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Brain Injury Basics
Practical Tips for Family and Friends
Compensatory Techniques
Home Safety Tips
Forget about everything you have heard. Your experience will be different. No two brains, and thus no two injuries, are exactly alike. This is the only absolute, unbreakable rule concerning brain injury.
The brain is the last frontier of medicine. Medicine has made great strides in the journey to understand and treat chronic and acute disease. Cancer, heart disease, diabetes, even HIV are treatable, even manageable disorders. However, disorders of the brain are far behind the medical knowledge curve. It is estimated that only 20% of those who sustained brain injury survived in 1970. At the turn of the century, that figure has risen to 60%. The increased survival rate can be attributed to incredible advancements in the field of trauma medicine. Unfortunately, knowledge about brain rehabilitation has not kept pace with the ability of medicine to save the person who has sustained an injury to the brain. Here are some basic changes that may be apparent in the brain injury survivor. It has been said before, but it bears repeating: Every brain injury is unique. Each person who sustains a brain injury experiences a unique set of problems. These problems can affect physical and/or cognitive and/or behavioral abilities. There is no magic cure for these problems; brain injury can bring about profound changes.
Lack of endurance or changes in stamina
Lack of, or changes in strength
Fatigue
Sleep disorders
Problems with vision such as:
- Diplopia (double vision)
- Variable focus difficulties
- Peripheral vision difficulties
- Sensitivity to light, particularly florescent lights
Olfactory (smell) changes
Gustatory (taste) changes
Decreased coordination
Balance difficulties
Changes in gait
Changes in touch or sensation
Changes in bowel and/or bladder control
Changes in sex drive, impotence
Speech difficulties
Swallowing difficulties
Seizures
Attention, concentration difficulties
Short term memory problems
Difficulties initiating tasks
Difficulties following through on tasks
Problem solving difficulties
Reasoning problems
Slowed thought processes
Time management problems
Lack of insight or perception
Inability to comprehend and follow directions
Academic difficulties
Difficulties in money management
Inability to clearly convey meaning
Inability to understand others
Denial of deficits related to injury or inability to grasp the scope and meaning of deficits
Difficulties managing stressful situations
Sensitivity to over-stimulation
Anxiety
Irritability
Withdrawal, depression
Inability to control anger or temper
Aggression
Verbal outbursts
Impulsiveness
Fear
Lethargy, lack of energy
Inappropriate social interactions
Inability to control behavior in social situations
It is important to remember that this list of symptoms or manifestations is notcomplete. Any survivor may experience few or many of the above manifestations. Every injury is unique. This list reflects characteristics that, unfortunately, are commonly heard about on the BIAC 1-800-955-2443 help line. This list should not be construed as a diagnostic tool.
Here are some practical tips that can help both the survivor and the family member in the acute, or hospitalization stage of care.
The survivor may need help maintaining his/her orientation to time, place, or people. With some survivors, there may be post-traumatic amnesia. It is common with this amnesia for the survivor to interact with family, friends and health-care staff and have no recollection of the interaction. Be patient. There may also be short-term memory difficulties. These are common problems.
Provide a calendar and clock (preferably without a second hand) to help orient to time. Provide familiar photographs of family, friends, pets and familiar places. These will help orient to people and place. A smaller group of family and friends visiting regularly is better than large groups coming at one time. This reduces the possibility of too much stimulation. Alternate between the radio and television at moderate volumes. Play familiar, but calming music at moderate volume. Loud noises may overwhelm the survivor. Speak of familiar people, places, interests and experiences. Take the patient outside when and where possible. Provide different tactile items for the survivor to hold (ice, a furry stuffed animal, course wool, flannel, satin, coffee beans, etc.)
Too much stimulation can be very frustrating for the survivor. Recognize that stimulation is needed and provide that stimulation in moderate doses. Please remember that the survivor is thinking with much slower speed and deficits may be so pervasive that the survivor must constantly think of things that others take as automatic. Avoid concurrent speakers. Avoid too much television. If the survivor experiences too much stimulation, he/she may "shut down" or "short circuit". Other reactions are crying, combative behaviors or "explosive" episodes. If this happens, a quiet environment and rest is very helpful. Try to maintain a calm demeanor and be matter-of-fact and non-judgmental toward the survivor.
This can be extremely difficult for family members. Please, take care of you. Take a break, take a walk, find a quiet place for yourself and rest. Keep the conversation simple.
Simple means uncomplicated, not simple-minded. Please, do not be condescending. Conversation is important to the survivor. Even if he/she is unable to speak, try to keep the social environment as normal as possible. Speak clearly, at a normal tone and volume, and at a normal speed. It may take the survivor more time than usual to process and respond to the conversation. Use short simple sentences. Allow extra time for the survivor to speak. Present one idea at a time. Try to include your survivor in every conversation. Don’t talk down to the survivor; don’t talk at him/her; don’t talk about him/her as if he/she is not in the same room. Remember to look at the survivor when speaking with him/her. The survivor is entitled to every spoken and unspoken sign of respect. Affirming questions are better than negative ones: "Would you like a drink?" rather than "Don’t you want a drink?" Ask simple questions, not questions that require a choice: "Are you tired?" rather than "Would you like to nap or watch television?" Encourage him/her to use appropriate greetings and conversation.
Do not tease, encourage or scold the survivor who responds inappropriately. Speaking may be incredibly difficult. Allow him/her to search for the word he/she wants. Give encouragement and praise if the survivor is successful. Supply the word if frustration is apparent. It is better to give the word than to have the survivor practice mistakes. Support and encourage the survivor’s speech efforts. If he/she begins "I want to…" then seems to loose his/her place in the conversation, repeat the spoken phrase to help him/her remember. Ask the survivor to name things immediately near them; sometimes the survivor will have to repeat after you. Point to familiar objects when you do this: "a glass of water" while pointing to the glass. If the survivor rambles or meaninglessly repeats a word or phrase, gently redirect attention to another activity. Avoid making an issue of this repetition. Please remember that difficulty finding a word does not mean the survivor has lost intelligence. Do not put the survivor on display. "Say it for them" or "show them how you walk" can cause great embarrassment and frustration if the survivor fails at the desired task. Do not ridicule the survivor or show impatience with inaccurate responses or pronunciation. Do not insist that he/she "talk right". No one wants that more than the person who can’t do it.
Ask direct questions that require a "yes" or "no" answer. Be prepared for bizarre, inappropriate language or swearing. This is not uncommon and should be accepted without anger or amusement. Don’t estimate the survivor’s ability to understand: ask if he/she understands. Don’t speak for the survivor unless absolutely necessary. The survivor has a very concrete frame of reference and will take what is said literally. "I’ll be back in a minute," means exactly that to the survivor: one minute. Sarcasm and abstractions are lost on the survivor, and may cause deep frustration. Calm, matter-of-fact, real world conversations are best.
Stay in the real world, the real time. Do not join in fantasies or repetitions. Maintain a respectful, matter-of-fact tone of voice and attitude if the survivor engages in imaginary talk. Validate and gently correct the survivor: "You may think you see Mom in that chair, but I do not see her. She is in Pueblo." Tell the survivor he/she is repeating him/herself, but speak in a matter-of-fact way.
The list below is intended to give survivors and family members a sampling of compensatory techniques available to assist with challenges in memory and executive functioning.
- Conserve energy.
- Write appointments in a daily planner.
- Prioritize, schedule priorities.
- Color code files by topic.
- Keep a pad and pencil near the bed.
- Use checklist, timers and alarms.
- Use phone logs to track calls.
- Book an appointment with self to recharge battery and seek clarification that information is correct. Have a consistent routine.
- Double-check work.
- Allow for additional time if needed.
- Pace self.
- Avoid talking too much.
- Be on time.
- Be orderly to increase proficiency. Clutter impedes and slows efficiency.
- Use gestures to enhance speech.
- Minimize distractions.
- Ask for repetition of instructions, repeat them aloud.
- Ensure that necessary aids are available at all times. (resource notebook, glasses, etc.)
- Encourage participation in activities that nurture the soul.
References: Law, 1997, Brown, 1990 Covey, 1989, Lash and Osberg, 1999,Haddow, Hyde, Hague & Rastok, 1999, and Brown & Dudly, 1989
These suggestions may seem to be common sense, but they are critical in the home of a recently brain injured person. The individual with the recent brain injury may have problems with perception, balance, awareness and any of his/her senses, as well as problem solving difficulties. The survivor may not realize how much he/she has changed. He/she may deny that there has been any change.
The purpose of this information is the prevention of unnecessary second injuries. An individual who has suffered a brain injury is at greater risk for another.
- Electrical cords should run along baseboards or behind furniture. They should not run under rugs, or have furniture placed on the cord. Extension cords should not be used unless absolutely necessary and should be out of the way to prevent tripping over them.
- Emergency phone numbers should be posted on or near the phone; they should be large enough and bright enough for the survivor to easily see. Phones should be within easy reach for the survivor.
- Smoke alarms throughout the house are a necessity, doubly so if the survivor is a smoker. Short-term memory impairment is one of the most common manifestations of the injury. The survivor may not remember that he/she lit a cigarette and just walk away. Kitchen activities may require close supervision. Again, short-term memory is often affected. The survivor, who then goes on to do something else with no memory of the unfinished task, may start a meal on the stove.
- Space heaters, wood stoves and kerosene heaters require extra care and attention. Be sure they are away from all combustibles. Insure adequate ventilation. Read all safety instructions carefully and completely. If heating the house with these devices was previously the responsibility of the survivor, ask a neighbor to help you learn this new skill or do without them until the survivor has progressed in rehabilitation so as to be safe.
- Stepping stools should be removed from the kitchen. The survivor may have balance or coordination difficulties that make it dangerous to climb for an overhead item or cabinet.
- Rugs that are not securely anchored or don’t have a non-skid backing should be removed to limit potential problems for the balance-challenged survivor.
- Stairs and other ‘traffic’ areas should be free of clutter. Remove unnecessary furniture and other objects that may be obstacles for the survivor who is experiencing balance, gait or walking difficulties.
- Bathrooms provide special challenges for the person trying to make the home safe for the brain injury survivor.
- A ground fault interrupt circuit (gfi circuit) provides great electrical safety around water. The survivor may have memory or judgment deficits that make use of electricity around water dangerous.
- Towel hooks and rods help with clutter on the floor and decrease the chance of tripping over towels, robes and clothes.
- Tubs and showers should have a non-skid surface.
- Grab-bars in showers or tubs are a more permanent safety device.
- A portable tub or shower chair provides a stable, safe platform for bathing. These are portable and can be easily removed for other family members’ use of the bath.
- Hot water temperature is an oft-forgotten hazard for the brain injured. There may be a disturbance in the individual’s ability to sense temperature; they are at risk for scalding. Adjust the temperature on the hot water heater to "low" or 120 degrees. Check the temperature on their morning coffee, tea or cocoa.
- Vision may be blurred, double or otherwise disturbed.
- Provide adequate lighting in halls, stairs and where one works or reads. Make sure that the proper wattage is used in light bulbs you replace. Turn the fixture off before a bulb is replaced.
- Secure handrails are necessary on stairs.
- Electric blankets and heating pads are dangerous if the survivor has difficulty-sensing temperature. Consider using a thermal blanket instead of an electric one.
- Power tools can be a danger. Supervise and check frequently until you are absolutely sure there will not be a problem. Impatience, intolerance of problems and forgetfulness may all be manifestations of brain injury, and may lead to further injury.
- Lock up tools that are not used safely. Always be sure of adequate electrical service and cords and grounded plugs. Adequate lighting is crucial as well as a clean, uncluttered and organized workspace.
- Lawn mowers, trimmers, snow blowers and Bar-B-Q’s require careful supervision and should not be used until a competent, non-brain injured individual assesses the safety capabilities of both tool and user. An occupational therapist may be able to help you with this task.
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