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Starting Your Caregiving Journey

Starting Your Caregiving Journey

Tracy
Welcome everybody. I’m so glad you’re here. Now for those of you who don’t know, my name is Tracy, and I’ll be helping to guide you on your journey as a caregiver. Now you’ll hear me use that word a lot - - “journey” - - over the next few weeks, because I look at the role of a caregiver moving along a path towards a destination. Now sometimes that destination will seem really far off, and they’re going to feel like there are enormous obstacles on that path. And then there are going to be other times when that path seems fairly clear. There are specific steps that will help you navigate that path, even in cases where the end point seems uncertain. Now throughout our sessions we’ll be talking about what those steps might be.

Now your injured family member may need assistance for weeks, months. And, some truthfully may need help for the rest of their lives. Every TBI is different and each person needs a different level of help and a different level of support from his or her caregiver. 

So let’s talk for a moment about what it means to be a caregiver. Many people who work with TBI patients feel that having a caregiver just like you is one of the most important aids to recovery. I mean that makes perfect sense because you’re the person who knows that family member best. I mean you know things that the doctors don’t know, the therapists don’t know, and in many cases you’ll have to speak for your service member, especially if he can’t speak for himself.

So your job is to actively follow that treatment plan, offer guidance and help to your injured family member. As a caregiver, you’ll work with the healthcare team. You’ll ensure that your loved one gets the care and the help that he needs.

And along that journey, as a caregiver, you may find yourself involved in many, many roles. For example, you might be called upon to serve as a care manager, an advocate, a benefits coordinator, a health care provider... there are so many roles.

Now, I know all of this may seem new to you, and so we’re going to work together to make sure that you have the tools that will help you be the best caregiver you possibly can be.

At this point, you may feel overwhelmed, you may feel angry, you may feel scared. You might also feel pretty much alone and worn out by your new roles. It will help you to learn as much as you possibly can about traumatic brain injury. And it’s also crucial that you take good care of yourself while you're caring for your loved one, and that you keep the hope alive during your journey toward recovery. Throughout our group meetings we’ll be talking about how you can do all of this.

Now one more quick comment… I know that you guys are at different points in your caregiving, some are further along than others. And if you’ve already experienced certain things on that journey, I hope you’ll share that with the group. I think your insights, what you’ve learned... it’s important to all of us. Okay… well that said, I’d like you to introduce yourselves and tell us about your situation.

Carl
Hello. My name is Carl Chernack, and this is my wife, Julie. Our son, Sam, got hurt in Baghdad. His Humvee was hit by an IED, and some shrapnel entered his brain. He was in a coma for almost a month. But he’s an amazing kid…

Julie
I’m Julie Chernack, and I’m Carl’s “better half” and Sam’s mom. Sam’s injury was 6 months ago. And he’s been home for about a month now. We’ve been caregivers for a while. Pretty much 22 years…

Carl and I are here because we realized that we’re in a new phase of caregiving now that Sam is home. We met Tracy when Sam first got hurt, and she’s been a huge help to us all along the way. When she said that this group was starting, we wanted to be part of it.

Tracy
I suggested that Julie and Carl join us for two reasons. First, I think we can help with Sam’s challenges at home, and I also hope that their experiences over the past few months will be invaluable to you.

Julie
Carl and I have learned that it helps us to talk about what has happened to Sam. So we’re really glad to be here.

Megan
Hi. My name is Megan Baker and my husband’s name is Clayton. He was hit by sniper fire in Afghanistan last month. And he’s beginning to show some responses, but I guess I’m pretty much at the beginning of this. Although these last few weeks sure do feel like a lifetime. I know that I have a lot to learn.

Tracy
Welcome, Megan. We’re really glad that you’re here.

Megan
Me, too.

Michelle
I guess that leaves us. I’m Michelle Lyons. My husband was injured in a mortar attack a little over a month ago. He’s…. he’s conscious, but he’s not communicating much. I don’t know what to think, and at times it is just so frustrating…
 
Travis
It’s okay, Mom.

Hi. I’m Travis, and my dad has a severe TBI. I’m just trying to be here for him, and for my mom. I want to help them both.

Tracy
Thank you so much all of you for being here. I think you’ll find this time together to be very, very helpful.
 

Introduction

You play an important role in the recovery of your service member/veteran with TBI.

You may be a spouse, parent, sibling, or friend. Your job as a caregiver may include being a:

  • case manager 
  • advocate 
  • benefits coordinator 
  • health care provider
All of these roles may be new to you.

Some of the main ideas are:

  • Get to know the members of the health care team and the case managers. They can and will help you during the hospital stay, during recovery, and when your service member/veteran comes home.
  • Keep health care and military information about your service member/veteran in a notebook. Being organized helps you feel less stressed.
  • Talk about your needs and the needs of your service member/veteran to others (advocacy).
  • Take care of yourself first, so you can take care of your service member/veteran.
  • Take time and be honest when helping children and other family members cope with TBI.
  • Allow your friends and family to build a support network to help you. Ask for help. No one can do it alone.
  • Plan for some time off. Respite care and day care programs are valuable resources to you and your service member/veteran.
  • There are ways to balance work and caregiving through Family and Medical Leave and other means.
  • There are key legal issues to address to protect your family and your service member/veteran.
Related Information:
Introduction
Personalized Web Pages
Starting Your Caregiving Journey
Glossary
Frequently Asked Questions
"In the very beginning, I didn’t want to know anything because I was so scared. But a little while later… the doctors would throw out tidbits to me, like he might never speak again and he might never walk again… but I couldn’t understand why. So then I wanted to understand the part of the brain that was injured and why he was having these symptoms or why he was having this diagnosis." -  Patty H.

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