Lack of information at the outset which often occurs alongside an absence of referral, diagnosis and follow-up can sometimes leave people believing there isn’t much wrong. When given, information is commonly outdated — for example, hearing that the symptoms will clear up in a few weeks or months or that brain injuries change the personality rather than being informed that brain injury can result in behavioural changes. Myths and out-of-date information can be harmful.
There are millions of people across the world who have been abandoned by their families because of inadequate information. To stop this happening health services must take all brain injuries seriously and ensure people are informed and stay on the medical radar.
When people become isolated, they struggle with everything from keeping a roof over their heads to managing on very little money and while these are serious issues in and of themselves the emotional toll of feeling abandoned can add enormously to the trauma and changes they are experiencing. Forgotten by health services and their network of family and friends, many people fall into depression and are unable to afford medications, insurance or the healthful, nutritious foods and supplements they need to be able to recover.
Outcomes can be severe and may result in bankruptcy, homelessness, loss of income and work, divorce and behavioural changes can result in people falling foul of the criminal justice system.
When people are isolated, they struggle with mental wellness and with accepting they were abandoned when they needed love, support and help the most. People become confused and depressed and strive to make sense of their lives.
Lack of information
However, because of several loopholes in medical protocols and understanding, many people are dismissed without being given any information, a follow-up appointment or referral for a full evaluation, and are often told they have a head injury and to go home and rest.
There is now a much wider recognition of the prolongment of symptoms and outcomes that people suffer as a result of this lack of treatment.
When doctors fail to take people seriously, so too do many families. Families can think that their loved one is malingering rather than understanding that they have severe issues they are dealing with and managing the best they can.
The lack of information also discourages families from researching to find out what they can do to help. Because a brain injury can impact so many aspects of peoples lives and functionality, the outcomes can be challenging for others to grasp.
Another issue that arises is that many families then make assumptions about the outcomes and instead of relating them to the brain injury and loss of cognitive and executive functioning, they attribute changes in mood, for example, to someone’s inability to move past the incident that caused the brain injury. Assumptions can falsely fill knowledge gaps, and people believe their loved one has mental health issues rather than understanding the changes to be entirely related to brain injury.
For example, incorrect information such as the example that the personality has changed can be incredibly damaging to relationships as many people believe this means a permanent change and feel they have ‘lost’ the person they love. Many relationships fail based on the view that this is no longer the same person.
Those on the outside can also suffer from ambiguous grief, distress and confusion.
That brain injury can disrupt behaviour is well understood. The changes that are seen, for example, mood swings, becoming angry more quickly, and so on, are usually transitional and can be helped through therapies. In time people can learn to manage and control their behaviour again, and the innate personality drives much of this repair work.
As the brain heals, a familiar personality can shine back through.
Giving people a chance
Once someone has a qualified diagnosis of their brain injury, a referral for treatments and therapies should follow. Services are available, although because many general practitioners are unaware that a closed head injury can injure the brain, they are often unaware of what is possible or needed.
When a brain injury is recognised, families can begin to understand the struggles their loved one has been going through. A professional such as a neuropsychologist or neuro occupational therapist will often involve the family, and they are given information and taught strategies that help them to support their loved one. This recognition by professionals can bring relief and a complete turn-around in understandings.
When people have fallen through the net, they often try and educate their families themselves. Sometimes information is still dismissed because people think it is hypochondriacal – again believing that if anything were wrong, then their loved one would have been treated rather than sent home.
These struggles can go on for many years, and while some families do come to recognise that their loved one ‘fell through the net,’ this still doesn’t necessarily mean that people will know that they should seek medical support and help.
The best way to heal relationship problems and to help everyone find their way back to the same playing field is to get that referral to see a specialist. If finances or insurance don’t cover this, people must learn as much as they can to help their loved one get onto a healing path by their own means.
The best way to maintain relationships is to take brain injury seriously. New MEG imaging techniques can pinpoint the source of damage within the brain, and although not currently used to diagnose brain injury medically, further research is underway to bring these scanners and technologies into diagnostic use. The evidence exists to show the damage caused by shearing and tearing and these new technologies are also able to differentiate the differences between PTSD and mTBI.
Several countries and universities are involved in this research and at the time of writing (Oct 2019) need further funding to improve collaboration and to bring these technologies into clinical use.
The important thing to bear in mind here is that researchers are fully aware of how damage can occur in the deep structures of the brain and mild or concussive injuries can also cause significant cognitive impairment. Scientists are also working on bringing other biomarkers into clinical practice as an aid to diagnosis, but until these changes happen, people will continue to struggle with ages-old issues. In time doctors will be better informed and more able to get a grip on the serious implications of a brain injury because of evolving technologies.
In the meantime, people without medical support or recognition need to be aware and to educate themselves.
Things you can do – from the outside
When it comes to brain injury, much of the damage can be invisible and challenging to understand. A brain injury will not heal in the same way as a broken bone or surgical scar and without the right treatment and input at the front-end, the consequences can be insidious and over the long-term can lead to cognitive degeneration and inflammatory-related disease.
Everyone has a crucial role to play to support the best possible outcomes for a person who has a brain injury. Think of change as having a life-time impact. Research shows us that people who receive immediate and aggressive rehabilitative treatment and have support from their network of family and friends improve faster. There will be many adaptations to make, and without doubt, the more knowledge and understanding you have, the better equipped you will be.
Every brain injury is unique, so the signs and symptoms of brain injury will be individual, personal and complex. How a person thinks and behaves will change, and the degree to which this happens will depend on the site(s) and intensity of neurological damage. The effects are different for each person, and how they react, their needs and feelings will be very personal.
People recover better and remain more positive and focused on their recovery when they have continuing support from those around them. While outcomes and symptoms may fluctuate from day-to-day, especially when someone feels stressed or under pressure, their well-being is paramount, and variations will need management and understanding.
Everyone will need time to adjust and the more knowledgeable you are about what to expect, the better you will be able to manage and accommodate changes. Some people will struggle to describe differences in cognitive ability and feelings. They may not be aware of how their brain injury has affected them, but this doesn’t mean that you need to work it all out. What helps is working with a neuropsychologist or neuro occupational therapist who will be able to explain impairments and provide strategies for managing communication and daily living.
Support groups will also welcome you and your relative or friend. Encourage them to reach out and to talk to others in face-to-face groups or on-line. Many people feel more comfortable when they share their experiences on-line as they may believe this will have more positive effects on their understanding and feel more confident about managing relationships. People often find they have more control in on-line support groups as they can choose what they ask and what they respond to and might be more open or find it easier to understand peers with similar experiences. They can also find other people to chat with at any time.
Changes will also affect you and people often describe how they eventually collapse under the strain of caring for someone who has a brain injury. A lot of the time, people set out with ideals of being strong for their loved one, and they forget they also have needs. From as early on as possible, make sure that you also have people who understand and can support you. Encourage them to also educate themselves with some basics about brain injury because the more people understand, the more they will know when and how to fit in. Give the people around you the chance to help; this is no time for heroism; you will likely be ‘playing’ a long game.
You may also find that it helps to delegate practical tasks so that you have more time and energy to listen to and help your loved one. If it is a friend who has a brain injury, you may be able to think of things which will also assist their family. Talk and ask about what you can do and remember that sometimes people may be feeling overwhelmed and might not react in ways you would expect. Offer suggestions and let them know what you are happy to do.
Although your friend or loved one has a brain injury, they will still want to retain their independence. Managing needs can sometimes be demanding because of changes in understanding and perhaps a lack of recognition about deficits in your loved one or friend. You may have to take a lot of behavioural changes on the chin and to be aware that it is better to do this for the sake of personal integrity (because the needs you are meeting are authentic) is better than walking away.
Understanding at the outset that it is going to be a rough journey can help you be prepared for what may come. There is no getting away from how tough it is going to be for you to adapt and learn.
To recap, the things that help are increasing your knowledge about brain injury outcomes, getting professional help which may include counselling for you, and educating others and reaching out for support.
Do think about who you are, your own life priorities and needs and maintain inclusion of these as much as you possibly can. Brain injury doesn’t just go away, and you may need to allow your wishes to take precedence sometimes so that you can feel some normality. Having a backup team and including others around you can help you to do this.
Some friends may wonder why you are taking a spa or golf day when you have a loved one to care for, and it may fall to you to educate them about maintaining your health and sensibilities over the longer term. The more everyone knows about what to expect, the better prepared you all are.
Sometimes people will drift away, and it is better to let them do so. You will meet other people who will understand. Life flows, and it is better to go with it rather than stressing over things you cannot change. Don’t be too proud to let people know you also need support.
Your loved one or friend will adapt over time and sometimes it is better to let them figure things out for themselves. One thing is certain: a brain injury is never static and however slow the recovery process seems to be – it is always happening.
Safety is always paramount, and it can help to have and keep an open dialogue with everyone concerned. No one knows everything and in many respects supporting anyone living with a brain injury is a team effort. Keeping everything balanced can feel like a juggling act, but the more effort you put into this, the less alone or isolated you will feel. No one can take the whole load, and no one should try to. It may feel alien to reach out, but this is a time to be practical.
Practical ways to help a friend or loved one:
- Be aware of neural fatigue – an injured brain becomes tired much more easily
- Try to keep outings short – all information coming in from the environment can be exhausting
- Light and noise can be difficult for people living with a brain injury to filter and process
- Organise other friends and family to help with daily living – e.g. taking care of children or helping them with homework
- Help with daily tasks like shopping, cooking, banking/money management and form-filling
- Organise support. Speak to social care providers, support organisations and doctors
- Make regular times to visit or help as this can help people to manage time and to be more organised
- Understand if someone is unable to handle group activities or changes/cancels plans at the last minute
- Be accommodating and try to keep in mind that your loved one or friend is doing the best they can
Things you can do from the inside
Getting to grips with a few basics can not only help you but can also help those around you as they are also dealing with the transition of one experience of life to a new one.
These changes don’t mean that one life has ended and another has begun. What they mean is that things are now different from the way they were before.
How you think about the changes you are dealing with will affect your psychology and beliefs, and they will either strengthen or weaken you as you walk this path post brain injury. There are no rules, and we are all individual. Changes are almost always complex and can take time to get to grips with and take on board. Those who retain their insight are more likely to grieve the loss of their dreams and ambitions. Change can be challenging to adjust and get used to, and it can help to be aware that you are not alone and that it is possible to exchange and discuss thoughts and experiences with other people who are going through something similar.
Your family and friends will also be going through change and adjustment, and while they still have their skills and cognitive abilities, it can be debilitating, horrible and frightening for them too. All of them will feel and see your struggles, and their empathy can cause its’ own confusion and heartbreak.
Without a doubt, sometimes ignorance is bliss. A brain injury is always unique and will affect everyone individually and at profoundly different levels. Hang on to what feels ‘right’ for you because however overwhelmed or confused you are this is often all you have to work with, especially in the earlier stages of recovery. It is okay to get things wrong, and it is okay to demonstrate and honour who you are and how you feel.
For those with more insight, it doesn’t necessarily follow that you will be cognitively aware of your behavioural changes or struggles. Whatever is facing us, we can only do our best and holding this as the fair expectation we have of ourselves can deflect some of the overwhelming confusion. Be gentle with yourself and try to understand that your brain is hurt, your neurological pathways are damaged, and it will take time to rewire and to recover control over your mind and life.
Your relationships are crucial to your well-being and how well you recover. The people who surround you will want to help, and their perspective will be different from your own, which is okay too. Try to listen, try to take on board what they are saying to you however weird or alien it seems. Brain injury can be like living in blinkers where you can no longer see the whole picture. People around can see more.
You are likely to go through a cacophony of confusion, and it will take time to adjust and learn what is different. That you can rewire your brain and can recover is entirely possible. You will get out what you put in.
You may often need to dig deep for strength and courage, and it can help to use a journal to express how you feel in these trying times to release the pent-up energy and frustration living with a brain injury inevitably brings.
Try to talk about your experiences and feelings. If you feel overwhelmed then again, write them down. It isn’t always easy to communicate or to understand emotions and thoughts following brain injury, and it may take you time to make improvements.
Focusing on developments, however tiny, can help you to see and understand that there is only one way that you will go from here – forwards. Keep hope afloat and alive by noticing and focusing on progress. The last thing you want to do is to consciously or unconsciously feed your injured brain negative emotive feedback or criticisms. To do this effectively, you need to understand that it is your brain that is injured and not who you are.
You may notice changes in the way you communicate with people and that perhaps you feel less trust or are confused by what they are telling you. Disorientation is normal, and in time things will refind their own balance. The main thing is to keep going. Avoid being impatient or self-critical. Remember – it is your brain that is injured, and it needs your support to recover.
If you feel that others don’t understand you then try to explain why in the best way you can. Encourage them to find out as much as they can about brain injury so that they can meet you in the middle. This experience is hard for them as well – although it is true that they have the greater capacity to learn and understand.
As independent as you feel and know you have been previously it is important to recognise that you are more fragile and vulnerable now because your brain and thoughts are no longer synchronising the way they did before. Accepting help can be difficult, but once you cross the recognition threshold, you will come to know that you do need to maintain relationships and will be more or unusually reliant on the people around you. Take every bit of support and help you can get because your brain needs you to.
Ask your family to find out all they can, ask them to support you in getting professional help and ask them to share all they learn with your friends. The more people understand, the more they will be able to be there for you.
Alcohol and drugs
Alcohol affects the frontal lobes and further impairs thinking. The forebrain is crucial in helping us to feel in control of our thinking and ability to notice familiarity in cognitive function. You need to be focused on recovery, not on delaying it. Your brain injury is not going to go away. Think of your injured brain as a child – it needs you to take care of it.
Alcohol and drugs affect motor coordination and decision making. It is worth bearing in mind that your brain injury will also be affecting your loved ones and your relationships – do you want to make things worse?
Alcohol and drugs affect the midbrain, and you lose further control over your emotions and behavioural responses to the people around you. Do you want to create distrust and fractures in your friendships and relationships with your family? Do you want to put yourself at risk of further injury if you pass out or cannot make the best judgements?
A brain injury will make it more likely that you will have increases in times when you feel sad, depressed or lonely. Drinking or doing drugs will make this worse. Do you want to create more of what you want to get rid of?
Drinking and taking drugs affects heart rate, your ability to maintain your core temperature, appetite and conscious awareness. A brain that is already damaged will find it harder to sustain life when it is dealing with toxic overloads, increasing your risk of dangerous and potentially fatal conditions. Is this what you would consciously choose for yourself?
Drinking and taking drugs can increase your risk of developing or having seizures. There is no way that anyone would consciously choose to put themselves at risk of developing epilepsy – think before you drink or drug!
Studies tell us that people who use drugs and alcohol are at higher risk of having another brain injury. By taking control of the things you can choose and manage, you can improve your symptoms and outcomes.