The key to understanding how to help and support someone after a brain injury is learning about what they’re going through. Having a better understanding of brain injury and its effects can help us empathize more fully and understand their needs. Also, most patients have a hard time putting into words what symptoms they are experiencing and what things they need help with, so patience is a prerequisite.
Here are some important things to point out.
Get medical attention –
Even a mild brain injury may affect your brain cells temporarily, while more serious brain injuries can result in bruising, torn tissues, bleeding and other physical damage to the brain. These injuries can result in long term complications. So, getting medical attention is a top priority. Helping those with a brain injury stay the course of treatment is one of the best ways we can help.
Neuro-psych Evaluation & Cognitive Behavioral Therapy –
This is the most widely used diagnosis and treatment means after medical attention. Neuropsych evaluation should follow any brain injury diagnosis, as it assesses brain function by measuring such areas as attention, problem solving, memory, language, IQ, visual-spatial skills, academic skills and social-emotional functioning. Neuropsych evaluation may lead to a referral for cognitive behavioral therapy (CBT), which is effective for treating patients by focusing on understanding why they behave the way they do. At the root, CBT helps patients uncover distorted or unhealthy thinking patterns. Again, helping brain injury survivors stay the course of their diagnostics and treatment is one of the best ways we can help.
Support Group –
Living with a brain injury, one of the most valuable activities is to join support groups, and connect with others who understand what you’re going through. Support groups offer you the opportunity to cope with brain injury, recovery, and get back to a normal life, while also connecting with and helping others. Joining a support group can help survivors of brain injury, their families, friends, and caregivers gain valuable knowledge and learn about resources from other attendees. Support groups can also provide a sense of community and identity for survivors, and families who have struggled with a brain injury. We suggest joining at least two support groups, especially ones with effective moderators.
Caregivers –
When someone suffers a brain injury, the entire family is affected. The person with the brain injury is experiencing difficult symptoms and cannot perform the same tasks as before, and the entire family is suffering many emotions. There are many feelings of urgency, distress, burden and anxiety. I know this first hand as a parent of a child with a brain injury since age 12. But when the dust is settled, there is but one option: forging forward and trying to figure out a game plan. So, here are four guidelines that may help during this stage.
First, we can start by taking the time to help create a list of symptoms, the trigger(s) for each symptom, things that make those symptoms better or worse, and prioritize this list by severity and impact on daily living. Once we have such a list, then it becomes clearer which symptoms are having the biggest impact, and what trigger(s) we need to eliminate or minimize in order to help reduce those symptoms. Please note that some symptoms come and go without specific triggers, and those are the symptoms that we need to monitor and report to medical, psychological, or cognitive rehabilitation therapy professionals for further help.
Second, help them create a list of prioritized daily tasks, and determine which task they may need help with. It is important to note that the difference between what needs done and what can get done can weigh heavily on most of us. But for brain injury survivors, even a small gap in meeting desired goals can represent failure and have an adverse effect. Please note that some brain injury survivors may be new to this gap or failure, and remaining in that state may lead to a great deal of frustration and even shutting down. So, it is important to help prioritize necessary tasks, eliminate unnecessary tasks, and create new ones based on their current needs. Then, help them create a plan of action, adjusting as you go.
Third, help them create a friendly home environment and minimize overstimulation. This can be done by creating simplified home organization, with minimal clutter, and by making needed daily items and tools visible and accessible. Brain injury survivors will spend more time at home than before. So, a thoughtful home arrangement that is based on their needs and desires will go a long way in helping them stay reasonably comfortable and productive while their brain is healing. Also, expanding the comfort zone outside the home goes hand in hand with a friendly home environment. This will prevent brain injury survivors from becoming a couch potato, and will also prevent social isolation. This can be done by finding, creating, or adjusting places outside the home that reflect the same value of simplicity, comfort, and reasonable navigation.
Fourth, help them create a sensory friendly environment. This can be done by altering the intensity of sensory input at home and outside, including bright light, loud sound, and/or smell, depending on the affected sensory. If they have a negative reaction to bright light, remind them to wear sunglasses outside the home, and help use lower lumen and color temperature lighting at home. Lumens measure how much light you are getting from a bulb, allowing you to buy the amount of light you want. Also, studies have found that different color temperatures affect mood, heart rate, and circadian rhythm. Different intensities of light cause the body to release different hormones. So, start with dimmed soft white light, 50-200 lumens in the 2700K-3000K color temperature range, and adjust from there.
If they have a negative reaction to loud sound, wear cotton (or something similar) in ears outside the home, and control your sound decibels and sound pitch at home. Decibels are like the volume and are used to measure the intensity of a sound or the power level of a sound signal, and pitch is the position of a single sound in the complete range of sound, like the high pitch sound of guitar vs low pitch of the bass. So, start with 40-60 decibels and adjust from there. There are many devices that can help you measure sound decibels, including your iWatch. Pitch is different and will vary from person to person, but you can use a sound level meter to measure. This will help you determine what pitch range to avoid. It is interesting to note that the most common hearing loss occurs in the high pitch range.
Brain injury can lead to confusion for the patients and caregivers as to what symptoms are normal or require professional help. When in doubt, seek professional help. Sometimes brain injury survivors are tired of going to doctors and hospitals, and caregivers must encourage professional help when needed.