What You Need to Know
- Brain injury is a life-altering event for the individual with TBI and the entire family.
- Although there are some common predictors, the course of recovery will be different for each individual.
- You may experience an emotional roller-coaster from day to day as the situation changes: happiness, sadness, anger, hopefulness, bargaining, despair, and overwhelming fatigue.
- Don’t become discouraged when repeated infections, such as pneumonia, occur as the body struggles to repair itself. These are usually managed medically with success.
- Immediately contact the Brain Injury Association of America (1.800.444.6443 or www.biausa.org) and its affiliate in your state. This is a time to learn all you can to help your family member; don’t be afraid to ask questions.
- Once the crisis stage has passed and therapy begun, ask the physical therapist to show you how to do range-of-motion exercises for your family member. It is not only helpful for preventing contractures but it enables you to have a positive impact while at the bedside.
- In the event there is no insurance coverage, arrange a meeting with the social work department to learn what options are available to assist your family member.
Locating Appropriate Rehabilitation
- Have a clear understanding of insurance coverage, limits, dollar amounts, and what it will and will not cover.
- It may be necessary to travel to find specialized rehabilitation, but not all professionals are familiar with rehabilitating people with TBI.
- When exploring facilities, ask that you be given the names of at least two families who have used the facility in the past year. Call those families and ask the following questions:
- Does the facility have a dedicated TBI team?
- Is the family welcome during therapy sessions and encouraged to be part of the team?
- Are short- and long-term goals established and were those goals met? If not, why?
- What is a typical day schedule?How many hours is your family member actively engaged in therapy or recreational activities?
- Was an easy-to-understand discharge plan developed and explained to the family?
Returning to the Community
- Implement the discharge plan promptly upon discharge.
- Utilize community support groups for ongoing inspiration and socialization.
- Understand ways to effectively work with the educational system to insure your child’s needs are properly met. Make sure to educate yourself about the Individuals with Disabilities Education Act (IDEA).
- If applicable, the Americans with Disabilities Act (ADA) prevents discrimination in housing and employment.
- Services provided by Vocational Rehabilitation in your state can provide assistance to evaluate your readiness to return to work and/or train you for a different job.
- When return to work is not an option, help your family member find activities, day programs, sport gyms, and ways to engage in community events that promote wellness and quality of life.
Changes in Cognition and Behavior
- Make sure you understand your family member’s preserved abilities and deficit areas of the brain which impact on ways he or she thinks and learns. This will help you help your loved one foster independence while insuring safety.
- Provide your family member with clear identification at all times, perhaps a Medic Alert ® symbol.
- Problems controlling behavior are common to some people with frontal/temporal damage to the brain. It can also surface during recovery as the individual becomes more of aware of his or her changes and how it affects the ability to return to the previous lifestyle.
- Structuring the environment can significantly help reduce frustration and enable better behavioral control.
- It is easier to change the environment than to change the behavior of the individual.
- Make sure all family members interacting with the individual are aware of and reinforce the structure.
- Behavioral management is mostly common sense but should it become dangerous or unmanageable the family should seek professional intervention.
Lifelong Living Issues
- Seek legal advice in order to preserve government benefits for recipients of Supplemental Security Income (SSI) and Medicaid by insuring all settlement or inherited funds are placed in a Special Needs Trust. Funds in excess of $2,000 cannot be in the name of the person with brain injury.
- Insure the financial and personal safety of your loved one through legal guardianships, conservatorships, medical surrogacy, and/or power of attorney.
- Make sure the family planners and the individual understand ways returning to work affects government benefits, including Social Security Disability recipients. Any change in status must be reported to avoid penalty and/or loss of benefits.
- Develop a plan for services and family oversight well in advance of its need. Make sure all members of the family with future responsibilities are aware of and willing to assume that responsibility.
Grieving the Loss
- Brain injury often changes an individual’s personality and familiar characteristics. This requires adjustment from family members.
- In many cases, families must learn to love a new and different person with a dependency that wasn’t a problem before the injury.
- Many families find the more they know about TBI, the less difficult it is to adjust to these changes.
- Relying on religious affiliations and spiritual guidance is helpful to many.
- Time often provides healing and leads to acceptance of what may not be subject to change.
- Respite is helpful but often illusive. However, arranging to get away from 24/7 responsibilities for even a few hours can be reenergizing.
Carolyn Rocchio is a nationally recognized advocate, author, and speaker in the field of brain injury. She developed her expertise as a result of a 1982 auto crash in which her son sustained a severe traumatic brain injury. He was 22 at the time. He is now in his late 40s. He still lives at home. Written by Carolyn Rocchio for BrainLine.