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Preparing for the Transition to Home

Preparing for the Transition to Home

Tracy
Hi everybody. It’s… It’s good to see you all here. I hope you had a good week. I hope things are progressing, things going all right.

Travis
Excuse me a minute, Tracy. Can I say something?

Tracy
Sure.

Travis
I know that my Mom probably told you guys everything that happened last week. I just don’t have an excuse for it. I mean… I guess I just felt overwhelmed, and I thought that partying with my friends would help it. It just didn’t. And I owe an apology to all of you.

Tracy
Was there something specific that happened?

Travis
No. It was just the situation, I guess. I mean…with my dad being in the hos… with my dad being in the hospital and me trying to be the “man of the family” I’m just not doing that good of a job at it.

Michelle
Oh honey, you’re wonderful. You’re a big support, and I don’t know what I would do without you. But you’re also still a kid, and I have to remember that and stop laying so much on you.

Travis
Mom, I asked to be involved in this. I mean really, I insisted on it, I guess I just didn’t know what it would be like.

Tracy
So, Travis, are you doing better now?

Travis
Much better. I mean I’m getting my act together, and my Dad’s doing a lot better, too. I mean he had surgery to fix his skull, and it’s amazing how much it helped. He’s talking more, and he doesn’t have as many headaches.

Michelle
Tom’s cranioplasty went really well, and it’s made a big difference. Like Travis said, he’s talking more, he’s smiling at appropriate times, he’s eating on his own… We’re feeling pretty positive for the first time in a long time.

Tracy
Congratulations!  That’s great.

Michelle
Thank you. You know, I think some of the hardest things about caregiving are the constant ups and downs. One minute everything seems so bleak, and the next minute there are these incredible highs. It feels so good to have hope, but I have to remind myself that there will be another challenge right around the corner.

Travis
Mom, let’s just enjoy this moment.

Carl
Well said, Travis. There’s going to be many highs and lows in the coming months, and maybe years. Julie and I have learned to appreciate when things are going well.

Megan
Yeah and I actually found a church near the hospital, and that’s exactly what the Pastor told me. So I’ve spent this week really focusing on the little things that tell me Clay’s progressing, and that really helps. And yesterday when I got back to his room after meeting with his team, he actually waved at me. And of course, it was just lifting his fingers a few inches, but it was really awesome.

Tracy
Oh, I am so proud of you of all, and I am thrilled with… with Clayton’s improvement and Tom doing so well. Remember, recovery can be a series of small steps, but each step is so important. And, of course, there will be big steps too, like Clayton waking up. And of course, Michelle and Travis will be helping Tom take that big step in the next few weeks when he comes home.

Michelle
We’re so happy, and so is Tom. But, truthfully, I’m a bit nervous. There’s so much to do to get ready.

Tracy
Well that’s what we’re going to cover today. You know, the transition to home can be both exciting and really stressful. One thing you want to remember is that you don’t have to do it all by yourself. Ask others… Asking others for help is not a sign of weakness. Of course, there will be some people who want to help you along the way without even being asked.

Now as Tom makes the transition home or, in some other cases, to another facility, your POC, your case manager, and your VA or your military liaison, they’ll all be there to help. Now you need to discuss the transition home with your health care team and work with them to make a plan based on your family member’s needs.

If you can, try a trial weekend at home. That will help you decide how much help you’re going to need, any modifications to the home that might be necessary, and just what to expect in general.

Carl
Sam was home for a weekend a few weeks before he came home. We realized then that we had a lot to learn, and a lot to do to get ready for a more permanent transition. I’m glad that we got a head start when we did,

Tracy
Was Sam’s health care team helpful in the planning?

Julie
Oh gosh, absolutely. We couldn’t have done it without them. They helped us find all kinds of resources that Sam qualified for, and really just helped us every step of the way.

Tracy
Well let’s talk about some of those steps. Like Carl and Julie, it’s really important to be prepared before your family member comes home. Give yourself plenty of time to get that done. Like Carl said, you know it doesn’t just happen overnight.

One of the first things you’ll need to do is talk to your health care team about the home safety evaluation. Your home may need to be altered just to make it safer. You want to make it as suitable as possible for your loved one’s needs. Home modifications can be relatively minor and inexpensive... things like oh installing grab bars, handrails, lever handles on the doors.

And in other cases, those modifications could be a little bit more major, more expensive. Things like installing elevators or lifts, or modifying kitchens for easier meal preparation, installing emergency communication systems if that’s necessary. There is a program, called the Specially Adapted Housing Grant, that’s available through the VA, they can help cover the cost of modifications.

And be sure not to rush into those major modifications because your loved one’s needs may change over time. You can plan other modifications as his rehabilitation continues. 

Now as you get ready to bring your family member home, you’ll also need to plan for any special equipment that might be required. So be sure and make a list of the assistive devices that your family member is using in the hospital now, and ask the case manager or the discharge planner to make sure that you’ll have that same equipment. Okay. Now having equipment prescriptions written in advance, so that those devices will be there when your loved one gets home that’s important. Without the prescription, the cost of those devices might not be covered by the military, the VA, or your insurance company.

Megan
So what kind of equipment… of…assistive devices might we need?

Tracy
Well, Megan, assistive devices can be anything from simple to complex equipment, anything that helps that person with TBI be more independent. Some of the more simple things could be a magnifying glass, or a timer to remind the person when to take their medications. And they make a special grip that you can put on to your fork or your pen that helps with writing and eating. It’s really cool. More complex devices might include a personal digital assistant, or a PDA, a hand-held GPS helps them find their way around, or special telephones that help people with speech and hearing problems communicate. In some cases your family member with TBI might need a cane, or a walker, crutches, a special bed might be necessary. Your health care team will help you decide just exactly what your loved one will need, and where to locate the items.

Julie
One thing we learned with Sam’s devices was to keep the phone number for the medical equipment company right by the phone just in case we had any problems. Carl got to know the people from the company, so we always knew who to talk to.

Tracy
That’s a really good suggestion, Julie.

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:
Before the Transition
Assistive Devices
Medication Log
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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