Traumatic brain injury (TBI) is without doubt a life-changing event. It impacts almost every aspect of life, and putting life back in order is challenging for those who are injured as well as their family.
Going home after rehabilitation (rehab) is a major step after TBI. It can be exciting to return to the comforts of home, but it can also be challenging.
Our team of professionals from the University of Alabama at Birmingham Traumatic Brain Injury Model System (UAB-TBIMS) has put together some tips to ease the transition from rehab to home. We have also added links to valuable resources to go along with our tips.
Learn about TBI
It is only natural to have questions. Don’t be afraid to ask questions, but it is important to realize that medical professionals may not have definite answers at first. Sometimes you have to wait to see what happens.
Some common questions are answered in fact sheets from the Model System Knowledge Translation Center (MSKTC). These fact sheets provide useful health information that is based on research evidence and/or professional consensus of the TBI Model Systems. These fact sheets are important to read in the early days after injury.
- What happens to the brain during injury and in the early stages of recovery from TBI?
- Brain injury impact on individual’s functioning
- The Recovery Process
- The impact of a recent TBI on family members and what they can do to help with recovery
- TBI and acute inpatient rehabilitation
Keep a balanced mindset
Everyone hopes for a full recovery from TBI. Although most people do see improvements after injury, they often continue to have some problems related to the injury. This makes it very important to participate in rehab to learn the skills needed at home. Here are some examples.
- Work with therapists and nursing staff to safely manage physical problems and maximize activities of daily living (ADL).
- Ask about a home evaluation. This is when a therapist (usually an Occupational Therapist) goes to your home to evaluate your skills in a real-life setting. Some areas of evaluation might include ADL, mobility skills, and general safety concerns with bed rails, bed alarms, and door alarms.
- Work with a neuropsychologist to learn to manage cognitive and emotional problems. Here are two related fact sheets.
- Cognitive Problems after TBI
- Emotional Problems after TBI
Minimize Stress
There are a lot of adjustments to make in the first few days after getting home. Basically, you are establishing a new “normal” for your life. It can feel overwhelming, but that feeling usually fades as you work through problem issues and relearn how to best manage your daily routine. As you do this, you want to reduce the stress as much as possible.
- Start out slowly and ease back into daily activities. It takes time to regain strength and stamina as the body is recovering from the trauma of the injury. It is best to avoid doing too much in a day. Do one thing in the morning (outpatient rehab, exercise, appointments, etc.) and take it easy in the afternoon.
- Set limits with visitors. People often want to visit after you get home. They may have good intentions, but visitors often do not understand the complexities of TBI. It is usually best to simply have quiet time to recover and establish a daily routine.
- Keep a schedule. Patients usually follow a strict schedule during rehab. That schedule may or may not work for you at home, but it is important to establish and closely follow a schedule that works for you. This includes setting times for daily activities and sleep time.
- Use your smartphone. In a previous issue of Brain Waves, we featured a number of apps that we considered to be helpful for organizing tasks, reminders and appointments. Newer apps (Google app for android, Siri for Apple, and Cortana for Windows) can act as your own personal assistant and help you avoid feeling overwhelmed.
Establish Healthy Habits
Too often, people with TBI settle into unhealthy habits after injury. Their diet is unhealthy, and they spend too much time on the computer, playing video games, or watching TV.
Physical activity is not usually recommended too soon after injury, but, once cleared by the doctor, everyone with TBI can benefit from a healthy diet and physically activity. In fact, many activities enjoyed before TBI are often enjoyable after injury, even if adjustments are needed to safely do them. Trying new activities can also be fun.
- The National Center on Health, Physical Activity and Disability is a great resource to help guide people with TBI to safely maintain a healthy lifestyle with physical activity and proper nutrition.
Use Available Support
If you are a person with TBI or family member, you are not alone! And you have some valuable resources to help you when needed.
- Peer support. Your rehab team can likely arrange for you to talk with others in your area that have been where you are and learned how to manage day-to-day activities.
- Brainline.org is an excellent resource for families affected by TBI. It provides a sense of community, and it is a place where you can go 24 hours a day for information, support, and ideas.
- Brainlinemilitary.org targets the unique needs of military families.
- Respite for caregivers. Providing care for someone with TBI can be taxing. You absolutely have to take care of yourself to provide the best care for your loved one. Taking short periods of relief from your duties is one of the best ways to take care of yourself. Participate in activities that allow you to relax and have fun. Do not be afraid to ask for help if needed, and do not refuse help if offered.
- The Caregiver Community Action Network is the nation’s leading family caregiver organization working to improve the quality of life for people who care for a loved one.
- Independent Living Research Utilization offers a list of Centers for Independent Living and Statewide Independent Living Councils throughout the United States. You can contact your nearest Center for information and referral to available resources in your community (including caregiver resources), independent living skills training and peer support.