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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.

Before the Transition

The transition to home can be an exciting step, but it also can be stressful. Remember, you do not have to do it all yourself. Plan and prepare before your family member comes home.

If possible, try a practice weekend at home. A practice weekend will alert you to how much help you may need. Talk with your health care team about the transition to home and make a plan.

You are providing a very important service to someone you care about.

While managing TBI care at home, you may be: 

  • tracking treatments, and 
  • managing medications
Organizing: 
  • your caregiving tasks 
  • supportive family members and friends who can help 
  • your home life to take care of your service member/veteran with TBI

Asking others for help is not a sign of weakness and it makes good sense. Asking for help is a good way to find resources that will support you and your service member/veteran throughout the recovery period.

Before your service member/veteran with TBI goes home from the hospital:

  • Ask the Point of Contact (POC), case manager(s), VA liaison, and/or military liaison about resources your family member will qualify for from the federal, state, and local government.
  • With the help of your health care team, write a master schedule for your family member. 
  • Ask for a written list of all therapy and exercises (diagrams or pictures of the exercises) to be done at home.
  • Ask for help. Seek out people who offered to help and ask them to be available.
  • Identify services available in your community you can contact for help. The National Resource Directory www.nationalresourcedirectory.org may be helpful. Local brain injury, veterans support groups, and chapters of the Brain Injury Association can also be good resources.
  • Prepare yourself and your home before your family member with TBI arrives. If your family member has physical disabilities, your health care team may be able to do a home safety evaluation.
  • The Department of Veterans Affairs (VA) and some charities have programs that will modify your  home to accommodate your service member/veteran’s needs.
  • Decide what projects and chores can be put off for a while; give yourself permission not to do it all.
  • Make a list of the assistive devices your family member is using in the hospital. Ask the case manager to make sure you will have the same assistive devices at home. Be sure you have prescriptions written for devices needed at home.
  • Know who on the health care team to call for what and post it at home. Organize contact information for the health care team.
  • Make plans to give yourself a break each day. Have someone come to the house, so you can get out for a breather.

What to Expect

  • Know that your family member with TBI will do best with structure, consistency, and a schedule.
  • Stick to your master schedule, so you don’t have to rely on your memory during this time of transition.
  • People with TBI often get more confused. Their behaviors and cognition problems may appear worse for a while after a change even if it’s a good change. Your family member will settle in over time, just as you will.
Related Information:
Before the Transition
Assistive Devices
Medication Log
Glossary
Frequently Asked Questions
"A really super thing for us in terms of communicating with the hospital staff—and the hospital already had this installed in the room—is a big dry erase board. Some people use it and some people don’t. We use it to make a list of all the things we want to talk about with the doctors. That way, if I’m not in the room when the doctors come by on their rotation, they’ve got the big list right there and they can see it clearly. That helps keep the communication going." -  Anna E.

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