Caregiver Support

 

Caregiving

When someone suffers a Traumatic Brain Injury (TBI), the entire family is affected. 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 close 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 will probably find that it can be difficult to find appropriate and adequate services for your loved one. It is important to know that you will most likely need to be persistent in your search for assistance. You should use your network of family and friends, as well as professionals, to get tips about available resources.

Social Security Disability Insurance & Supplemental Security Income

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. You should contact the Social Security Administration to find out more about these programs and whether your loved one will qualify for these 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. For more information on the CIL system, contact the National Council on Independent Living at www.virtualcil.net/cils or (703) 525-3406.

Caregiver Tips

TBI can alter the lives of the entire family, and caring for a TBI patient can be a long-term, even lifetime, commitment. For that reason, learning to manage the stress and frustration of caring for a TBI patient is vitally important. If the caregivers cannot take care of themselves emotionally and physically, they will be not be equipped to provide effective care to the TBI patient.

Although in some cases it may seem difficult or impossible, especially early on after the injury, the following tips can be helpful:

  • Remember that your friend or family member suffering from TBI often cannot control their behaviors or emotions.

  • Reward yourself periodically with short breaks.

  • Take advantage of all available support resources.

  • Exercise to help relieve stress, improve sleep, reduce depression and increase your energy level.

  • Get plenty of sleep whenever possible.

  • Don't be afraid to ask for help.

  • Remember to take advantage of the resources available to you, such as family and friends offering help, local support groups, and web-based support networks.

  • Take time to be alone and clear your head.

  • Make a to-do list of tasks and put them in order of importance. This can reduce feelings of being overwhelmed and aid in helping others to help you.

  • Talk about your feelings to family and friends.

  • Do not isolate yourself.

  • Realize that feelings of sadness and frustration are normal.

  • Educate yourself about TBI.

  • If it’s right for you, use prayer, meditation, and other types of spiritual support.

  • Try relaxation activities such as yoga, warm baths, reading, listening to music, or just spending time with friends.

  • If necessary, ask your doctor about whether or not medications to treat anxiety or depression might be right for you.

Resources

Do you need to apply for in-home care services for adults?

Family Caregiver Alliance
785 Market Street, Suite 750
San Francisco, CA 94103
(415) 434-3388 phone
(800) 445-8106 toll free
Website: www.caregiver.org
E-mail: info@caregiver.org

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.  FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.

Brain Injury Association of America
8201 Greensboro Drive, Suite 611
McLean, VA 22102
Helpline: (800) 444-6443
Helpline e-mail: familyhelpline@biausa.org

A national advocacy and awareness organization which develops and distributes educational information about brain injury and resources, legal rights and services. The Association provides a variety of information regarding brain injury and has state affiliates throughout the U.S.

National Disability Rights Network
National Association of Protection and Advocacy Systems, Inc.
900 Second Street, NE, Suite 211
Washington, D.C. 20002
(202) 408-9514

Find solutions to problems involving discrimination and employment, education, health care and transportation, personal decision-making, and Social Security disability benefits.

Social Security Administration
Office of Public Inquiries
Windsor Park Building
6401 Security Blvd.
Baltimore, MD 21235
(800) 772-1213

Information about disability benefits requirements.

Centers for Independent Living (CIL)
National Council on Independent Living
1916 Wilson Blvd., Suite 209
Arlington, VA 22209
(703) 525-3406

Clickable map to help you locate the Independent Living Center in your state.