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Getting Organized

Getting Organized

Okay, the next thing that we’re going to cover is called case management. Now I know that sounds pretty clinical. Of course, what I mean is how you manage or coordinate the care that your family member receives. Now a big part of that is how you organize their medical and their military records. 

I cannot stress enough the more organized you are, the better. Being organized will help you have so much more control when you’re making those decisions, and it will ensure that you have access to accurate information. It’ll also help reduce your stress by having you know all that care-related information that you need just in one place.

It took us awhile to get organized with all of Sam’s paperwork. At first we were… we were a mess. Now, we’re much better at it. We keep a notebook or file for everything.

Every time Sam gets a new medication, they give us a sheet that lists the side effects and all of that. That goes in the medication slot. Every time he has surgery, that information goes into the surgery slot. Julie actually created a file on the computer of every surgery that he’s had, and what they’ve done, and the dates. And I’ve documented every seizure that he’s had. We carry that information with us so that when someone asks about Sam’s medications, or about his surgery or seizure history, it’s right there.

That’s really excellent, Carl and Julie. I knew that your experience would be helpful to the others.

Now you may end up with several notebooks and file folders to help keep the information together. Just be sure to keep all medical information, and like Julie, you may want to enter information into a computer file. That’s a great idea.

So what else should we have in the notebook? I mean, are there certain things that we might need, or that we’re likely to be asked for?

Well absolutely. I mean that’s a really good question, because your notebook should include sections for the personal and military information, emergency contacts, any allergic reactions that he might have had to any medications.

Another really important thing to have is to include Clayton’s medication log. Be sure to write down all the medicines that are taken, the dosages, the dates, any side effects, any problems. You’ll find a form that you can use in your Guide for Caregivers.

You’ll also want to keep copies of all of his medical records, including all the reports, tests, scans in a section of the notebook. Now you’ll need to ask your care coordinator how to get copies of those test results. But you… you can put your CT and the MRI scans of the brain on a CD, you can keep them right there and you can share with future providers. 

It’s also a good idea to include three-hole punched paper right in the notebook. And that way, you can use it to take notes and then insert the sheets right in the right place.

And your notebook should also include a resources, information section, that’s where you can keep the forms and the information you receive at appointments. But and finally, you’re going to want to keep a calendar of appointments in the notebook, and you’re going to want to have that with you at all times.

I’ve also started to accumulate paperwork about benefits and stuff. Should I put that in the notebook, too?

Oh yes. Yeah and you may want to keep another notebook for medical and family benefits or Medical Evaluation Board and the Physical Evaluation Board information. You’ve probably heard these boards referred to as MEB and PEB.

These benefits files are important because it will help you when you apply for financial aid, or a job, or more medical care. So you’ll want to keep a back-up copy of that file too just in case it ever gets lost. 

Now your benefits file could include things like Social Security numbers, military records, insurance cards, Power of Attorney, driver’s license, birth certificate, oh and your marriage certificate that should also be included. It’s also a good idea to keep school records, work records, tax returns, a list of assets in the second file. We’ll talk more about benefits in a later session.

This is going to be so confusing. I don’t know how I’m going to keep all of this straight. I mean we don’t have family around here, so it’s just me.

Oh Megan, I know this can be overwhelming, just try to keep in mind that there are so many sources of support. You’ve got the doctors, the therapists, caseworkers, counselors…all the professionals that are there to help you every step of the way. You’ve got friends, the chaplains, support groups like this. You know part of what we’re here for is to establish a support network. But we’ll talk more about that later as well.

Now one more thing that I wanted to cover today, and that’s… well paying the bills, handling the finances. If your family member with TBI was responsible for those things, you should make sure that your name is on all the accounts, that you’re authorized to make transactions. That can be challenging sometimes. You know it might be necessary for you to obtain legal assistance to do this. But one other thing that you might want to consider is online banking and bill paying that can definitely streamline things, especially when you’re away from home.

And streamlining things…making things easier for your loved one with TBI and for yourself that’s … that’s such an important part of being an effective caregiver.

Tracy, right now, it just seems like during the day I’m always with Clay and the doctors. I mean do I need to pay all the bills and deal with the accounts right now?

Well, this can be very time-consuming, but it’s important. You need to get started right away. Just see if you can set aside a block of time each day, make those calls, complete the paperwork that you need to. Just… just do the best you can that’s all you can do.

Look I know that you have so much going on right now, but I ask that you try to take some time this week to take care of yourselves. Get plenty of rest, you’ve gotta be as sharp as you can to take care of that family member. Now hang in there. Okay.

So are there any other questions? Nothing else. Okay. So I’ll see you next week. You take care! Call me if you need me. 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:
Planning for the Future
Organizing Records
Organizing Information
Paying Bills
Medication Log
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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