Traumatic Brain Injury A to Z - Frequently Asked Questions

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Moving Forward

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Once the family member with TBI is home, the journey continues. Join the group as they discuss some of the challenges that occur, such as keeping the family member safe and dealing with inappropriate behaviors.
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Moving Forward

Tracy
Welcome back everybody. Listen I’d like to start by asking how things are going. So Julie, Carl - - how’s Sam doing?

Julie
He’s doing really well. He seems to get a little bit better each day now. According to him, he’s ready to start driving and go back to work. So I think he’s having a little trouble recognizing his limitations. But I believe that in time, he will be able to do all of those things.

Carl
Like I’ve always said, he’s an amazing kid. He may never get back to 100%, but we’re not ready to rule that out yet.

Tracy
Oh you guys are doing a great job. You’ve definitely got the right attitude. Michelle, how are things going with Tom?

Michelle
Well, as you all know, Tom came home this week. It’s been a bit more challenging than we expected, but still a special time. All in all, he’s doing okay. We’re working on getting him on a schedule. It seems the more structure he has, the better he does.

One good thing is that lots of people have offered to help us.

Tracy
And you are you taking them up on that offer, right?

Michelle
Well, not quite yet. At this point, we’re doing almost everything ourselves, but I’m keeping a list of people who want to help, and my sister is starting to organize our home caregiving team.

Tracy
That’s great. Great. Congratulations to your family. I do know though moving back home can be so stressful at times. So Travis, how’re you holding up?

Travis
It’s better now that Dad’s home, but I just didn’t know how hard it would be. There’s lots to do, but Emily and I are both doing all that we can to help Mom. I’m glad that Aunt Dee is there.

Carl
You know, you’re right, Travis. There’s a lot to do. We thought that we were totally prepared for Sam’s return home, but we kept finding things that we’d missed in our planning.

Tracy
Yeah that’s fairly common, Carl. Try as you might, there’s just really no way to prepare yourself completely for what lies ahead. But the good news is that in most cases, things do settle down and everyone adjusts in time.

Michelle
My biggest concern is that, in some areas, Tom’s not doing as well at home as he was at the hospital. He just seems to be more confused, and less able to focus.

Travis
Yeah, and he’s not talking as well as he was. I mean, it’s still better than before his crani... cranio…

Michelle
Cranioplasty.

Travis
Right. Cranioplasty…but he was talking better before he came home.

Tracy
Well again, you know that’s not unusual. I’ve had many families tell me that during those first few days, even weeks at home, their family member actually seemed to have taken a step or two backwards. Tom may just need a little bit more time to adapt to a new environment, even though it is a familiar one. But having said that, it is important that you be aware of any medical changes in his condition, and be sure to let the doctors know.

So in a minute we’re going to talk more about what to expect when a family member with TBI comes home, but before we get started, Megan we haven’t heard about Clay.

Megan
Well, the doctors say that Clay’s making really great progress. He’s been moved to a different floor, and he’s understanding more and more everyday. It’s still really hard for him to talk…just a few words so far. And after listening to everyone here, I’m trying to imagine what it will be like when Clay comes home. And at this point, that’s pretty hard to do… but I’m trying to stay hopeful until things get back to normal.

Tracy
You know that hope is so important, Megan. We talked about that before. Hold on to it, for yourself, and for Clayton. And keep in mind that that meaning of “normal” may change. You know for most of us, a “normal” and fulfilling life usually includes things like living independently, spending time alone, driving, working…things like that. But for a person with TBI, some... maybe all of those things might not be possible right away. But the hope is always there that, over time, some or even most of those things will be possible.

Like Michelle mentioned just a few minutes ago, people with TBI adjust better when there is some routine, good predictability in their schedule. And over time, that need for so much structure may lessen and more flexibility might be possible.

You know another thing that you may find is that your family member might have a hard time interacting with other people. You may worry a little bit about how he’ll behave. He may be impulsive or act inappropriately. 

Julie
Sam has a lot of problems with impulsivity, so one of our therapists had us act out some everyday social situations with Sam. I think this helped take some of the stress off of meeting new people.

Carl
And we’ll keep doing the role-plays as new situations come up.

Tracy
That’s excellent. Another concern that caregivers sometimes have that relates to bringing the loved one home is how to keep them safe. In your Guide to Caregivers you’ll find a home safety checklist that you can use to determine just how safe your home actually is.

And along that same line, one thing that comes up frequently when TBI patients come home is driving. Now depending on your loved one’s condition, he may be eager to drive. But before that can happen, he should be evaluated. In some situations driving might not be possible. And you may want to prepare him for that possibility in advance.

Let’s take a short break. And then we’ll continue in a few minutes. Okay.

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


 

Related Information:
Ongoing Recovery
What to Expect
Safety Tips
Driving
Alcohol and Drug Use
Avoiding Another TBI
Home Safety Checklist
Glossary
Frequently Asked Questions
"He had visual field deficits right after the injury. They’ve since gotten a little bit better, but he still has visual field deficits. He lost hearing in his right ear, so he can’t hear sometimes when I’m trying to talk to him." -  Aimee W.

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