We’ve all read the reports of the dramatic increase in the numbers of veterans returning from the war in Iraq with brain injuries. These wounds are not always visible, but they can have enormous effects.
A TBI (traumatic brain injury) may result in mild, moderate or severe changes in one or more areas, including thinking, speech, physical functions and social behavior. The consequences of TBI can be lifelong for some people, while others may be able to recover and resume activities they enjoyed before the injury occurred.
Cognitive changes (or changes in thinking) which can occur due to a brain injury include:
• Shortened attention span
• Memory problems
• Problem-solving difficulties
• Poor judgment
• Partial or complete loss of reading and writing skills
• Language problems, including communication deficits and loss of vocabulary
• Inability to understand abstract concepts
• Difficulty learning new things.
Physical changes that can occur due to a brain injury include:
• Muscle coordination problems
• Full or partial paralysis
• Changes in sexual functioning
• Changes in the senses (hearing, sight, touch, etc.)
• Seizures (also called traumatic epilepsy)
• Sleep problems
• Speech difficulties.
Personality and behavioral changes may be subtle or severe and include:
• Difficulty with social skills
• Inability to empathize with others
• Tendency to be more self-centered
• Inability to control one’s emotions
• Increases in irritability and frustration
• Inappropriate and/or aggressive behavior
• Extreme mood swings
• Depression (individuals with TBI are considered to be at a high risk for depression).
Useful Resources & Services for Families Affected by TBI
Studies show that caregivers of people who have suffered a brain injury may experience feelings of burden, distress, anxiety, anger and depression. If you are caring for a partner, spouse, child, relative or friend with TBI, it is important to recognize how stressful this situation can be and to seek support services.
Services that may be most helpful to you include in-home assistance (home health aides or personal care assistants), respite care to provide breaks from caregiving, brain injury support groups, and ongoing or short-term counseling for caregivers to adjust to the changes that have come as a result of the injury.
You also may need to ask your support system of family, friends and community members for help with your loved one’s care, so that you don’t get burned out. (See Family Caregiver Alliance’s Fact Sheet, Taking Care of YOU: Self-Care for Family Caregivers, for additional tips on taking care of yourself.)
In your role as a caregiver, you may find it difficult to find appropriate and adequate services for your loved one. It is important to know that you will most likely need to be very persistent in your search for help. Use your network of family, friends and professionals, as well as the Internet, to get tips about available resources.
Protection and Advocacy (P&A) System and Client Assistance Program (CAP)
This nationwide network of congressionally mandated disability rights agencies provides various services to people with disabilities, including TBI. P&A agencies provide information and referral services and help people with disabilities find solutions to problems involving discrimination and employment, education, health care and transportation, personal decision-making, and Social Security disability benefits. These agencies also provide individual and family advocacy. CAP agencies help clients seeking vocational rehabilitation.
For more information on P&A and CAP programs, contact the National Association of Protection and Advocacy Systems, Inc. at: www.napas.org or (202) 408-9514.
Traumatic Brain Injury Model Systems
Funded through the National Institute on Disability and Rehabilitation Research, the TBI Model Systems consist of 16 TBI treatment centers throughout the U.S. The TBI Model Systems have extensive experience treating people with TBI and are linked to well established medical centers which provide high quality trauma care from the onset of head injury through the rehabilitation process. See page 8 for contact information.
State Brain Injury Program
Some states have developed programs to assist individuals with TBI. These programs are often called brain injury programs, task forces or advisory councils and are typically part of the state’s Department of Rehabilitation or Health Services. To see if your state has any state-funded TBI programs that can be of assistance, check with the Brain Injury Association of America’s State Affiliate at www.biausa.org (click on “State Affiliates”), or (800) 444-6443. You can also contact the TBI Technical Assistance Center, which provides information about TBI resources in each state.
Social Security Disability Insurance (SSDI) & Supplemental Security Income (SSI)
It is possible that your loved one may be entitled to SSDI and/or SSI. SSDI and SSI eligibility is dependent on a number of factors including the severity of the disability and what assets and income your loved one has. Contact the Social Security Administration to find out more about these programs and whether your loved one will qualify for benefits. For more information on SSDI and SSI, contact the Social Security Administration at www.ssa.gov or (800) 772-1213
Centers for Independent Living (CIL)
Some families have found that it is important to encourage their loved one with a TBI to continually learn skills that can allow them to live independently in the community.
The CILs exist nationwide to help people with disabilities live independently in the community and may have resources to help your loved one reach a goal of living alone. CIL services include advocacy, peer counseling, case management, personal assistance and counseling, information and referral, and independent living skills development.
Excerpted from the Family Caregiver Alliance Fact Sheet on Traumatic Brain Injury. The Fact Sheet is available at no charge online at , or by sending a check for $2.00 to Family Caregiver Alliance, 180 Montgomery St., Ste. 1100, San Francisco, CA 94104.
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