Frequently Asked Questions
How does a brain injury affect the individual? The family?
A brain injury is something that is often unexpected and its effect on a person work the same way. Due to the changes in the way the brain communicates with the rest of the body, a variety of changes may occur. These effects may be temporary or more long-term depending on rehabilitation, areas of the brain, supports, or overall medical and mental health.
Some common areas affected after injury are physically (movement, interpreting sensations, vision, balance, coordination, etc.), processing (memory, attention, decisions, initiation, impulsivity, etc.), communication (speech, language, conversations, affect, etc.), and emotions (regulating, identifying, expressing, etc.). Oftentimes behavior get categorized as a change after brain injury; however, “inappropriate” behaviors are often a form of communication. If an individual is unable to communicate frustration, a need, or feeling unsafe, a behavior (yelling, odd gesturing, etc.) may occur. When this happens it is important to investigate the situation before and after to identify the need rather than punish the communication.
The family and support system are often just as affected by a brain injury. The future becomes an unknown, with more questions than answers. Families may feel a variety of emotions throughout the process including: guilt, anger, grief, worry, sadness, and/or hope. It is important to know that these are valid emotions and okay to feel. It is when these emotions are taken out on others (in frustration) that it may lead to isolation. Reach out for help in the form of a support group, professional to take to, or a hobby/resource for self-care. Taking care of yourself can mean better and longer help for your loved one. Likewise, if you have had a brain injury, remember to thank your loved own and tell them how appreciative you are of them going through this journey with you.
When can I expect myself or a loved one to “recover”? What is the typical process?
Many people after brain injury are searching for that magical moment when they feel “all better.” Unfortunately, the healing brain is a little more complicated than a broken bone. Some people never recover after brain injury, but that does not mean that significant amount of progress has not been made. It is this reason that it can be helpful to see brain injury rehabilitation as a process, a journey not to one’s previous self but their future one.
One’s journey after brain injury often begins in the emergency department (ED) of a hospital or trauma center. Your loved one may be alert and awake or comatose and unresponsive. Medical professionals may be asking questions to learn more about what happened or about decisions related to care. It can be stressful because of the fast-paced environment but the number one goal is your loved one's safety.
Critical care allows for round-the-clock monitoring and prevention of a medical crisis. Time spent in the intensive care unit (ICU) can feel like a whirlwind filled with stress, new terms, and future unknowns. There also may be a variety of medical equipment, tests, and interventions performed by the entire treatment team. Your loved one may be unconscious during this time, but feel free to speak to them encouragingly and avoid saying anything you might not want them to hear if they were more alert.
Rehabilitation can occur once your loved one is medically stable and able to participate in therapies to help with resuming activities (dressing, walking, speaking, eating, and using the bathroom). Maintain good communication with medical staff, asking questions and how to be involved in therapies. Identify people that can help out either at home or in the hospital. Everyone's rehabilitation journey and outcomes may be different - very rarely can a deadline or timeline be put on progress after injury.
Going home can either be all you want while in the hospital or seem extremely overwhelming. You may want additional training for caregiving tasks, medical equipment, modifications, or connection to additional rehabilitation resources. The earlier you start planning for discharge, the more supports you and your loved one can be connected to. Even though it may be stressful, being involved in decision-making about care can be vital. Be ready to advocate for the needs of your loved one and explore all the options available for care.
Individuals may transition to rehabilitation in a comprehensive inpatient unit, long-term acute hospital, skilled nursing facilities (SNFs), or other residential settings. These resources can allow your loved one to continue rehabilitation depending on care level needs. Some individuals may be able to remain home with assistance (home health or community based services). When choosing care after the hospital, learn from those currently receiving services, explore more than one program, and identify any financial assistance available.
How do I know if I or someone has/had a brain injury?
Some individuals may not even lose consciousness or black out after hitting their head if the injury is mild enough. This can make brain injury difficult to detect, particularly if it does not show up on neurological scans. Clinical interview and assessment by a medical professional is needed to make an official diagnosis of brain injury. Some questions to consider for further evaluation:
- Have you ever been hit in the head?
- Have you ever blacked out or lost consciousness for any period of time?
- Have you have had or been told you had a concussion?
- Do you, or did you ever, play contact sports?
- Have you ever been in a car or pedestrian accident?
- Have you ever been in a physical fight or a victim of violence?
- Are you a veteran? Were you ever injured in service?
Some additional screening tools include:
What are some tips on how to best work with a person living with a brain injury?
- Create structure & keep routines with scheduled breaks – Minimize distractions/clutter and break tasks, goals, or instructions into smaller, realistic ones. Consistency & a schedule can help with memory and reducing confusion.
- Practice creativity and flexibility in rehabilitation – Make opportunities out of every activity or chore into practicing a skill. Use repetition, rephrasing, and cueing while providing written, accessible handouts.
- Connect with resources & people – Prevent any feeling of isolation by linking with supports in the area or online. Identify what you need with self-care to prevent burnout, fatigue, and frustration.
- Educate, then advocate – Educate yourself and others on brain injury to advocate for your needs and services. Look online for resources, events, education, committees, and more.
- Try, adapt, and modify - Every person is different – Use planners, labeling, color-coded systems, notebooks, Smartphone apps, communication books, etc. to help with everyday tasks. If something doesn't work or fit, brainstorm ways to modify it for the person. Seek out independent living or employment specialists for assistive technology or tools.
- Be proactive in solving problems & plan ahead – Offer or ask for on-the-spot, specific feedback (what do you want vs. do not). Create plans or develop alternative strategies for escalating mood/behavior. Investigate behaviors for what they are trying to communicate (a need, safety, or discomfort).
What if I need to make a referral related to brain injury? What services are out there?
Having a variety of specialists allows for comprehensive rehabilitation after brain injury. The type of professionals involved varies depending on setting and may be involved during or after the hospital/rehabilitation stay.
- Case managers, discharge planners, and social workers facilitate service coordination
- Chiropractor assists with alignment of the spine, movement, & pain
- Lawyer can assist in litigation or accessing benefits (i.e. Disability or Special Needs Trusts)
- Life Care Planner coordinates and plans care for a lifetime
- Neuropsychiatrists provide medication management
- Neuropsychologists provide assessment of thinking skills, behavior, and emotions
- Neurologists specialize in medical needs and help coordinate care with referral
- Neuropthamologists and address needs of vision related to the brain
- Occupational therapists (or OTs) address practical areas of daily living and regaining skills
- Physiatrist or rehabilitation physician specializes in physical medicine & rehabilitation
- Physical therapists (or PTs) evaluate and treat the ability to move the body
- Recreational therapists provide activities to improve skills
- Rehabilitation nurses monitor body systems and coordinate with the team
- Speech-language pathologists (or SLPs) evaluate comprehension, communication, and swallowing
- Vocational rehabilitation counselors evaluate employment and education opportunities