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Challenges, Changes, and Choices: A Brain Injury Guide for Families and Caregivers

Categories: Living with Brain Injury, Being a Caregiver

This article is provided by the Brain Injury Association of America to prepare you for the journey toward recovery. On this page you will find information about the nature and consequences of brain injury; resource information to help with decision making; and practical suggestions about ways to help your family member, take care of yourself, and enlist the support of others.

According to the Centers for Disease Control and Prevention (CDC), nearly 3 million Americans sustain a brain injury each year. For many, the life-threatening nature of the injuries requires immediate hospitalization for extended treatment and rehabilitation. Others may be seen in an emergency department and discharged with little to no information about the life-changing impact the injury may have in the weeks or months ahead. Although this article is designed to assist families and caregivers of persons with moderate to severe brain injury, those whose injuries are categorized as mild may also find beneficial information.

The Immediate Aftermath

The early hours, days and weeks after injury can be very confusing. You are immersed in the world of the intensive care unit (ICU) with its unfamiliar lifesaving equipment and techniques as well as different medical professionals. A “good day” of progress may be followed by a “down” day. Setbacks are common and do not necessarily imply a permanent reversal.

Family members gathered in a waiting room or the patient’s room can put their time to good use by assigning responsibilities, such as calling loved ones or updating an informational blog on the status, taking notes, and communicating with the treatment team. Start a notebook for this information, collect business cards from the physicians treating your family member, and/or use your cellular phone to record questions. This information can then be passed along to other family members and friends. During these first days, it is worthwhile to ask trusted family and friends to help with chores and daily tasks, like banking, preparing meals, caring for children, looking after pets, etc...

The person with the brain injury may need help for some time to come - and so may you - so look after yourself.

  • Get enough sleep
  • Eat properly
  • Renew yourself in whatever way is meaningful to you

You will need your health and emotional well-being as your family member with the injury moves out of the critical phase and you become more involved in his or her rehabilitation. When you visit your family member, even during an unresponsive stage, talk about current events, friends, family, and details about when, where, and why he or she is hospitalized. Reassure him or her that everything is being done to help. Meanwhile, every member of the immediate and extended family will cope with the event in his or her own way. Some will choose to immerse themselves in the day-to-day struggle, while others may be uncomfortable even visiting. It is important to respect the others’ feelings and to remember that, given time, each person will develop coping mechanisms that work for him or her.

During this time in the hospital, it is also important to gather the information you will need to manage insurance, determine eligibility for various governmental benefits, and file any recommended litigation. Make it a point to organize your loved one's documents and information, such as:

  • Social Security card
  • Insurance card
  • Insurance policies
  • Accident reports (if applicable)
  • Driver's license
  • Birth certificate
  • Work and school records
  • If your loved one lived on their own, look for utility bills, banking information, etc.
For more information about what to expect during this phase, click here.

Later Days in the Hospital

Once the individual is medically stable, he or she will likely be moved from the Intensive Care Unit to a Step-Down Unit, where the focus of treatment will shift to rehabilitative efforts. The most specialized physicians will no longer be involved in the care of the patient as his/her condition improves. Some of the individual’s mannerisms and characteristics will spontaneously begin to re-emerge and therapists will evaluate and work on functions lost to the injury. During this time, many patients become agitated. This can be very frightening for family members, but in fact agitation in this early period is a positive sign that the brain is beginning to recover. Similarly, do not be discouraged if physical recovery seems to be proceeding more rapidly than intellectual recovery. It’s hard to be patient, but it may be some time yet before cognition can even be evaluated.

Setbacks will become less frequent as your family settles into a routine of visitation and hopefulness. Be prepared to speak with hospital social workers, insurance case managers, rehabilitation evaluators, and representatives from state agencies or trust funds about benefits and payment of claims, eligibility for state-provided programs, legal issues, and discharge options. 

Reach out to the Brain Injury Association of America (BIAA) and the BIA affiliate in your state for important information and educational materials.

The Rehabilitation Phase

Following acute hospitalization and early rehabilitation, individuals with brain injuries will be discharged into specialized rehabilitation programs to continue the recovery process. Others who have recovered more significantly may be referred to transitional programs to fine-tune cognitive and vocational skills before returning to the community. Despite changes to health plan legislation and efforts to increase access to care, some may return to the community without follow-up services. It is important to be diligent and vigilant in the quest to get your loved one the treatment and rehabilitation he or she needs.

During the rehabilitation phase, medical issues are no longer the primary concern. More emphasis is placed on cognition (the way a person interacts with his/her environment). The goals are to build skills and prepare for the future. Whether that means returning to school, work, the family home, a care facility, or another setting, the aim is to help the individual enjoy the highest possible quality of life. A neuropsychologist will usually do an assessment at this point to evaluate what abilities the individual with a brain injury has preserved and what deficits he or she now has. This noninvasive, task-oriented evaluation helps the individual with the injury and the family better understand how the injury has affected intellectual functioning, and provides valuable information about strategies to compensate for deficits. It indicates the kinds of support the family member will need. It is vitally important that the professional present this information to the person with a brain injury and explain the results of the assessment to his/her whole family. This information is the basis for treatment and future plans.

Community Living

Everyone who survives a brain injury ultimately returns to a community, but many factors (including funding sources, care requirements, and support systems) will determine the most appropriate community setting. Many people with brain injuries return to their homes, but depending on their levels of recovery their needs can vary dramatically. To begin with, common long-term physical problems may include:

  • Hemiparesis (paralysis of one side of the body)
  • Visual impairments
  • Fatigue
  • Loss of taste and smell
  • Muscle spasms
  • Slowness or difficulty with speech

When physical issues and mobility problems persist, home modifications may make it easier for you to provide necessary care. You can get information about home modifications from rehabilitation centers, state agencies, and websites (such as those listed in the resource section). Funding sources for home modification vary from state to state but may include settlement payments, health insurance, state trust funds for brain injury, and other state programs (such as vocational rehabilitation, Medicaid, or Medicaid waivers). Typically, persistent cognitive deficits are more disabling over the lifetime of the person with a brain injury than are physical problems and require more family support and monitoring. Some common cognitive problems include:

  • Memory loss (more often affecting short-term than long-term memory)
  • Difficulty recognizing one’s cognitive deficits (difficulties in processing information or applying knowledge)
  • Poor judgment
  • Problems with alertness, attention, and concentration
  • Difficulty in initiating, planning, and completing tasks
  • Reduced ability to process information
  • Confusion
  • Spatial disorientation (where one’s perception of direction does not agree with reality)

A person with brain injury may also have social or mood problems that limit his or her interactions with others:

  • Anxiety and depression
  • Impulsiveness and loss of inhibitions
  • Emotional lability (mood swings)
  • Egocentricity (self-centered)
  • Agitation or outbursts
  • Sexual dysfunction
  • Difficulty maintaining relationships
  • Feelings of loneliness