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Family & Caregivers

"Brain injury affects the whole family."

Immediate Aftermath
Later in the Hospital
Managing at Home
Managing Stress
Long Term Issues
Useful Resources and Information

When someone suffers a brain injury, 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. Information about brain injury and support can make a great difference.

Information for Families (From the booklet Challenges Changes Choices, copyright Brain Injury Association of America authored by Carolyn Rocchio)

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.

You may find it emotionally devastating when visitation restrictions do not allow your constant bedside vigil. But limiting visitation permits the staff to carry out many necessary procedures. As patients stabilize, they are normally transferred to a patient room within the general hospital population where visitation rules are more lenient.

Family members gathered in a waiting room or the patient’s room can put their time to good use by deciding amongst themselves who is most accessible for daily updates from the medical and nursing staff. Start a notebook for this information, collect business cards from the physicians treating your family member, and record questions. This information can then be passed along to other family members and friends.

During these first days, ask family and friends to help with chores you are unable to leave  the hospital to do:

• Banking
• Laundry
• Preparing meals
• Mowing the lawn
• Driving the carpool
• Taking care of small children
• Taking care of pets

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

Brain injury rehabilitation is a marathon and not a sprint.

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.

Family and friends will want updates on how the person is doing. These inquiries can become overwhelming at times to deal with.

Later Days in the Hospital

Once the individual is medically stable, the focus of treatment may shift to more rehabilitative efforts. Most medical problems will occur less frequently, but some may still appear. Some individuals become agitated during this time. 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.

An individual with a brain injury may not be fully aware of the impact of his or her injuries until he or she resumes old routines (personal care, for example). It can be very upsetting for the person when these realizations set in, and behavioral problems can surface. Although this increased insight is a sign of recovery, the family may need to provide greater support and be more vigilant to ensure safety and ease the person through this period. For example, a person with a brain injury may have lost the ability to organize and initiate activities. Carefully organizing your home can help such a person by decreasing frustration and providing choices and motivation.

Discharge Options

With length of stay in rehabilitation units becoming shorter, increased pressure is placed on family members to take on caregiver roles in some fashion. The sooner you begin discharge planning the more options you can investigate. Be proactive – meet with the discharge planner early on in the process. Ask about discharge options. Ask about potential programs the family can investigate.

Managing the Home

(from the Family News and Views Article Impaired Cognition and Behavior)

Brain injury has a very unpredictable course of recovery. Many factors contribute to the ultimate outcome, such as, pre-morbid personality and goal direction of the individual, the length of coma, areas of the brain or brain stem damaged, family support, age at which the injury occurs, emergency medical services (admission to a trauma center vs.nearest hospital), and of course, funding to provide specialized rehabilitation services.    

No family is ever prepared to comprehend the full magnitude of the life changes the injury creates. Most manage from day to day, learning on the go and drawing on reserves to get them through what they hope will be a short term situation with a satisfactory conclusion. Everyone rejoices with the first signs of awakening, thrills at the first attempts to communicate or walk, and feels very confident that rehabilitation can restore functional abilities. However, the physical recovery may be very misleading in some cases and families may not be adequately prepared for the cognitive and behavioral changes that may persist and be difficult to manage.

Once the medical and rehabilitative process is completed, it doesn't mean that your family member will resume life as it was before. Fortunately many, with good support systems will enjoy a near normal life and other family members will perhaps be inconvenience only briefly. However, for those whose family member sustains severe damage to the frontal and temporal lobes of the brain, life may never be the same. Physical limitations are more widely understood and accepted by the general public but few understand and/or tolerate behavior that is the product of severe cognitive impairment. There are no easy answers to managing the long term affects of brain injury, but the best method is a proactive approach. That requires preparation on the part of the family, a discharge plan that provides good information the family can follow, and the cooperation of the individual to agree to the plan. Everyone needs a "what do I do if this happens?" book, but often the most frustrating problems surface after rehabilitation, insurance and the family are all exhausted.

Some common problems experienced by individuals with brain injury are inability to consistently plan and organize the day, recall information in a functional manner, stay on task while bombarded with external stimulation, and in general to make sense of the world in which one lives. Is it any wonder that the response is often negative? Unwanted behavior does not develop over night, nor does it disappear overnight.

It is very important for all families still involved in a rehabilitative setting to ask, "Is my family member likely to have difficulty with cognitive and behavioral issues once reintegrating into the community?" If the answer is yes, make sure that the facility provides practical strategies for managing the behavior to keep things from getting out of control. Also be alert to the fact that undesirable behaviors may develop some months or even years after the injury and still be directly related to the insult to the brain.

It is particularly frustrating for families of children reentering the school system when assuming the educators understand brain injury and will appropriately provide for their child. Unfortunately, nothing could be further from the truth in most school systems. Brain injury is uniquely different from other disabilities and needs to be addressed as such.

The same holds true for adults attempting to return to the job setting only to discover the job is the same but the "employee" is different. The manner in which the family deals with these changes will determine the quality of life for the person with the injury as well as those family members in supportive roles. The amount of time you spend gathering information and preparing to help your family member through the maze of reintegration and possible lifelong support, the more positive results can be expected.

The time spent learning about ways to help your family member through reentry into the community will pay off in easier to manage behavior.  

Most individuals are very happy to come home after rehabilitation, not only is home a safe and secure place but it is often perceived as a place where one will find one's old self. Friends and family are happy but after a period of welcoming friends may soon return to their old routines of school, work, and leisure activities leaving the person with brain injury isolated. Brain damage involving frontal or temporal lobes of the brain resulting in confusion, memory loss, poor organizational skills, disinhibition, poor reasoning skills and judgment can change the individual dramatically and it is very difficult for others to understand these changes.

It doesn't take long for the individual with brain injury to discover that there's no longer the same reasons to get up in the morning, there's no one to hang around with and familiar things just aren't the same anymore. Friends quit coming around, driving privileges are gone, and in general life is a real drag! Boredom can lead to overeating, weight gain, disagreements within the family about anything and everything and a vicious cycle of behavioral deterioration begins.

The goal should be to circumvent this cycle by advance planning. Some suggestions about this planning include:

  1. Learn about your family member's deficits by close involvement in the rehabilitation process. Have a clear understanding about ways your family member's deficits will affect his abilities and ask about compensatory strategies you can implement in your home to lessen the impact of these deficits. Start planning for homecoming as far in advance of discharge as possible.
  2. Have ready the room your family member will be using upon arriving home (many individual's living independently of the family may need to return to the family home, perhaps temporarily, to meet their care needs.) Plan the room arrangement so the individual can function as independently as possible. This may mean that drawers are thoughtfully arranged with stickers on the outside to describe the contents; a divided tray, properly labeled to hold wallet, watch, coins, glasses, etc. placed on the nightstand to ensure that personal items are not misplaced; and a notebook or cue cards available with steps for completing tasks as simple as showering or other personal care routines.
  3. Establish a schedule that includes as much activity as the individual can tolerate without becoming overly fatigued. This may mean an outpatient therapy, schedule, a day activity program in the community or even a volunteer "job." Everyone needs a reason to get up in the morning and something satisfying to look forward to. Many families complain that the individual never wants to do anything. However, the problem may be inability to initiate and plan, so the family should help with planning activities. Deciding on the plan is the first step but reminders, written and verbal, keep the plan in motion. Equally important is the follow-up which may require cueing to help the person "remember" the event. Don't make the mistake of asking, "What did you do last night?" Instead ask, "Did you enjoy the concert last night, tell me about it?" By cueing you are helping the person retrieve the information from long term storage and integrate it into the conversation.
  4. If social problems such as drugs/alcohol were a problem before the injury, they are likely to be a problem afterward. As long as your family member is dependent on the family then the family is in the best position to prevent this from happening. A hard line approach now may make life easier later. It is important to be aware that use of medication, i.e., anti-seizure medication, can be a dangerous combination with the use of other non-prescription substances.
  5. External cueing is very helpful. If the individual is constantly faced with situations in which he has no recall and those around him constantly remind him of his lack of memory, it may eventually cause an erosion of self-esteem. Create some strategies for compensating for this problem by developing lists, post-it notes, or cue cards or any other strategies that help the person feel more independent and less likely to make mistakes and be nagged or scolded.
  6. Structure, structure, structure and consistency! The importance of a structured environment cannot be over emphasized. There's nothing more frustrating and frightening than being an adult and not knowing what you're supposed to be doing. Structuring helps offset some problems by giving the individual a consistent and dependable way of life.
  7. Always check with your physician when behavioral changes occur. Seizures can develop after brain injury and it is not uncommon that they occur some months or years after the injury. They are frequently called "silent seizures" because they do not involve convulsions; however, they often create changes in behavior. Monitor your family member's behavior and note any changes, e.g., random and restless pacing, staring into space, complaints of foul odors or taste changes, and/or hallucinations. These symptoms can indicate seizure activity and warrant testing to determine if there is abnormal electrical activity in the brain which is commonly controlled with the use of anti-seizure medications.

It is not easy but individuals with brain injury can be helped to control behavior and lead socially fulfilling lives. When behavioral problems become unmanageable, families are encouraged to seek outside help, ideally through contact with professionals and rehabilitation facilities familiar with brain injury. Lacking that option, community mental health facilities are alternatives. The family will need to work closely with the professional staff at mental health facilities to ensure that the problems are addressed appropriately. Also contact your state's Brain Injury Association office for further information about cognitive and behavioral problems after brain injury.

Managing Stress

Friends and family may offer to help, but it may seem like more work to figure out what people can do to help, and how to keep track of who is doing what. There are resources such as Share the Care that can allow you to organize chores, tasks so that everyone is on the "same page.  

While the focus of the family often centers on the person with a brain injury, other family members are affected as well. Two articles previously published by the Brain Injury Association look at the effect of a brain injury on the family as a whole

Family News and Views: Brothers and Sisters
Family News and Views: Brain Injury is a Family Affair  

Longer Term Issues

Once the person is home, there will still be many unanswered questions: Will the person be able to return to work or school and when? How will the family regain some sense of "normalcy"? How do the roles in the family change? The stress on a family following an injury is real. Roles may change, financial circumstances may change. Brain injury can be a life changing event. Support and information can help a family in understanding the changes that may need to occur, and to make informed decisions about life with a brain injury. There are many other issues that a family may need to face.  

  • Look on our Community page for links to publications and resources on a wide range of post brain injury issues that families may have to deal with.
  • Visit our Forums, or our blog to read other people's stories.
  • Contact the Brain Injury Association in your state to find out about support groups, and other resources in your state.

Other useful websites for families: 

Family Caregiver Alliance
TBI Guide
TBI Model Systems Fact Sheets
Learn Net
Realistic Hope


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