The Caregiver's Journey
Once the family member with TBI is home, the journey continues. Join the group as they discuss some of the challenges that occur, such as keeping the family member safe and dealing with inappropriate behaviors.
Welcome back everybody. Listen, I’d like to start by asking how things are going. So Julie, Carl — how’s Sam doing?
He’s doing really well. He seems to get a little bit better each day now. According to him, he’s ready to start driving and go back to work. So I think he’s having a little trouble recognizing his limitations. But I believe that in time, he will be able to do all of those things.
Like I’ve always said, he’s an amazing kid. He may never get back to 100 percent, but we’re not ready to rule that out yet.
Oh, you guys are doing a great job. You’ve definitely got the right attitude. Michelle, how are things going with Tom?
Well, as you all know, Tom came home this week. It’s been a bit more challenging than we expected, but still a special time. All in all, he’s doing okay. We’re working on getting him on a schedule. It seems the more structure he has, the better he does.
One good thing is that lots of people have offered to help us.
And you are you taking them up on that offer, right?
Well, not quite yet. At this point, we’re doing almost everything ourselves, but I’m keeping a list of people who want to help, and my sister is starting to organize our home caregiving team.
That’s great. Great. Congratulations to your family. I do know though moving back home can be so stressful at times. So Travis, how’re you holding up?
It’s better now that Dad’s home, but I just didn’t know how hard it would be. There’s lots to do, but Emily and I are both doing all that we can to help Mom. I’m glad that Aunt Dee is there.
You know, you’re right, Travis. There’s a lot to do. We thought that we were totally prepared for Sam’s return home, but we kept finding things that we’d missed in our planning.
Yeah, that’s fairly common, Carl. Try as you might, there’s just really no way to prepare yourself completely for what lies ahead. But the good news is that in most cases, things do settle down and everyone adjusts in time.
My biggest concern is that, in some areas, Tom’s not doing as well at home as he was at the hospital. He just seems to be more confused, and less able to focus.
Yeah, and he’s not talking as well as he was. I mean, it’s still better than before his crani ... cranio …
Right. Cranioplasty … but he was talking better before he came home.
Well again, you know, that’s not unusual. I’ve had many families tell me that during those first few days, even weeks at home, their family member actually seemed to have taken a step or two backwards. Tom may just need a little bit more time to adapt to a new environment, even though it is a familiar one. But having said that, it is important that you be aware of any medical changes in his condition, and be sure to let the doctors know.
So in a minute we’re going to talk more about what to expect when a family member with TBI comes home. But before we get started, Megan we haven’t heard about Clay.
Well, the doctors say that Clay’s making really great progress. He’s been moved to a different floor, and he’s understanding more and more everyday. It’s still really hard for him to talk … just a few words so far. And after listening to everyone here, I’m trying to imagine what it will be like when Clay comes home. And at this point, that’s pretty hard to do … but I’m trying to stay hopeful until things get back to normal.
You know, that hope is so important, Megan. We talked about that before. Hold on to it, for yourself, and for Clayton. And keep in mind that that meaning of “normal” may change. You know for most of us, a “normal” and fulfilling life usually includes things like living independently, spending time alone, driving, working … things like that. But for a person with TBI, some ... maybe all of those things might not be possible right away. But the hope is always there that, over time, some or even most of those things will be possible.
Like Michelle mentioned just a few minutes ago, people with TBI adjust better when there is some routine, good predictability in their schedule. And over time, that need for so much structure may lessen and more flexibility might be possible.
You know, another thing that you may find is that your family member might have a hard time interacting with other people. You may worry a little bit about how he’ll behave. He may be impulsive or act inappropriately.
Sam has a lot of problems with impulsivity, so one of our therapists had us act out some everyday social situations with Sam. I think this helped take some of the stress off of meeting new people.
And we’ll keep doing the role plays as new situations come up.
That’s excellent. Another concern that caregivers sometimes have that relates to bringing the loved one home is how to keep them safe. In your Guide to Caregivers you’ll find a home safety checklist that you can use to determine just how safe your home actually is.
And along that same line, one thing that comes up frequently when TBI patients come home is driving. Now depending on your loved one’s condition, he may be eager to drive. But before that can happen, he should be evaluated. In some situations driving might not be possible. And you may want to prepare him for that possibility in advance.
Let’s take a short break. And then we’ll continue in a few minutes. Okay.