As the family member of someone who has suffered from a Traumatic Brain Injury, every day and sometimes each hour, is a learning experience.
And so I’ve decided to put together some of my key learning’s. This is in the hope of sharing some of what we have been through in the hope we can help others in the same situation, or who know someone who has suffered and is recovering from a traumatic brain injury and are perplexed, concerned, confused, and so forth.
Honestly, the advice and information that you are provided or that is available can be scarce or just plain confusing, and support can be erratic (disappointing?) at best.
It is also my hope to help combat the stigma associated with a brain injury – as it is definitely a problem. I thought stigma associated with mental illness was bad enough – but a traumatic brain injury. That’s a whole other ball game.
Fatigue
Aside from physical fatigue, traumatic brain injury survivors suffer from brain fatigue. This is what I call ‘brain fog’ – a familiar term for those like myself who have dealt with depression.
Brain fog is when it’s hard and tiring to think, process, and organise thoughts. It’s like you’re really tired and have trouble focusing. As a formerly active person, this can be incredibly difficult to acknowledge, to accept your new ‘limits’, and then to manage – which a lot of the time involves saying no, or sitting at home quietly ‘resting’.
This can also come as a shock to others as it can result in a complete change in lifestyle, and what some perceive as ‘antisocial’ behaviour.
“They’ve changed.”
“All they do is stay at home these days.”
“They never call.”
“I don’t know how to talk to them anymore.”
“They’re not the same person.”
Patience and understanding is what is needed, as well as support. Support for the new lifestyle which involves balance, learning to say no and prioritising ones health and wellbeing – both physical and mental – above everything else.
Recovery
‘Recovery’ from a traumatic brain injury (is there such a thing as recovery?) can take a very long time, and is generally measured in years. Even when appearing better, generally speaking, there are things that may linger for a lifetime. That is why it is called the ‘invisible disability’, although I personally do not like using that ‘d’ word.
Regardless, recovery and the length of time it will take is something that needs to be acknowledged by all involved – friends and family included – as everything may appear AOK on the outside, but underneath there’s a whole different story.
Getting out is hard
Crowds and sound can overload the brain of someone with a brain injury, especially in the early stages as the brain doesn’t filter sounds as well as it did before.
Limiting exposure is a good coping strategy, as is easing into it slowly. You may only go to a party for 30 minutes – before it kicks off full swing – to say hi and retreat. Or, you may spend your time with one person at a time, so that you can fully concentrate on what they are saying.
This is why I encouraged people not to visit my family member when they were in hospital – it was too much for them, and because they could hardly communicate at the start, they would become distressed and fatigued, so much so that it would hinder their recovery.
Memory issues
People need to realise that not remembering doesn’t mean they don’t care or that they are being ignorant – it’s just that the memory may have just vanished.
And then there are things such as dates and important occasions. Generally, it’s easy to get a bit annoyed at someone close to you for forgetting something…but when there’s a brain injury involved, they can’t help it! How can you be angry at someone for that?! That’s where developing a system comes in handy – as well as your own memory. All you can ask of people is for understanding if you forget something important like a party or a birthday.
Changes in personality
Anger, sadness, and irritability…it is so important not to take it personally. Most of the time this is due to frustration, pain, fatigue, confusion, or just anger that the injury happened in the first place.
This can be hard to handle, especially when you are in a relationship, as you just never know which way the mood is going to swing. Once again, this is where patience and understanding comes in handy – mindfulness is a great tool to help perfect this!
On the other hand, if you make fun of someone with a brain injury…I would recommend not to. Blokes, as blokes do, rib and tease each other at the best of times. Seriously dudes, it’s not on. And when it happens time and time again, well, it’s bullying, plain and simple.
Prioritisation can be a challenge
Prioritisation is a biggy.
Dependent on the area of the brain that has been effected, the ability to prioritise can be severely impacted. The best solution is to take things slowly, and to take one thing at a time. It also pays to communicate – to talk about your priorities as a couple, family and individually.
Here’s a few things to try:
- Writing things on calendars,
- Sending calendar appointments via email,
- Verbally reminding the person about things every few days and on the day,
- Writing on post-it notes and leaving them around the house.
A Little Patience
Patience has been, and continues to be, the biggest learning curve and test for me. I have a habit of adding my 2 cents to a conversation, or even like to make suggestions and get involved as my way of helping, which sometimes results in an argument.
I’ve learned that this is a double edged sword, as even though I’m trying to help, I’m also interrupting the flow of thoughts and words. Once they lose their place they may forget what they were talking about or what they were going to do. This can lead to confusion and irritation. At worse, they can feel like they are being treated like a child.
Patience, as well as active listening, is key, as is allowing them to work through things in their own time.
Multitasking
Multitasking is a no no. Coming from a chronic multi-tasker, this involved a huge change!
In the early days, it takes someone with a brain injury a while to deal with one task. It involves focus and lengthy silences, potentially confusion or muddled speech/writing, anger or frustration, and so on.
The best way to manage things is by taking one thing at a time and helping them to focus. Patience comes in handy. If you’re like me, you can be like a bull at a gate and just want things done, or, like me again, want to help or show them how to do something. My advice to you is don’t do it. This only ends in an argument or them feeling like you are treating them like a child – or even worse, stupid.
If you need to, step away, grab a cup of tea for both of you, breathe or meditate. Doing one thing at a time is potentially something we all need to do in order to decrease the stress in our lives anyway!
Stress is a trigger
Stress can result in mood changes, forgetfulness, headaches, confusion, arguments…
These days we do our darn best to try to minimise stress as much as we can, as well as maintain balance in our lives. We have no choice. Thus, we limit the amount of things we do each day and week, we say no A LOT, we rest, we prioritise and talk.
Sometimes it can be the littlest of things that sets a ‘stress attack’ aka panic attack in motion. A bill in the mail, an email, a text message, a thought, a comment from someone, a dream, or silence. Learning mindfulness techniques have really helped me. This has helped me learn to step back, breathe and not launch into attack or counter-attack.
Learn to live in the now
Something such as a near death experience or a traumatic brain injury changes your perception of people, the world, relationships and life itself.
Simply put, there is no going back to the way it was before even though at times you wish like hell it would. So learning to live in the now, taking one moment at a time, is essential. As is counselling. You probably need it, and there’s no shame in that. So do it. It will do you, your loved one, your family and even your friends the world of good.
