions, feelings, responses, and reactions that come with the realisation of major life change. The realisation things that won’t be the same again.
Emotions After Brain Injury
To begin – play the IMAGINE game – stop for a moment and imagine that right now, an injury or disease stops you being able to live your life as you have been living it.
Imagine you cannot think as clearly and effortlessly as you have in the past. You can no longer do your most favourite thing. You can no longer be the person you have been till now. You discover the people you have always counted on, no longer seem to understand what is going on for you.
What thoughts are you having? What changes come to mind? How does it feel? What reactions do you notice? What would you miss? Who would you turn to?
We can never exactly understand how this might impact on our lives. Yet imagining can go a long way to guide you, in understanding and supporting a person who lives with brain injury.
Life changes after brain injury
What were some of the changes you thought about?
Did you think about any of the following? You can add more to the comments below.
- Changes to your plans for the future, and the life you thought you would have.
- Change and losses in big, and small areas of life. A loss of sense of smell is common after traumatic brain injury and in the overall picture it may seem minor. But then imagine in amongst all your other changes, not being able to smell your favourite smells – food, rainy days, etc.
- A challenge to your beliefs, your spirituality. How could this happen when I have strong beliefs? Why would my God let this happen?
- Your roles in life have changed, or will change over time. This might be in one or more areas: family, job, community.
- All that you thought was solid and safe, now feels scary, uncertain and even dangerous.
- Family and friends are struggling to understand what is happening, and may seem less supportive, less understanding of what you are going through, than you might have expected.
- It’s hard to find a place in your old life and it’s really hard to find a new one.
Feelings, Reactions and Emotions after Brain Injury
What kind of feelings and reactions might all this create? What are you thinking and feeling?
It will be different for everyone and will likely come and go and change across time but some common reactions include:
- Anger at self, at others, at the cause, about the changes
- Denial “I am OK I can still do everything I used to”
- Feeling depressed
and many more.
The ‘Goldilocks’ Model of Support: Emotions after Brain Injury
Strangely. As I thought about what supporters can do, I kept thinking of Goldilocks!
Yep. I know that sounds crazy when talking about such a serious topic. Bear with me and I will try and explain myself – remember what Goldilocks did? (Well that’s if you even know who Goldilocks is! I apologise for making that assumption). If you don’t know Goldilocks, or you just want to be read a story, here is a reminder:
In summary Goldilocks found one of what she tried too much, one too little and one just right.
So how about a ‘Goldilocks model of support’. No, we don’t all have to grow long golden curls. Maybe something more like this:
When supporting a person who is dealing with the emotional feelings and reactions to brain injury:
- Don’t do too much (or a person gets crowded out and can’t work it out for themselves),
- Don’t do too little (or a person is left feeling abandoned and unable to find a way out).
- Do just the right amount of everything:listening, talking, guiding, stepping in, stepping back, supporting.
Five things Goldilocks might do to support people manage emotions after brain injury
Let me see if I can get this Goldilocks model to be a bit more practical:
- Acknowledge and give just the right amount of support and empathy
Too much support can smother and can seem like pity or sympathy.
Too little support such as the “get over it” approach can make it seem uncaring, not understanding.
Just the right amount can assist a person grieve for loss of their old life and one day to hopefully start making a new changed life.
- Provide just the right amount of structure and routine.
If we have lost control we often turn to structure and what we know well to protect us.
Too much structure can seem confining and controlling.
Too little structure continues the feeling of spinning out of control.
Just the right amount gives a person confidence and solid ground to stand upon
- Find just the right level of support to create success.
Too little support and things might not be achieved.
Too much support and a person can feel frustrated and inadequate.
Just the right amount of support means a person can do as much as they possibly can, and a bit more, and feel successful.
- Provide just the right balance of acknowledgement, information and encouragement.
Too much and a person who is already struggling with new stuff might feel they are drowning.
Too little and there is no opportunity to develop skills and awareness.
Just the right balance; with time the emotional responses and feelings of loss may be replaced more and more, by understanding and acknowledgement of a new life.
- Respect and respond to the correct age and stage of each person whatever their emotional responses and behaviour.
Responding too far below their age, makes a person feel belittled, patronised, like a child, disrespected. Most of us have the capacity to behave like a child from time to time – be honest! Yet when behaving like a child, most of us don’t want others to treat us like a child.
Respond too far above a person’s age; they can feel confused, bewildered, not understood.
Just the right response for the age and stage of the person gives opportunity to feel respected and valued, as an equal, to reflect on what is happening, and hopefully eventually to overcome unhelpful responses.
I have talked before about about ‘Brain Injury Journey’, a journal published by Lap Publishing. It is well worth a look, the June 2013 edition has a range of articles about emotional changes for people with brain injury and family. You can sign up for free online copies at Lap Publishing and look up the June 2013 edition.
There is so much more to supporting a person with changing emotions after brain injury than this short article. Please share your experiences, any thoughts or questions either in the comments, or by sending me a ‘letter’ HERE.
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