The Caregiver's Journey
Having a parent with TBI can be frightening for a child. Michelle shares some of her challenges with her children, and the group members share ideas about helping children cope with TBI.
Okay, everybody, let’s get started. How’s everybody doing?
Michelle, you want to wait for Travis?
No … no … I don’t think he’ll be here today.
Is everything okay?
Tell me what’s going on …
Well … it’s been a long week. Tom has had a few setbacks. He’d been talking more, sitting up, even trying to get out of bed. But these last few days, he seemed to backslide a bit.
It really hit Travis hard. Last night, he went out with some of his buddies, and he didn’t get home until early this morning. I think he might have been drinking, and who knows what else. I know that with teenage boys there’s bound to be some rebellion, but this is just not like Travis.
Did you talk to him when he got home?
I tried. He was angry … irrational, really. I know he wasn’t himself, but he seemed to blame me for Tom’s situation. And frankly, I’m exhausted. I ran home to check on things there, and take a shower and get Emily off to school. She’s only 10. I can’t even bear to think of how this whole thing is affecting her.
My sister has been staying at the house, so I know that Emily’s in good hands, but I hate being an absentee parent. … I don’t really have a choice right now, do I?
So, it feels like I’m failing all around. I’m giving it all that I’ve got, but it’s not enough ... not enough for Tom, for Travis, or for Emily.
Oh, Michelle, let’s take a few minutes to discuss your situation. We can take a break if you’d like, and then we can talk when you’re ready.
No, I’m okay … really. I don’t want anyone to have to wait on me. We all have enough to do. I’m sorry about all this.
No need to apologize.
Yeah, please tell us how we can help.
You know, Michelle, this is one of the reasons that our caregiver group exists … we’ve gotta be here for each other. That frustration, that despair that you’re experiencing that’s … that’s something that many people experience during their journey as caregivers. That’s why the topic that we covered last week — taking care of yourself — it’s so important.
I’m afraid with all that’s been going on, I didn’t do very well in that area, either. I haven’t been eating right or getting much sleep. As far as relaxation … well, that seems like a part of another life.
I know. But it’s when things are at their toughest that taking care of yourself is the most important. Look, I’m not going to preach about it, but I think it will help you if you … if you really make a purposeful effort to take some time for yourself this week. Will you give it a shot?
Yes, I will. But honestly, it seems like Tom, Travis and Emily need all that I have to give in terms of time and energy.
Just do the best you can, Michelle. It may take some time. You know, unfortunately, as we’ve talked about before, this can be a long journey.
Now, let’s talk about Travis for a moment. I know that although he’s just 17, he seems like an adult in so many ways. And he’s not much younger than many of the service members. But in other ways, he is still just a kid. And of course, at 10, Emily is definitely still just a child.
And having a parent with TBI can be frightening for a kid. Like Tom, the parent with TBI may no longer act the same as he did before the injury. And some kids may feel like they’ve actually lost a parent.
Emily definitely seems frightened right now. Other parents that I’ve met have told me that it’s not unusual for kids to be confused and upset.
They’re right, Michelle. And that can be because Emily’s worried about her dad’s condition, or because she may feel like she’s lost both parents — one to TBI and one to caregiving. You know, you have to remember, kids are really, really perceptive. It’s important to recognize that your children are grieving, just like you. They may withdraw from some social activities with their friends, they may have mood swings, they might be disruptive, or do poorly in school, or show all kinds of other behavioral problems.
My guess is that Travis’ behavior last night is an example of that. He’s acting out, and as hard as it is for me, I should probably expect it.
Children need time. They need space to be kids. It’s important that you communicate with your kids that they’re not to blame for the TBI. Now that may seem so obvious to us as adults, but kids tend to feel responsible for things when things go wrong.
Some kids, like Travis, may even need to take on some caregiving tasks for the parent, or for the younger children in the family. And when they do that, kids can feel conflicted over that role reversal between the parent and the child.
So it will help if you make sure that any tasks that your child takes on, household chores, things like that, they have to be suitable for their age. And in terms of caregiving, you’ll ... you’ll want to determine the tasks that your child will be the most comfortable helping with. It’s so important to include the kids in the recovery process as much as you possibly can. But you want to find other adults to help you, rather than relying on your kids to play a major caregiving role. I mean having your sister help out is a great idea, Michelle.
But you can help your children by explaining TBI in a way that they can understand. You may want someone on the healthcare team to … to talk to the kids about TBI.
Oh, one thing you do want to remember, you want to keep an eye out for signs that your child is not coping well.
Actually, I think Travis has been doing pretty well, overall. You know if he seems to be depressed or he continues the risky behaviors, you might think about getting him some counseling. He’s a good kid, Michelle. He’s got a good head on his shoulders.
He sure does. After that first meeting, Julie and I couldn’t get over what a great attitude he has. You’ve done a good job with him, Michelle. And I’m sure Emily is a great little girl, too.
Oh, she is; but like I said, she’s confused. Obviously, she sees how much time Travis and I are spending at the hospital, but I haven’t allowed her to see Tom. She knows her daddy got hurt, but I haven’t really known what to tell her beyond that.
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