A Guide for Families & Caregivers
Acquired Brain Injury (ABI) is defined as an injury to the brain which is not hereditary, congenital or degenerative that has occurred after birth.
Traumatic Brain Injury (TBI) is defined as an insult to the brain, not of degenerative or congenital nature, caused by an external physical force that may produce a diminished or altered state of consciousness, which results in an impairment of cognitive abilities or physical functioning.
Following a brain injury and the initial phases of acute medical care, many survivors and families are left without a meaningful support system or viable resources. All too often financial resources are exhausted and family members must make extreme sacrifices or settle for less than adequate housing and care to make ends meet. An acquired or traumatic brain injury can result in a myriad of long-term physical and cognitive deficits requiring extended rehabilitation and other specialized services tailored to the individual and family. Just as every human is a unique individual, each brain injury survivor is uniquely affected by their injury. To best meet the needs of a person who sustained a brain injury one should not only determine how the injury has affected the survivor, but also determine the impact on each family member and other loved ones.
Advanced medical technology coupled with improved service delivery has led to an increase in the brain injury survival rate nationwide. Unfortunately the funding ratio for brain injury services has not kept pace with the increased need for services resulting in significant gaps in the continuity of care being currently provided statewide. We hope that the information provided below will help educate and assist the brain injury survivor, family member and caregiver as one navigates their way thru an ever challenging journey.
1. Get in touch with a local brain injury support group: Brain injury support groups can be an invaluable resource for information on a wide variety of topics including respite care, social outlets, specialized medical care, vocational opportunities and community reintegration programs that may be available in your area. Support groups often help survivors of a brain injury and family members better adjust and cope with the diverse experiences associated with community life post injury. For a list of support groups and other resources in your community, contact the Office of Acquired Brain Injury at 512/ 487-3415 or visit the link below: http://www.hhsc.state.tx.us/hhsc_projects/abj/SupportGroups.shtml
2. Become aware of the long-term effects of brain injury: Knowledge is power. Knowing what to expect can often minimize the impact upon the family and assist with better preparations in soliciting appropriate care for a person sustaining a brain injury. The following two booklets provide essential information which will assist the survivor and loved ones during the recovery process: Understanding Brain Injury: A Guide for the Family & Helping Your Loved One After A Brain Injury. Both booklets contain a wealth of information and include possible solutions to variety of situations family members may encounter. Obtain a free copy by writing: The Mayo Clinic – 200 First Street SW – Rochester, MN 55905 or download from the link below:
www.biak.us/sites/default/files/pdf/Understanding-Brain-Injury-for-Families-1.pdf (Understanding Brain Injury: A Guide for the Family)
www.biak.us/sites/default/files/pdf/How-to-Help-Someone-Who-Has-a-Brain-Injury.pdf (Helping our loved one after a Brain Injury)
Also the following websites contain pertinent brain injury information:
|Brain Injury Association of America||www.biausa.org|
|Brain Injury Resource Center||www.headinjury.com|
|Brain Injury Library||www.headinjury.com/library.htm#learn|
|Center for Disease Control & Prevention||www.cdc.gov/injury/|
|Family Caregiver Alliance||www.caregiver.org|
3. Take care of yourself: Taking care of yourself is as important as taking care of your loved one who sustained a traumatic brain injury. Respite care or periodic breaks are essential for maintaining one’s mental and physical health. If short term respite care is not available in your community, explore potential alternatives. These may include relatives, friends or close associates. If your city has a “Mayor’s Committee for People with Disabilities”, find out if they are involved with a respite care program. Partnering with other families or networking with local religious groups to help facilitate the formation of a Respite Care Program is another alternative. Local “Adult Day Care Centers” may also be available for respite opportunities. Taking care of yourself includes learning to relax and participating in entertaining or relaxing events. Implement these in your daily routine. Implementing a daily exercise routine may also prove beneficial. A healthy diet, a structured routine and good sleep habits should also prove helpful for both the brain injury survivor and caregiver. Also obtain a free copy of Caregiving: A Family Guide (237 pages) by writing to: Gray Panthers of Austin – 3710 Cedar Street Box 15 – Austin, TX 78705-1449. Phone (512) 458-3738
4. Carefully explore what resources will be needed to meet the long term needs of your loved one: Families often exert a considerable amount of time and energy locating an appropriate post acute brain injury program, but insufficient attention is devoted to what will happen once their loved one is discharged from a brain injury rehabilitation program. Families should explore exactly what resources will be needed following a projected discharge and more importantly where and how they can be secured. The following are examples of issues that should be addressed:
|* affordable/accessible housing||* provision for special medical needs|
|* medication monitoring||* sustainability of needed therapies|
|* financial oversight needs||* securing transportation|
|* supervision needs||* maintaining employment|
|* maintaining sobriety||* avoiding negative peer pressure|
|* maintaining daily living skills||* constructive use of free time|
Most parents will find that addressing the above issues sooner rather than latter will provide a sense of security for both their loved one and themselves. Otherwise inevitably the issues will emerge and require special attention. In addition the above issues will eventually emerge as parental longevity becomes an issue of concern. By openly discussing the specific long term needs of a brain injury survivor; one can better prepare for meeting those needs after their loved one leaves a brain injury rehabilitation program. In meeting these long term needs a family will need to establish a viable network of support utilizing resources provided by the facility staff/program, the state rehabilitation agency, existing community resources, friends and other loved ones. In similar support of this concept many Indian cultures understood, “It takes a village to raise a child,” or within our context, “It takes a community to provide the services needed by a brain injury survivor.”
5. Determine which medical doctors and/or therapists will be needed when returning to the community: If an individual is being treated by more than one doctor, it is essential that all information involving medical treatment, medical recommendations and prescribed medications be shared with each treating doctor in a timely manner. This includes the use of over the counter medications. Also, each doctor should be informed whenever there are changes made involving one’s medical treatment or changes in medication. Encouraging a dialogue between each treating doctor is highly recommended and could prevent a severe complication from emerging. A person should never START or STOP taking a prescribed medication without first consulting with their doctor.
The Primary Care Physician: In most cases, an individual’s Primary Care Physician will oversee the majority of medical care needed by a brain injury survivor when residing in the community. In most cases a Doctor’s Order will be required to secure the services of a Medical Specialist or Therapist. It is recommended to select a Primary Care Physician with experience treating brain injury to help facilitate better medical care. Upon the onset of a traumatic brain injury, a doctor may place an individual on an anti-convulsant as a precautionary measure to help prevent the onset of a possible seizure. If an individual has not experienced any seizure-like behavior over an extended period of time, then consult with your doctor to determine if the need still exists to continue the seizure medication. Individuals requiring the continued use of any medication over a period of time should maintain routine contact with their Primary Care Physician. If taking a pain medication for an extended period of time your Primary Care Physician may want to refer the individual to a pain management specialist or clinic for an evaluation and/or possible alternative treatment recommendations.
The Neurologist: Most people will routinely require follow-up by a Neurologist following a traumatic brain injury. Once medically stable over sight by your Neurologist will likely be gradually reduced.
The Neuropsychologist: The general rule of thumb is to have an updated Neuropsychological Evaluation conducted once every one to two years while an individual is involved in ongoing rehabilitation. The brain injury survivor and family members should be provided a thorough overview of the evaluation results. Loved ones should assertively advocate for any service or therapy being recommended by the Neuropsychologist. Any Neuropsychological Evaluation over three years old may be deemed outdated by a medical professional.
Cognitive Therapist: A Cognitive Therapist will often work with an individual who has sustained a traumatic brain injury with the primary focus on improving one’s executive functioning skills and help develop effective compensatory strategies. Therapy goals may include (but not limited to) helping improve one’s attention span, judgment, problem solving skills, decision making skills, organizational skills, emotional control, social skills, initiation, time management skills, memory recall and awareness of deficits. Areas of focus may very easily overlap with other treatment disciplines. Treatment objectives should be documented utilizing observable, measurable terms. Prior to initiation of services, each treatment objective should be explained to the survivor of a traumatic brain injury using clearly understood terms in order to promote full comprehension of the expected outcome. Cognitive therapy is quite diverse and may promote the re-learning of a skill, modifying or adjusting a previous skill level, or learning compensatory strategies to help with one’s adjustment.
Outpatient Therapy: If Speech Therapy, Physical Therapy or Occupational Therapy is needed one should explore the various options provided within your community. Carefully review all fees and payment structures in advance and request this information be placed in writing. Try to obtain services from therapists experienced in working with traumatic brain injury. Therapy may also include exercise or training that can be conducted in one’s home environment (often called indirect therapy). In addition home modifications may be recommended to promote one’s level of independence or minimize levels of interference. All home therapy and assistive devices should be periodically evaluated and revised if needed.
6. Explore potential financial support available with your community and state for services needed. Sources for funding health care services may include private insurance, VA Program, HHSC, Texas Worker’s Compensation, Texas Crime Victims Compensation Fund, Trust Funds, Texas Workforce Commission, Protective Services Division, Medicaid, Medicare or private pay. If these options do not exist, then one may qualify for indigent medical care from your local medical assistance program. The quality of care provided by the latter is often equivalent to those found in most medical settings. One will find diversity within the scope of care and associated co-pay requirements within each program so it is important for an individual to carefully explore these factors involving each care provider. Psychiatric services and medication therapy may be available at your local mental health community clinic for qualifying individuals. Many of the larger cities in Texas have “Independent Living Centers,” which provide a wealth of resources, information and referral services and possible case management services to assist an individual in obtaining available community resources. As the type of services and qualifying standards change, it is best to contact both your local and state resource offices to best determine existing program availability. Most program services in Texas are listed with HHSC – just dial 2-1-1 and then specify what type of resource you are seeking. For a free Brain Injury Resource Guide which is routinely updated with pertinent brain injury programs and services please contact Chip Howe by dialing (512) 443-5777.
7. Administering your medication: An individual’s ability to administer their own medication should be determined by the physician prescribing the medication. Monitoring procedures should be provided if an individual is not capable of properly self-medicating. All medications should be stored at room temperature in a secured, locked location when not in use. If an individual is treated by more than one doctor then it is very important that each doctor develops a routine dialogue with each other to review continuity of care and use of prescriptive medications. In addition, each doctor should be made aware of any over the counter (OTC) medication an individual is utilizing. Excluding the use of PRN’s, if a person takes more than one medication a day or takes medication at different times of the day it is highly recommended that these medications be set up in a weekly pill box storage container. One can find these plastic pill box containers in most pharmacies or large retail stores. Select a pill box container that best meets your needs. Example: if you take a medications four times a day (QID) then select a container with four compartments for each day (28 total slots). By using a pill box container one can preset their medications for a week at a time, allows for easy monitoring by others if needed and more importantly serves a noticeable reminder if you are unsure if you had taken a medication or not. If a person forgets to take a medication then doubling the dose is never recommended. Always consult with your doctor or pharmacists if a medication error has occurred. If you or unable to reach your doctor or a pharmacist, then call your nearest hospital emergency room (ER) and ask for advice. Be on the safe side and make that call. Some medications require routine blood level checks and these checks are only requested if a significant need exists to do so. Be aware of any potential adverse side effect whenever a medication dose is changed or a new medication is started. The most common adverse side effects regarding the use of medication includes shaking or twitching, impaired speech or mobility, headaches, a rash, increased heart beat or sweating, or any unusual or atypical type behavior. Immediately report any of the previously listed observed conditions to your prescribing doctor or medical professional. In conclusion the following is always worth repeating: never START or STOP taking a prescribed medication without first consulting with your doctor.
8. Maintaining Socialization: Loss of friends, isolation and depression are common factors following a brain injury. Encouraging an individual to participate in a religious congregation of their choice can assist with community reintegration. Developing an “Activity Preference Checklist” can assist with identifying and participating in activities of interest. If possible caring for a pet promotes social interactions. Many local “Independent Living Centers” offer educational and recreational opportunities. Many cities have community recreational centers. Call your local Mayor’s Committee for People with Disabilities or your nearest Brain Injury Support Group for other possible activities within your community. Check with friends, neighbors and co-workers to find out what activities or events they may know about which are free or have a nominal charge. If appropriate explore part-time volunteer opportunities. Doing anything that’s fun and challenging has rewards such as planting flowers, starting a small garden, star watching, coin collecting, fossil hunting, going for walks or picking up trash in the neighborhood once a week. If you elect to do nothing, you get nothing in return.
9. Transportation: Just as people are different so will be their preferred choice of transport. Make a transportation plan that is safe and easy to follow. Good planning leads to good outcomes. Contact your local transportation authority for available specialized transportation resources. If one elects to drive following a sustained brain injury, securing a Driving Evaluation first is highly recommended. Many of the major rehabilitation hospitals offer this evaluation and frequently provide hands on training to assist in developing compensatory strategies for any lingering deficit. In addition, many of these programs can assist in obtaining the funding needed for any recommended vehicle modification necessary to improve one’s driving capabilities.
10. Vocational Opportunities: If you need assistance in securing meaningful employment and are at least 16 years old, then contact the Texas Workforce Commission for employment assistance. Also internet search engines can be used to expand one’s employment search opportunities. One may also consider starting with a volunteer job prior to seeking competitive employment, which can provide numerous therapeutic benefits. When locating employment it is best that an individual attempt to find a job that most closely matches your interest level with your skill level. In other words if you like the type of work you are doing and you have the skills needed to complete the assigned work, then you will likely do well at that job and be considered for advancement as the opportunity arises.
Chip Howe, M.A.
Mary Lee Foundation Rehabilitation Center