La vie après une Lésion Cérébrale
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Illness or injury to a family member affects the whole family and those close to them. If the illness is chronic, the usual family roles, routines and responsibilities may be interrupted or changed. Take a few minutes to identify how the roles in your family have changed. What new responsibilities have you added to your daily routine? How have the changes affected your life?
The process of rehabilitation begins in the hospital and continues at home. Outpatient therapy usually lasts considerably longer than inpatient therapy. Members of the health care team will develop rehabilitation goals that optimize the abilities of the person with brain injury. Having realistic goals and expectations for yourself as a caregiver is important throughout the recovery process. Remember that the rehabilitation team is available to answer your questions and to encourage you during the adjustment to life at home with a loved one who has a brain injury.
Providing companionship and emotional support for the person with a brain injury may be necessary, in addition to physical care. Caregivers also may have many other responsibilities, including employment outside the home and caring for the home and children. Being a caregiver can be overwhelming, and adapting to these changes is challenging.
These suggestions may help you as a caregiver and enable you to strengthen your relationship with the person who has the brain injury:
- Ask for help when you need it. Caregivers frequently try to handle everything alone. Expecting too much of yourself may add to the stress. Do not be afraid to ask for help. Find options for assistance such as home health care or respite care.
- Set limits. There are only so many hours in the day and only so many things you can do. Some things can wait.
- Plan something to look forward to each day. Reward yourself for caring.
- Take time away from the person you are caring for. Taking an hour, a day, a weekend or a week away can do wonders to restore your emotional well-being.
- Maintain contact with friends and family to discuss your concerns or have fun.
- Take care of yourself. Caregivers are vulnerable to stress-related illnesses.
- If you are concerned about your health, make an appointment with your physician. Inform the physician about your situation.
- Take time for exercise. Exercise increases stamina, lessens anxiety and depression, improves or maintains muscle tone and strength, and increases self-confidence. These benefits make exercise a worthwhile use of your limited time.
- Learn relaxation techniques such as breathing exercises, meditation, Reiki or progressive muscle relaxation.
- Join a support group. Support groups are an outlet for sharing problems and concerns. People with similar issues understand what you are feeling.
- Keep your sense of humor. Laughter is a great stress reducer because, for a moment, you are not focusing on problems.
Love, affection and sexual feelings are healthy human desires. If these desires are not understood or expressed, confusion, distress and feelings of inadequacy may result. Sexuality involves the expression of male or female identities through sexual actions, attitudes and behavior in relationships. From childhood on, we become aware of sexual differences. We are taught directly and indirectly how to behave with the opposite sex.
The ability to appropriately express these learned behaviors may be lost after a brain injury. The adult with brain injury may not understand when it is appropriate to kiss, hug and touch you or other people.
Addressing your relationship with the person should be done early in the rehabilitation process. You may find yourself in a parent role with an adult person or spouse. You may be perplexed by changes in your partner, who may act differently after the injury. Feelings of confusion, anger, fear, frustration and helplessness are understandable.
Although at first you may feel uncomfortable discussing sexual matters, talking about your feelings with someone you trust may help. The goals of rehabilitation for the person with brain injury include independence, self-reliance and healthy personal relationships. The ability to develop and maintain social relationships may be the most important measure of successful rehabilitation. Therefore, recognizing and discussing concerns about love and sex are important.
Many people have difficulty talking about sex. The closest family member of a person with brain injury is usually the most effective person to help the injured person relearn how to express sexual feelings appropriately. A person with brain injury who cannot recognize sexual cues, may not respond to a partner. The injured person may not initiate sexual activity. You may have to be more direct in sexual communication.
A person with a brain injury may have physical, thinking, perceptual or vision impairments, or seizures that make driving unsafe. Driving laws vary from countries. In some cases, the person with brain injury may be required to pass written and behind-the-wheel driving examinations before resuming driving.
The privilege of driving may be restricted or revoked temporarily, or in some cases even permanently. Talk with your loved one’s health care provider if you have questions about his or her driving ability.
Returning to Work
Can a person return to work after a brain injury? The answer depends on the person and the extent of the injury. A brain injury can cause many changes in behavior, emotions, communication, and thinking skills. Keeping a job may be difficult, even the same job held prior to the injury. Regardless of whether the person with a brain injury returns to work, discovering how best to use talents will make life more rewarding. Paid employment or volunteer or leisure activities may be options.
Work (defined as productive activity) plays a major role in most people’s lives. Work provides a sense of achievement, recognition, responsibility, financial independence, social interaction and structure. Those who return to work after brain injury become generally healthier and have a higher self-esteem than those who do not.
Returning to work after a brain injury depends on:
- Availability of jobs
- Desire to work
- Physical abilities
- Ability to adjust to changes
- Social and behavioral abilities (for example, control of behaviors and getting along with co-workers)
- Thinking and problem-solving abilities
- Self-awareness of deficits and limitations
- Vocational interests and capabilities
- Willingness to receive further training
- The willingness of an employer to adapt the job or workplace to the injured person
Returning to work after a brain injury can be challenging and rewarding. Interests, aptitudes and financial options must be considered.
Returning to School
For children and teenagers, returning to school is important for social and educational growth. At school, in addition to learning, young people find friends and peer support and develop social skills. School also provides a place to monitor children’s intellectual and social growth. Sometimes the effects of a brain injury are not initially apparent in young children but become more noticeable later when thinking and social demands increase at school.
School systems have special programs to help students with disabilities return to school. Most schools have trained special educators. However, not all special educators are familiar with the needs of people with brain injury.For those returning to high school and college, developing specific accommodations can help the person with brain injury be successful in school. In most colleges, an office for students with disabilities assists in assuring that teachers provide such accommodations.
Some common accommodations to assist with learning are:
- Extra time for tests to compensate for slowed thinking or information processing
- Tests given privately in a distraction-free environment to accommodate for difficulties with attention, concentration and increased distractibility
- Placement in classrooms with less noise and distractions
- Tape recording lectures to compensate for attention, concentration and memory problems
- Access to teachers’ or peers’ class notes to compensate for difficulty in dividing attention between listening to a lecture and taking notes
- Assignments provided in writing to compensate for memory and concentration problems
- Providing a place to rest or take breaks to compensate for fatigue and increasing frustration
In many cases, parents and family members become advocates who assure that the student with brain injury receives the necessary services to successfully return to school. Parents and family members also serve as go-betweens to make sure that rehabilitation professionals and school personnel meet to develop a plan for successful return to school.
Recreation and Leisure
Participation in meaningful leisure experiences is essential to the recovery of the person with a brain injury. Most people naturally select certain activities that they enjoy and help them meet some basic needs. People with brain injuries may face barriers to experiencing this kind of fulfillment, including:
- Attitude (some people may not realize the importance of leisure activities)
- Physical disability (they may no longer be able to enjoy the activities they once did)
- Lack of cognitive skills (skills needed to participate in some activities — attention, concentration, initiation, planning, problem solving — may be impaired)
- Interruption of social and/or language skills
- Lack of knowledge (some may not know how to engage in certain leisure activities or how to adapt them so they can participate)
Family members can help by:
- Helping the person identify leisure interests
- Assisting with structuring time and daily schedules so that leisure balances with necessary tasks and activities
- Planning ahead for recreation to keep life interesting
- Investigating community resources (city parks/recreation departments, libraries, churches, and other avenues for leisure options)
Through leisure, basic human needs are met, including:
- Feeling good about ourselves
- Being part of a group
- Competing with ourselves and with others
- Experiencing success
- Laughing and having fun (reducing stress)
- Developing useful skills
- Developing friendships
- Strengthening social relationships
Use of Alcohol and Drugs
A brain injury can affect how people think and manage emotions. If a person with brain injury drinks excessive alcohol, uses illicit drugs or prescription drugs in excess, those substances can further interfere with thought processes and can result in serious damage to the cells and nerves in the brain. Consequently, the effects of brain injury become worse. Family members play an important role in helping the person with a brain injury comply with physician recommendations about using alcohol and drugs.
To provide support, family members must:
- Take substance abuse seriously and avoid thinking of it as being a “phase”
- Help motivate the person to lead an alcohol-free and drug-free lifestyle
- Assist the person in developing plans to cope with situations that have resulted in alcohol and illicit drug use in the past
- Rehearse ways to avoid or react differently to such situations so that future abuse can be prevented.
Rehabilitation professionals strongly recommend that a person with brain injury avoid drugs or medications if recommended by a physician, including alcohol and cigarettes. A rehabilitation psychologist, social worker or chemical dependency specialist can help assess whether a drug or alcohol problem exists. Alcohol and other drug treatment programs are available to help a person with brain injury recover from chemical dependency.
Alcohol and drugs can trigger seizures and disturb:
- Alertness and concentration
- Memory and learning
- Reasoning, planning and problem-solving
- Speech and language
- Motor control
- Social interactions or social behavior
For safety, activity restrictions can be recommended. Avoiding additional brain injury is especially important. When to return to certain activities will depend on the health care provider’s recommendations and on factors such as the person’s balance, strength, reaction time and judgment. The health care provider may recommend that the person not participate for a time in contact sports (such as football or hockey) or other activities that risk another brain injury (such as driving, using power equipment, climbing, rollerblading, downhill skiing, snowmobiling or riding a bicycle or horse).
For safety, be sure the person:
- Uses a seat belt when riding in a motor vehicle
- Follows activity restrictions specified by the health care provider
- Wears a helmet if participating in sports or activities for which a helmet is available
Long term problems
Post-concussion syndrome is something that happens to a few patients after head injury and can cause problems for months or even longer after the injury, even if it appeared to be a mild one. Some people will have on-going problems and life can be very difficult for them and their families. Some people will develop the symptoms immediately others after weeks or months. In some cases the person’s personality may be affected.
Sometimes it is not until the person has returned to work or school that they feel different. They may have memory problems, and forget names, appointments or where they have put things. They may become easily distracted and have difficulty concentrating, planning and organising. They may feel they can’t achieve anything and become depressed. Don’t suffer alone – there are many patients who have gone through this and joining a support group helps.