Traumatic Brain Injury A to Z - Frequently Asked Questions

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Helping Your Children Cope

Click to play Helping Your Children Cope
Having a parent with TBI can be frightening for a child. Michelle shares some of her challenges with her children, and the group members share ideas about helping children cope with TBI.
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Helping Your Children Cope

Tracy
Okay everybody, let’s get started. How’s everybody doing?

Michelle, you want to wait for Travis?

Michelle
No…no… I don’t think he’ll be here today.

Tracy
Is everything okay?

Tell me what’s going on…

Michelle
Well… it’s been a long week. Tom has had a few setbacks. He’d been talking more, sitting up, even trying to get out of bed. But these last few days, he seemed to backslide a bit.

It really hit Travis hard. Last night, he went out with some of his buddies, and he didn’t get home until early this morning. I think he might have been drinking, and who knows what else. I know that with teenage boys there’s bound to be some rebellion, but this is just not like Travis.

Julie
Did you talk to him when he got home?

Michelle
I tried. He was angry…irrational really. I know he wasn’t himself, but he seemed to blame me for Tom’s situation. And frankly, I’m exhausted. I ran home to check on things there, and take a shower and get Emily off to school. She’s only 10. I can’t even bear to think of how this whole thing is affecting her.

My sister has been staying at the house, so I know that Emily’s in good hands, but I hate being an absentee parent…I don’t really have a choice right now, do I?

So, it feels like I’m failing all around. I’m giving it all that I’ve got, but it’s not enough…. not enough for Tom, for Travis, or for Emily.

Tracy
Oh Michelle, let’s take a few minutes to discuss your situation. We can take a break if you’d like, and then we can talk when you’re ready.

Michelle
No, I’m okay…really. I don’t want anyone to have to wait on me. We all have enough to do. I’m sorry about all this.

Carl
No need to apologize.

Megan
Yeah please tell us how we can help.

Tracy
You know, Michelle, this is one of the reasons that our caregiver group exists…we’ve gotta be here for each other. That frustration, that despair that you’re experiencing that’s…that’s something that many people experience during their journey as caregivers. That’s why the topic that we covered last week - - taking care of yourself - - it’s so important.

Michelle
I’m afraid with all that’s been going on, I didn’t do very well in that area, either. I haven’t been eating right or getting much sleep. As far as relaxation…well, that seems like a part of another life.

Tracy
I know. But it’s when things are at their toughest that taking care of yourself is the most important. Look I’m not going to preach about it, but I think it will help you if you…if you really make a purposeful effort to take some time for yourself this week. Will you give it a shot?

Michelle
Yes, I will. But honestly, it seems like Tom, Travis and Emily need all that I have to give in terms of time and energy.

Tracy
Just do the best you can, Michelle. It may take some time. You know unfortunately, as we’ve talked about before, this can be a long journey.

Now, let’s talk about Travis for a moment. I know that although he’s just 17, he seems like an adult in so many ways. And he’s not much younger than many of the service members. But in other ways, he is still just a kid. And of course, at 10, Emily is definitely still just a child.

And having a parent with TBI can be frightening for a kid. Like Tom, the parent with TBI may no longer act the same as he did before the injury. And some kids may feel like they’ve actually lost a parent.

Michelle
Emily definitely seems frightened right now. Other parents that I’ve met have told me that it’s not unusual for kids to be confused and upset.


Tracy
They’re right, Michelle. And that can be because Emily’s worried about her Dad’s condition, or because she may feel like she’s lost both parents - - one to TBI and one to caregiving. You know you have to remember, kids are really, really perceptive. It’s important to recognize that your children are grieving, just like you. They may withdraw from some social activities with their friends, they may have mood swings, they might be disruptive, or do poorly in school, or show all kinds of other behavioral problems.

Michelle
My guess is that Travis’ behavior last night is an example of that. He’s acting out, and as hard as it is for me, I should probably expect it.
 
Tracy
Children need time. They need space to be kids. It’s important that you communicate with your kids that they’re not to blame for the TBI. Now that may seem so obvious to us as adults, but kids tend to feel responsible for things when things go wrong.
 
Some kids, like Travis, may even need to take on some caregiving tasks for the parent, or for the younger children in the family. And when they do that, kids can feel conflicted over that role reversal between the parent and the child. 

So it will help if you make sure that any tasks that your child takes on, household chores, things like that, they have to be suitable for their age. And in terms of caregiving, you’ll...you’ll want to determine the tasks that your child will be the most comfortable helping with. It’s so important to include the kids in the recovery process as much as you possibly can. But you want to find other adults to help you, rather than relying on your kids to play a major caregiving role. I mean having your sister help out is a great idea, Michelle.

But you can help your children by explaining TBI in a way that they can understand. You may want someone on the health care team to…to talk to the kids about TBI.

Oh one thing you do want to remember you want to keep an eye out for signs that your child is not coping well. 

Michelle
Like Travis.

Tracy
Actually, I think Travis has been doing pretty well, overall. You know if he seems to be depressed or he continues the risky behaviors, you might think about getting him some counseling. He’s a good kid, Michelle. He’s got a good head on his shoulders.

Carl
He sure does. After that first meeting, Julie and I couldn’t get over what a great attitude he has. You’ve done a good job with him, Michelle. And I’m sure Emily is a great little girl, too.

Michelle
Oh, she is, but like I said, she’s confused. Obviously, she sees how much time Travis and I are spending at the hospital, but I haven’t allowed her to see Tom. She knows her daddy got hurt, but I haven’t really known what to tell her beyond that.

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:
Tips for Helping Children Cope
Helping Children
Glossary
Frequently Asked Questions
"I so wish that at the beginning I had had someone like the people I’ve met here at Fisher House, who are already two years post-injury. I wish I would have had some- body like that come up to me and just put their arms around me and say, You know what? Any question you need to ask, just ask it." -  Meredith H.

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