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Caregiver FAQs

What are some of the common physical effects of TBI?

  • Headaches
  • Sleep changes
  • Fatigue/loss of stamina
  • Dizziness
  • Balance problems (tendency to fall)
  • Sensory changes (loss of feeling in the arms, legs, face, or body)

What are some other possible physical effects of TBI?

  • Spasticity (a muscle control disorder)
  • Hemiparesis, hemiplegia
  • Bladder or bowel function changes
  • Changes in swallowing and appetite; weight loss or gain
  • Visual spatial problems
  • Hearing loss or changes
  • Apraxia (a motor speech disorder)
  • Seizures
  • Heterotrophic Ossification (the presence of bone in soft tissue where bone normally does not exist)

What are some of the common cognitive effects of TBI?

  • Confusion
  • Slowed speed of processing
  • Attention problems
  • Difficulties with memory
  • Planning and organization problems
  • Difficulty with decision making and problem solving
  • Confabulation (a memory disorder)

What are some of the common communication effects of TBI?

  • Does not speak clearly (slurred speech, speaks too loudly or softly, speaks too fast)
  • Problems starting a conversation
  • Word finding problems
  • Reading comprehension

What are some other communication effects of TBI?

  • Interrupting or having a hard time taking turns in conversation
  • Difficulty selecting topics for conversation
  • Writing
  • Non-verbal communication issues

What are some of the common behavioral effects of TBI?

  • Frustration, increased anger, or aggressiveness
  • Impulsivity or difficulties in self-control
  • Poor judgment
  • Reduced or lack of initiation
  • Repetitive behaviors (perseveration)
  • Less effective social skills (poor or excessive eye contact, inappropriate facial expressions or body language)
  • Changes in sexual behaviors (increased or decreased sexual desire)
  • Lack of self-awareness and sensitivity to others

What are some of the common emotional effects of TBI?

  • Depression
  • Increased anxiety
  • Mood swings (emotional lability or excessive laughing or crying)
  • Changes in self-esteem

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 healthcare 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). 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. It’s also important to communicate to your child that he or she is not to blame for the TBI.

This table may help you find age-appropriate ways of communicating with your child about what has happened and what the "new normal" is going to be like:

Age and Stage of Development Communication Technique
Age 2-3
Can differentiate expressions of anger, sorrow, and joy
  • Use simple words
  • Use picture books
  • Create simple books with pictures of family members and simple objects the child understands (hospital, doctor, bed)
  • Offer dolls to play with so they can recreate what’s happening at home or at the doctor’s office
Age 4-5
More self-secure, can play well with others, tests the rules, “magical thinking”
  • Select books with stories that mirror families like yours to help your child relate
  • Familiarize your child with pictures of objects and concepts related to medical care and health (hospital, gown, doctors, flowers, bed)
  • Incorporate play with a child’s doctor kit to familiarize your child and symbolize what’s happening
Age 6-7
Capable of following rules, enjoys having responsibility, uncertain of the relationship between cause and effect
  • Use interactive communication – reading books and creating stories with your child
  • Help your child create his or her own "this is our family" album and talk about the photographs and memorabilia
  • Watch movies with storylines similar to what your family is experiencing
Age 8-11
Has a better understanding of logic and cause/effect, less centered on self, able to understand others’ feelings, can empathize
  • Listen to your child’s thoughts and opinions
  • Ask questions that go beyond yes and no
  • Depending on your child's level of development and understanding, speak with direct, reality-based explanations that include facts
  • Include the sequence of events involved and what to expect
Age 12-17
Experience puberty and physiological changes, seek freedom and independence, acceptance by peers is extremely important, develop more intimate relationships, more thoughtful and caring
  • Give facts: what is expected to happen including diagnosis, prognosis, treatments, and expected outcomes
  • Talk with your children, not to them
  • Check in and offer time to discuss concerns frequently
  • Listen attentively
  • Ask questions that go beyond yes and no
  • Stay alert for risky behaviors, acting out, and noticeable withdrawal
  • If risky or concerning behaviors are present, seek professional help

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 regressed and needs 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.

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 more information, visit www.dol.gov.

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 and many military treatment facilities.

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.