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Getting Help with Caregiving

Getting Help with Caregiving

Tracy
Okay, our next topic is one of the key elements of being an effective caregiver at home. Now I know that I’ve mentioned this several times over the past few weeks, but I can not stress enough the importance of getting help. Whatever your situation, whatever the condition of your loved one with TBI, you will need help from friends, from family, from neighbors, from all kinds of other people. The first step is to find your helpers. Okay.

Megan
I have to admit that I’m not very good at asking for help.

Tracy
You’re not alone, Megan. Many people find it really tough to ask for help. But think about this. I mean if the tables were turned, and someone you knew needed help, wouldn’t you help them if you could?

Megan
I would.

Tracy
Okay. I’ve found that when people offer to help, they usually mean it. So take them up on the offer. You know, Megan, if it’s too difficult for you to ask for help, or if you just don’t have the time, ask a friend or a family member to get the word out for you.

But do keep in mind that it’s important that you feel comfortable with the members of your home care team, in terms of their capabilities, and what level of responsibility you’re comfortable giving them.

There are some specific tips for building your home care team you’ll find that in your Guide for Caregivers. And you’ll also find a Home Care Volunteer form that should come in handy.

Okay, so now you’ve identified your helpers. That next step is to make a list of tasks. Now remember these are not just responsibilities relating to the care of your loved one with TBI, but things that lighten the load for you and other members of the family. And after you’ve made the list, determine whose skills best match each of the tasks. Now if you ask your children for help, make sure that the tasks you give them are age-appropriate. 

Michelle
I used to always just do things myself, but since Tom got hurt, I’ve gotten better at asking other people to help. I just don’t have the time that I used to, and with Tom coming home, I know I’ll have even less time.

Tracy
I’m afraid you’re right, Michelle. As Tom makes that transition home, you’ll find that both your time and your emotional energy may be in short supply. That’s why time management is so essential.

There are times you may feel there’s more to do than you have time and energy for, so you’ll need to do some prioritizing. Decide which tasks need to be done right away and which tasks can wait until later. That way, you can focus on what absolutely needs to be done, and then you can delegate other tasks to your Home Care Team. 

Okay, so our next topic is home health care, which is when a qualified aide, a nurse, or a therapist provides care for your loved one right there in your home. For example, an aide might assist with bathing and hygiene. A nurse might provide skilled care like changing dressings or reviewing medications.

Carl
Yeah, when Sam first came home, his home care nurse and physical therapist were at the house fairly regularly.

Tracy
Physical therapists, speech therapists, occupational therapists they’re often an important part of that recovery at home. Your case manager can help you determine if you’re eligible for assistance with home health care from TRICARE, or from the VA.

Another valuable resource for caregivers is called respite care. You know, no matter how organized you are, over time, those demands of being a caregiver can be exhausting. It can be really important to take a break, and respite care is one way to do that. It offers a break from the demands of caregiving, and it allows you to get things done and to take some time for yourself.

Respite care is available in a variety of forms. In some cases, a companion or a sitter might provide some respite at home. Respite can also be provided outside of the home in an adult day care situation or assisted living or a nursing facility. It can range from just a few hours per day, a week, or short-term placements in residential facilities.

Megan
Are respite programs expensive?

Tracy
Well, that depends on the program, and the benefits you’re eligible for. TRICARE provides respite care for homebound service members on active duty, if they meet specific criteria. But your care coordinator can help you find programs that can help cover any costs.
 
Information on respite resources can also be found in The National Resource Directory. Military OneSource’s Wounded Warrior Project and other programs are also available to help you find the right respite care for you and your family.

Julie
Our case manager told us about the Exceptional Family Member Respite Care Program. It turns out that we qualify. 

Tracy
Oh that’s great, Julie. Another option that some caregivers consider is temporary or more permanent residential care for their family member with TBI. There are different types of residential facilities, ranging from assisted living to those that provide 24-hour skilled nursing care.

If you explore the possibilities of residential care, be sure to check with your case manager, your VA liaison, and your military liaison for the benefits that are going to be available to your family. But you’ll find more information and resources about benefits in your Guide for Caregivers.

Look I know that I have given you a ton of information, and it’s a lot to process. But you can review the material in your Guide. And next week we’ll continue talking about that transition home, planning for the future. And in the meantime, hang in there.

You’re doing a fantastic job. Thanks for coming. And I look forward to seeing you next time! Okay have a great week.

Organizing Caregiving Help

Here are some steps to consider in organizing your home life:

  • Identify family, friends, or those in the community who can assist you in the home.
  • Ask a friend or adult family member to assume the role of coordinating the Home Care Team. This will take a load off your mind, even if it is short-term help. You can work together to get the outside help you need. 
  • Outline your tasks. Not just tasks to take care of your service member/veteran with TBI, but tasks that lighten the load for you and other members of the family.

Don’t feel like you need to do everything.

What Needs to be Done?

Your new “normal” day will now consist of your usual everyday tasks, plus the care and treatment tasks for your family member with TBI. These care and treatment tasks may take up much of your time. Your Home Care Team may be able to help you with many everyday tasks and possibly some of your family member’s care tasks. A possible listing of tasks appears below. If you ask your children for help, be sure the tasks you give them are age-appropriate.

Creating your Home Care Team
  • Bring family members and friends together, and request their help in caregiving.
  • It is important to accept help because it’s not likely that you can do it all yourself.
  • If you do not have time, have a family member or friend help you organize your Home Care Team.
  • If possible, ask your family member with TBI which people he or she would like involved.

How to Ask for Help

Some people find it really tough to ask for help. If that’s you, put yourself in the shoes of a family who needs help. You would most likely be willing to help them if the tables were turned. So, tough as it may be, let them help you. If you’re too stressed to even think about organizing others to help, ask a friend to take on this role.

Tips for asking for help from others:

  • Write down the names of those who offer. Use the Possible Home Care Volunteer form to keep track of possible volunteers. 
  • Make a list of everyone close to you and your service member/veteran who can be part of your caregiving team.
  • Make sure word of the injury gets out to any groups, social organizations, and faith organizations to which you and your service member/veteran belong.
  • Gather lists of names, phone numbers, and e-mail addresses, and add these names to your list.
  • Check into organizations that specialize in helping: 
    • America Supports You/U.S. DoD Community Relations www.OurMilitary.mil
    • Faith in Action National Network www.fianationalnetwork.org
    • Heroes to Hometowns www.legion.org/veterans/h2h/about
  • Once you have a list of names, call or create an e-mail group based on your list of names to invite others to help.
  • If you do not have a computer or don’t know how to use one, ask a friend who is tech savvy to help you send out a group e-mail.
  • Keep a large calendar near the phone. As you schedule others to help, jot down their names and the tasks they will do. Do not rely on your memory.
  • Ask for specific help. For example, ask someone to go grocery shopping or come over and spend time with your service member/veteran while you go out to do something for yourself.

Coordinating Your Home Care Team

  • Consider holding a meeting for all Home Care Team members to discuss the specifics:
    • issues regarding the injury and your family member’s needs
    • current needs of your family member with TBI and the rest of your family
    • the roles or tasks each team member can take
    • exchange of contact information
    • members’ availability and tasks they are willing to do (write these down)
    • identification of a team leader to make phone calls to team members during emergencies or to re-organize schedules
  • Invite potential Home Care Team members to the hospital or rehabilitation center to learn more about TBI and your family member’s specific needs.
  • Manage Home Care Team schedules on a master calendar (keep this in your home).
  • Have an easily visible list of important information: 
    • location of pharmacies 
    • grocery stores 
    • medical information
    • list of phone numbers of people to contact in an emergency
  • Have some cash available for helpers in case of emergencies, an extra set of house keys, and a spare set of vehicle keys.

Create Routine in Tasks

  • Set up chore lists, schedules, meal menus, grocery lists as things run out, etc.
  • Create and document routines. You relieve yourself of having to constantly make decisions that take up time and emotional energy.

Time Management

There may be more to do than you have time and energy for. To help manage your time, the following will help you prioritize:
  • Decide which tasks need to be done right away and which tasks can wait until later.
  • Prioritizing allows you to focus on those tasks that absolutely need to be done. Delegate others to your Home Care Team members.
  • You can do the urgent and important tasks. Schedule your Home Care Team members to do the “not so urgent” important tasks.

Time Off/Respite Care

The demands of being a caregiver may cause many challenges. Respite, or time off, care helps both the caregiver and service member/veteran in living with brain injury. Respite care is a valuable resource to you and your family member. Respite care offers a break and allows you time for yourself. A companion or sitter may provide respite at home. Respite may be provided outside of the home in an adult day care or assisted living or nursing facility. It can range from a few hours per day, a week, or short-term placements. Day Rehabilitation Programs may help your family member remain in the home. These programs may also provide meaningful, engaging, structured activities during the day while you go to work outside the home.

Respite services for persons with TBI are generally supported by government grants and contracts, nonprofit agencies, Medicare, Medicaid, and through self-pay (most often sliding scale fees). Many VA Medical Centers offer respite care and day programs.

TRICARE provides respite care for homebound service members on active duty who meet the following criteria:
 

  • their conditions or injuries make them unable to leave home without taxing effort
  • they need more than two interventions during the eight-hour period per day when the primary caregiver would normally be sleeping

For these individuals, TRICARE provides a maximum of eight hours of respite per day, five days per week. This benefit is retroactive to January 1, 2008, and has no cost shares or co-pays. For more information, consult www.tricare.mil.

The National Resource Directory www.nationalresourcedirectory.org can direct you to respite programs. Your religious community, local social service agency, local chapters of Easter Seals, the local mental health agency, military service organizations, veterans service organizations, and Military OneSource’s Wounded Warrior Project are all organizations that can help you find the right respite care for you.

Ask your Point of Contact/case manager about the Exceptional Family Member (EFM) Respite Care Program, and how to qualify. More information can be found at www.MyArmyLifeToo.com and www.militaryhomefront.dod.mil.

There are many organizations that have respite care.  This list may be useful:

Exceptional Family Member (EFM) Respite Care Program

Army
  • 40 hours of respite care per month per EFM 
  • Parents select respite care worker 
  • Monthly Respite Care Newsletter: www.MyArmyLifeToo.com

Navy

  • Goal to assist sailors by addressing the special needs of their family members during the assignment process
  • Navy EFMP Coordinators are located at Navy medical treatment facilities. Their role is to refer to the Fleet and Family Support Center for community assistance
    • Special medical, dental, mental health, developmental or educational requirements, wheelchair accessibility, adaptive equipment, or assistive technology devices and services www.militaryhomefront.dod.mil
Marines
  • 40 hours/month 
  • Care can be provided by
    • Installation CDC 
    • FCC Home 
    • Visiting Nurse Service 
    • Family member 
    • Neighbor
National Association of Child Care Resource & Referral Agencies (NACCRRA)
  • Partnership Program with Marine Corps EMFP Respite Care 
  • 40 hours/month of free respite childcare
  • 10 participating bases
Air Force Aid Society Respite Care Program
  • Respite Certificate issued with number of hours of respite over three-month period 
  • Services are re-evaluated quarterly 
  • 4-6 hours/week – average 
  • Family identifies care provider 
  • Will not reimburse for a relative to provide care

Home Health Care

Home health care is care for your family member with TBI from a qualified aide, nurse, and/or therapist in your home. You may be eligible for assistance with home health care from TRICARE, the Department of Veterans Affairs, or Medicare. If not, you may choose to pay out of pocket or use other health insurance your family member may have.
 

  • There are many professional agencies that offer home health aide services; if you are eligible for government assistance, you may need to use an approved agency.

If you use an agency:

  • You may pay more per hour, but the agency assumes the employment responsibilities. It bonds and certifies the home health workers.
  • It also provides substitutes for sick days.

If you choose to hire privately:

  • The advantage is that you can usually pay less per hour for help.
  • However, this means you are an employer and must adhere to all employment laws, including payroll taxes and Workers’ Compensation insurance. Your state Employment Development Department will help you set up the necessary paperwork.

What to do if Caregiving is too much?

It is helpful to know yourself and your limits. Your back-up plan may include finding temporary or more permanent residential care for your family member with TBI. Discuss quality of life issues with your family and health care professionals. Your choices may include:

  • Give others permission to care for your loved one. 
  • Seek assisted living facilities and board and care homes—for those who have difficulty living alone but do not need daily nursing care.
  • Consider nursing homes, also called skilled nursing facilities—for individuals who need 24-hour nursing care and help with daily activities. Skilled nursing care can also be provided at home by nurses you hire.

Check with your case manager(s), VA liaison, and/or military liaison for residential care benefits that may be available to your family member with TBI.

Many organizations will assist service members/veterans and families in paying for additional costs. Talk with your case manager to help learn more about this. Learn more about residential facilities from this fact sheet from the Family Caregiver Alliance: caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1742.

Glossary

A-D   E-H   I-L   M-P   Q-Z

Absence Seizures – A non-convulsive generalized seizure when a person may appear to be staring into space with or without jerking or twitching movements of the eye muscles. These seizures may last for seconds, or even tens of seconds, with full recovery of consciousness and no confusion. People experiencing absence seizures sometimes move from one location to another without any purpose.

Abstract Thinking – Being able to apply abstract concepts to new situations and surroundings.

Acceleration – To increase speed and/or change velocity.

Alopecia – A condition of a loss of hair or baldness.

Amnesia – A loss of memory. Amnesia can be caused by brain injury, shock, fatigue, repression, illness and sometimes anesthesia.

Angiogram – A procedure in which a dye is injected through a thin tube into a blood vessel. Special x-ray pictures are taken, allowing your health care provider to view the blood vessels of the brain, heart or other part of the body. Also called an arteriogram for arteries or venogram for veins.

Anorexia – A loss of appetite, especially when prolonged over time.

Anosmia – The decrease or loss of the sense of smell.

Anoxia – Absence of oxygen supply to an organ.

Anoxic Brain Injury – Injury to the brain due to severe lack of oxygen. This usually happens when blood is unable to flow to the brain due to certain injuries,bleeding, or cardiac arrest.

Apraxia – The loss or impairment of the ability to perform complex coordinated movements despite having the desire and the physical ability to perform the movements.

Arthralgia – Joint pain or stiffness in a joint.

Ataxia – The inability to coordinate the movement of muscles. Ataxia may affect the fingers, hands, arms, legs, body, speech, or eye movements.

Axons – Also known as nerve fibers, an axon is a long, slender projection of a nerve cell, or neuron, that conducts electrical impulses away from the neuron's cell body or soma. Axons are the primary transmission lines of the nervous system.

Basal Ganglia – The deep brain structures that help start and control voluntary movements and postures.

Bipolar Disorder – Also known as manic-depressive illness, bipolar disorder is a brain disorder that causes unusual shifts in a person’s mood, energy, and ability to function.

Blast Injuries – Injuries that result from the complex pressure wave generated by an explosion. The explosion causes an instantaneous rise in pressure over atmospheric pressure that creates a blast over pressurization wave. Injuries to organs surrounded by fluid, such as the brain and air filled organs such as the ear, lung and gastrointestinal tract are common.

Brain – The main organ of the central nervous system (CNS). It is divided into the cerebrum, brainstem, and cerebellum. The brain regulates virtually all human activity.

Brain Stem – The lower extension of the brain where it connects to the spinal cord. Neurological functions located in the brainstem include those necessary for survival (breathing, heart rate) and for arousal (being awake and alert).

Cerebellum – The portion of the brain (located in the back) that helps coordinate movement.

Cerebral Hypoxia – The inadequate oxygen supply to brain tissue. Mild or moderate cerebral hypoxia is sometimes known as diffuse cerebral hypoxia. It can cause confusion and fainting, but its effects are usually reversible.

Cerebral Spinal Fluid – A colorless fluid that is found around and inside the brain and spinal cord, offering some protection and cushioning the brain.

Cerebrum – The largest part of the brain. It is divided into two hemispheres, or halves. It controls motor, sensory, and higher mental functions, such as thought, reason, emotion, and memory.

Chronic Subdural Hematoma – An "old" collection of blood and blood breakdown products between the surface of the brain and its outermost covering (the dura).

Closed Head Injury – Injury to structures within the skull or the brain that do not result in an opening in the, such as a direct blow to the head or a blast. Injuries may range from a mild concussion to potentially fatal.

Coma – A state of unconsciousness from which the person is not aware of the environment nor able to perform voluntary actions.

Computerized Axial Tomography, or CT or CAT Scan – A painless procedure in which x-rays are passed through the affected area at different angles, detected by a scanner, and analyzed by a computer. CT scan images show bones and blood collections more clearly than conventional x-rays. The computer can combine individual images to produce a three-dimensional view.

Concussion – A blow, jarring, shaking or other non-penetrating injury to the brain which causes a temporary decrease in normal brain activity.

Consciousness – The state of awareness of the self and the environment.

Contusion – A bruise. In terms of brain injury, a contusion refers to bruising of the brain tissues.

Coup-Contrecoup – An injury to the brain that occurs when an impact or violent motion brings the head to a sudden stop, causing injury to the impact site and the opposite side of the brain. This is also known as an acceleration / deceleration injury.

Cranium – Skull.

Deceleration – To reduce speed or go more slowly.

Diffuse – Widely spread.

Diffuse Axonal Injury, or DAI – Widespread injury of large nerve fibers (axons covered with myelin).

Diffuse Brain Injury – Injury to cells in many areas of the brain rather than in one specific location.

Diplopia – Seeing two images of a single object; double vision.

Dura Mater – The outermost of three membranes protecting the brain and spinal cord. It is tough and leather like.

Dysarthria – Difficulty in forming words or speaking them because of weakness of the muscles used in speaking. Tongue movements are usually labored and the rate of speaking may be very slow. Voice quality may be abnormal, usually excessively nasal; volume may be weak; drooling may occur.

Dyskinesia – Involuntary movements most often seen in the arms or legs.

Electroencephalograph, or EEG – A test that measures electrical activity of the brain that is recorded from electrodes placed on the scalp.

Epidural Hematoma – Bleeding into the area between the skull and the dura mater.

Euphoria – An exaggerated or abnormal sense of well-being not based on reality.

Executive Functions – The ability to formulate and carry out plans effectively. These functions are essential for independent, creative and socially constructive behavior.

Expressive Aphasia – also known as Broca’s aphasia. A difficulty in expressing oneself in speech and writing. Characterized by knowing what one wants to say but being unable to find the words to say what is being thought. There is lack of spontaneous speech, words are often labored over and sentences are short and incomplete.

Focal Brain Injury – Damage confined to a small area of the brain. The focal damage is most often at the point where the head hits an object or where an object, such as a bullet, enters the brain.

Frontal Lobe – The front part of the brain; involved in planning, organizing, problem solving, selective attention, personality and a variety of "higher cognitive functions."

Generalized Tonic-Clonic Seizures – A seizure involving the entire body. It is also called a grand mal seizure. Such seizures usually involve muscle rigidity, violent muscle contractions, and loss of consciousness.

Glasgow Coma Scale – A scale used for measuring level of consciousness. Scoring is determined by three factors: eye opening ability, verbal responsiveness, and motor responsiveness. The scores range from lowest level of responsiveness a 3 to highest level of responsiveness a 15.

Hematoma – A collection of blood caused by the rupture or tearing of blood vessels.

Herniation/Herniated –Compression of brain tissue caused by high pressure inside the skull that can lead to death if not aggressively treated.

Hypertension – The medical term for high blood pressure.

Hypotension – The medical term for low blood pressure.

Hypoxia – Decreased oxygen levels in an organ, such as the brain.

Intracranial Pressure (ICP) Monitor – A monitoring device used to determine the pressure within the brain. It is used to assess potential complications resulting from increased pressure exerted on the brain.

Impaired Initiation – The diminished ability to take the first step in beginning an action.

Improvised Explosive Devices, or IEDs – An IED can be almost anything with any type of material and initiator. It is a “homemade” device that is designed to cause death or injury by using explosives alone or in combination with toxic chemicals, biological toxins, or radiological material. IEDs can be produced in varying sizes, functioning methods, containers, and delivery methods. IEDs can utilize commercial or military explosives, homemade explosives, or military ordinance and ordinance components.

Intracerebral Hematoma – Collection of blood inside the brain tissue.

Intracerebral Hemorrhage – A subtype of intracranial hemorrhage that occurs within the brain tissue itself. Intracerebral hemorrhage can be caused by brain trauma, or it can occur spontaneously in hemorrhagic stroke.

Intracranial Pressure, or ICP – The amount of pressure inside the skull resulting from the brain tissue, cerebrospinal fluid and blood volume. This pressure normally ranges from 0-10 mm Hg.

Limbic System – A group of structures deep within the brain that are associated with emotion and motivation.

Lobe – A part of the brain located in each of the two hemispheres. Each hemisphere of the cerebrum is divided into four sections known as the frontal lobe, the parietal lobe, the occipital lobe, and the temporal lobe.

Magnetic Resonance Imaging, or MRI – A test that uses a powerful magnet linked to a computer to make detailed pictures of soft tissues inside the body.

Meninges –The covering of the brain that consists of three layers: the dura mater, the arachnoid mater, and the pia mater. The primary function of the meninges and of the cerebrospinal fluid is to protect the central nervous system.

Mild Traumatic Brain Injury, or mTBI – Also referred to as a concussion, mTBI involves a disruption of brain function caused by trauma. This disruption is characterized by, but not limited to, a loss of consciousness for less than thirty minutes, and posttraumatic amnesia lasting for less than 24 hours, and a Glasgow coma Scale of 13 – 15.

Military Acute Concussion Evaluation, or MACE – A standardized mental status exam that is used to evaluate concussion in theater. This screening tool was developed to evaluate a person with a suspected concussion.

Myalgia – Pain in one or more muscles.

Neurocognitive – Of, relating to, or involving the brain and the ability to think, remember or process thoughts.

Neurons – A nerve cell that can receive and send information by way of connections with other nerve cells.

Neuropsychology – A science that combines the study of the brain’s structures and functions with psychological processes and human behaviors.

Neuroradiological Tests – Tests using computer-assisted brain scans. These tests allow providers to visualize the brain. Tests may include: CT Scan, MRI, Angiogram, EEG, SPECT Scan, PET Scan, DTI Scan.

Neurotransmitters – Chemicals found within the brain that are released from a neuron which transmit signals from neuron to neuron across gaps called synapses. These chemicals either excite or inhibit specific reactions, such as in motor neurons, the neurotransmitter causes contraction of muscles through stimulation of muscle fibers.

Nystagmus – Involuntary, usually rapid movement of the eyeballs (side to side or up and down).

Occipital Lobe – The occipital lobes are found at the back of the brain. These lobes receive signals from the eyes, process those signals, allow people to understand what they are seeing, and influence how people process colors and shapes.

Ocular – Relating to the eye.

Open Head Injury – Trauma to the brain that occurs from a skull fracture or penetrating injury.

Parietal Lobe – The part of the brain that is involved with movement, and with the processing of signals received from other areas of the brain such as vision, hearing, motor, sensory and memory.

Penetrating Head Injury – A brain injury in which an object pierces the skull and enters the brain tissue.

Perseveration – The repeated and uncontrollable use of the same words or actions regardless of the situation.

Photophobia – An intolerance to light; or a painful sensitivity to strong light.

Positron Emission Tomography, or PET Scan – a specialized imaging technique that uses an injection of a short-lived radioactive substance and special CT scans. PET scanning provides information about the body's chemistry not available through other procedures. Unlike other imaging techniques that look at structures of the brain, PET looks at the energy use of different parts of the brain.

Post Deployment Health Assessment, or PDHA – The military’s global health screening that occurs when a unit or service member returns from an overseas deployment. The purpose of this screening is to review each service member's current health, mental health or psychosocial issues commonly associated with deployments, special medications taken during the deployment, possible deployment-related occupational/environmental exposures, and to discuss deployment-related health concerns.

Post Deployment Health Reassessment, or PDHRA – A second assessment used 3-6 months following redeployment or return of service members from overseas deployment. PDHRA extends the continuum of care for deployment related heath concerns and provides education, screening, assessment and access to care.

Post Traumatic Stress Disorder, or PTSD – A condition where memories of traumatic events are re-lived after the fact.

Post-traumatic Amnesia, or PTA – The inability to remember things following a traumatic event. Memory loss caused by brain damage or severe emotional injury.

Rancho Los Amigos Scale of Cognitive Functioning – A scale used to follow the recovery of the TBI survivor and to determine when he or she is ready to begin a structured rehabilitation program.

Receptive Aphasia – Also known as Wernicke’s aphasia characterized by difficulty understanding spoken words. The aphasic individual themselves have difficulty interpreting and categorizing sounds and speak in what is referred to as a “word salad” with random words put together unintelligibly to form sentences.

Seizure – Uncontrolled electrical activity in the brain, which may produce a physical convulsion, minor physical signs, thought disturbances, or a combination of symptoms. Seizures fall into two main groups. Focal seizures, also called partial seizures, happen in just one part of the brain. Generalized seizures are a result of abnormal activity throughout the brain.

Seizures – A sudden or severe change in behavior due to excessive electrical activity in the brain. Many types of seizures cause loss of consciousness with twitching or shaking of the body. Occasionally, seizures can cause temporary abnormal sensations or visual disturbances.

Shaken Baby Syndrome – A severe form of head injury that occurs when an infant or small child is shaken forcibly enough to cause the brain to bounce against the skull, causing brain injury.

Single-photon Emission Computed Tomography, or SPECT Scan – Test that uses the injection of a weak radioactive substance into a vein, followed by pictures taken with special cameras. This test is similar to a PET scan and provides information on the energy being used by the brain.

Skull Fracture – A break, split or crack in the skull.

Subdural Hematoma – Bleeding confined to the area between the outer-most covering of the brain (dura) and the brain.

Temporal Lobes – Temporal lobes are located at about ear level, and are the main memory center of the brain, contributing to both long-term and short-term memories. The temporal lobe is also involved with understanding what is heard, and with the ability to speak. An area on the right side is involved in visual memory and helps people recognize objects and faces. An area on the left side is involved in verbal memory and helps people remember and understand language. The back area of the temporal lobes helps people interpret the emotions and reactions of others.

Thalamus – A part of the brain that is primarily responsible for relaying sensory information from other parts of the brain to the cerebral cortex.

Tinnitus – “Ringing in the ears" or another noise that seems to originate in the ears or head.

Traumatic Brain Injury, or TBI – An injury to the brain as the result of trauma to the head.

Whiplash – An injury to the neck caused when the head is violently thrown back and forth such as in a rear end car collision.

Frequently Asked Questions

What are Common Physical Effects of TBI?

  • Headaches
  • Sleep Changes
  • Fatigue/Loss of Stamina
  • Dizziness
  • Balance Problems (Tendency to Fall)
  • Sensory Changes
More information - Managing Physical Effects of TBI

What Physical Effects May Be Less Common?

  • Spasticity
  • Hemiparesis, Hemiplegia
  • Bladder/Bowel Changes
  • Changes in Swallowing and Appetite; Weight Loss or Gain
  • Visual Spatial Problems
  • Apraxia
  • Seizures
  • Heterotrophic Ossification
More information – Managing Physical Effects of TBI

What are Common Cognitive Effects?

  • Confusion
  • Slowed Speed of Processing
  • Attention Problems
  • Difficulties with Memory
  • Planning and Organization Problems
  • Difficulty with Decision Making and Problem Solving
  • Confabulation
More information – Managing Cognitive Effects of TBI

What are Common Communication Effects?

  • Does Not Speak Clearly
  • Problems Starting a Conversation
  • Word Finding Problems
  • Reading Comprehension
More information – Managing Cognitive Effects of TBI

What Communication Effects Are Less Common?

  • Dysarthria
  • Interrupting or Having a Hard Time Taking Turns in Conversation
  • Topic Selection
  • Writing
  • Non-Verbal Communication Issues

More information – Managing Cognitive Effects of TBI


What Are Common Behavioral Effects?

  • Frustration, Increased Anger/Aggressiveness
  • Impulsivity or Difficulties in Self-Control
  • Poor Judgment
  • Reduced or Lack of Initiation
  • Repetitive Behaviors (Perseveration)
  • Less Effective Social Skills
  • Changes in Sexual Behaviors
  • Lack of Self-Awareness
More information – Managing Cognitive Effects of TBI

What Are Common Emotional Effects?

  • Depression
  • Increased Anxiety
  • Mood Swings (Emotional Lability)
  • Changes in Self-Esteem
More information – Managing Cognitive Effects of TBI

Will our lives ever get back to normal?

The course of recovery after TBI depends on several factors. Your lives may return to “normal” or you may need to learn to adjust to a “new normal.” It can take time to adapt to the life changes after TBI. Although many problems will improve in time, some symptoms may persist throughout the person’s lifetime. Research has shown that many people who experience TBI do lead a life they find satisfying, even if it is not exactly the life they had prior to the injury.


How Should I Organize Medical and Military Records?

A notebook that includes sections for:
  • Personal information – This includes important facts, such as your service member/veteran’s Social Security number, military service record, emergency contacts, and allergic reaction to medications.
  • Military service papers – Keep copies of military service records, etc.
  • Medication log – Write down all the drugs taken, dosages, dates, side effects, and problems.
  • Medical reports, tests, scans – Ask for copies of all reports, scans, and tests, and file them in this section of the notebook. Put CT and MRI scans of the brain on a CD. Keep these to share with future providers.
  • Notes and questions – Include a three-hole punched notepad in your notebook. You can use it to take notes and then insert the sheets in the right sections.
  • Resources and information – This is the place to keep all the forms and information you have received at appointments.
  • Calendar of appointments – Use a calendar with enough room to write all of your appointments.

You may want to keep another notebook or file with the records needed to apply for medical and family benefits or Medical Evaluation Board/Physical Evaluation Board (MEB/PEB). (See Module 4 for more information about the MEB/PEB.) This file will help when you apply for financial aid, a job, or more medical care. When you are not using this file, keep it in a locked place to keep it safe.

This file could include:

  • Social Security card, military records, and insurance cards
  • Power of Attorney
  • driver’s license, birth certificate, marriage certificate
  • school and work records
  • tax returns and assets.


How Can I Tell My Child about TBI?

Communicate in an age-appropriate way what has happened to your family member with TBI. Protecting your children by withholding information may backfire. Children have active imaginations that may create a scenario worse than reality.
More information - Helping Your Children Cope


What Can I Do If Caregiving is Just Too Much?
Have a back-up plan for finding temporary or more permanent residential care for your family member with TBI. Discuss quality of life issues with your family and health care professionals. Your choices may include:
Give others permission to care for your loved one. Seek assisted living facilities and board and care homes—for those who have difficulty living alone but do not need daily nursing care. Consider nursing homes, also called skilled nursing facilities—for individuals who need 24-hour nursing care and help with daily activities. Skilled nursing care can also be provided at home by nurses you hire. Check with your case manager(s), VA liaison, and/or military liaison for residential care benefits that may be available to your family member with TBI.


What Can I Expect When My Family Member Comes Home?
Moving back home is an exciting step in the recovery process! Although the transition to home is certainly positive, it is important to be aware that it may also be stressful at times. Some families report that during the first few days or weeks at home, their family member regress and need more time to adapt to a new environment, even if it’s a familiar one. It is helpful to add structure and consistency right away at home by scheduling activities and rest breaks much like the schedule observed in rehabilitation. Recreational and occupational therapists are your best allies in this effort and they will work closely with you to practice community re-entry.
More information - Preparing for the Transition Home & Transitioning Home


What is the Family and Medical Leave Act?

The Family and Medical Leave Act (FMLA) provides service members/ veterans and their spouses who are employed by companies with 50 or more employees with up to 26 weeks of unpaid leave per year to care for a seriously-injured service member without losing their jobs or health care insurance.
For the most current information: www.dol.gov.
For More Information – LINK to Scene 14 - FMLA


What Temporary Housing is Available for Caregivers?
If your service member/veteran is being treated at a military treatment facility (MTF) or a VA Polytrauma Center, you may be able to stay nearby for free or at a low cost.
Housing for family members includes:

  • Malone House at Walter Reed
  • Navy Lodges
  • Fisher Houses at the VA Polytrauma Centers.
Nonprofit organizations may also make some apartments near treatment centers available to families at little or no cost. Check with your POC to find out what temporary housing is available where your family member is being treated.
More information - Addressing Everyday Issues


 

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"He really won’t tell me the whole story because I think he doesn’t want to scare me. But, he brought me a piece of metal back home that was embedded in the wall right behind him. He said it missed his head by a few inches. He said that he thanks God every day that he’s still alive, and that’s why he brought the piece of metal home, to show me that that’s how close he had come to dying." -  Lynn C-S.

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