The Caregiver's Journey
Everyone in the family can be affected by their loved one’s TBI, and everyone’s role within the family can change. Join the group as they explore how to build on a family’s strengths.
Okay. Everybody set? Okay, we’re going to continue talking about the family. Now you know, everyone in the family is affected by their loved one’s TBI, and everyone’s role within the family can change.
That’s true Michelle, Julie and I have seen how difficult TBI can be for a family. We’ve seen it first hand, not only in our family, but in some of the other families we’ve met. But, you know, I think times of trouble can also pull families together, making them stronger than ever.
Right, Carl, absolutely. That’s what we’re going to cover next — how to build those stronger family ties during your loved one’s recovery. You know, you may not be able to preserve all your previous family routines, but you can create some new ones. That goes back to that “new normal” you know that we talked about before.
So, try to set aside some time each week for your family to have fun together, move the family focus away from the TBI. Have a family meeting, explain that you plan to hold a family time every week, you know ask for ideas on what to do, when to do it. And members of the family can take turns choosing activities. Try activities that everybody in the family can enjoy. Oh you know board games, taking a walk, taking a run together, baking cookies.
Along with that family time, you can schedule some one on one time with each member of the family because kids … kids really need to have that alone time with their parents. It helps them to feel appreciated. You know, it helps them to feel heard. Plan a date with each child — a shopping trip maybe, or movies, story time. Schedule it on a regular basis. That could be monthly, could be weekly, depending on how many children you have, and what your schedule is like.
And finally, think about those family rituals. Keep them on a schedule as much as possible.
You know, sometimes it’s easier to deal with the stress of TBI by finding and building on your family’s strengths. Remember there is no perfect family, so think about areas that you would like it to be stronger, and discuss those with the rest of the family. It can help if you choose one area that you can work on together.
I’ve been working on something like that lately. Over the past few weeks, I’ve been getting to know Clayton’s parents and brothers much better because we’ve spoken on the phone so often. And his older brother is trying to arrange to come out here to help me, at least until Clay gets out of the hospital. And it’s just funny, because Clayton and I have been pretty independent since we got married. We haven’t really communicated with either side of our families very much.
And now I’m realizing just how much we need them. I don’t think I appreciated Clay’s family enough before all this happened.
You know, that’s a good point, Megan. When a family member is recovering from a TBI, the support of the family becomes particularly important.
You can say that again. Of course, Julie and I had each other when Sam got hurt, but our other kids and their spouses really helped. Even though they live all over the country, they offered us moral support and they listened to us when we needed to talk. Our daughter and her husband came out a couple of months after Sam was injured, just to give me and Julie a break.
Since Tom was injured, I’m also finding out how strong our family is, not just me and the kids, but our extended family, too.
You know, that’s great. There are some family strengths that you can build on as your loved one recovers.
What kind of strengths do you mean, Tracy?
Well, family strengths can include things like caring for and appreciating each other. Michelle, I get the feeling that you do a pretty great job of that with your kids. Commitment is another strength. It involves that devotion, that dedication to the family.
Communication is another important family strength. Keep in mind that when you’re discussing something as emotionally charged as the care of an injured family member, there can be a lot of confusion and misunderstandings. Those can easily occur. So remember to listen carefully when another person is telling you how they feel. Try re-stating what they just said to see if you understand their position correctly.
Yeah. This became really important to Carl and I when we were taking turns at the hospital. We were both so tired, that we found that we could easily misunderstand each other, especially when we were talking about what the doctors had told one of us. Repeating things back really helped.
That’s it exactly — active listening. It sounds like you two were doing a great job of working together, which that’s another way to strengthen the family. Sharing tasks, decision-making that will help things run much more smoothly. When important decisions need to be made, all the family members should share their points of view.
Again, be flexible. You've got to be open to change. Those are also key elements to the strength of the family. Now a TBI in the family means that roles and responsibilities will shift. Learning to manage change can be a challenge, but it can be done.
Now, for those of you who don’t have family here to help you, or living nearby, another source of strength involves community ties. Keeping close ties with your neighbors and the larger community can be extremely helpful in trying times.
Those are great suggestions, and Travis, Emily and I will keep working on it. Another family-related issue is that I’ve run into some challenges with Tom’s family. Nothing major, it’s just sometimes I feel that his father is second guessing my choices about Tom’s healthcare. It’s tough, because his dad isn’t here to talk with all of the doctors, and I’m probably not doing a great job passing on what I learn. Still, decisions have to be made.
Yeah, unfortunately, that’s fairly common, Michelle. You know spouses and in-laws may disagree about who is the best caregiver and where care should be provided. But remember that everyone is under a great deal of stress. Try to talk openly about each person’s point of view. Seek that professional guidance if you’re not able to resolve the issues yourselves.
Yeah, I’ll definitely keep those things in mind, as I get to know Clayton’s family, and communicate with my own parents. And I know that talking openly is so important, but there are some things that are really tough to talk about. You know … things that are just really hard to share with other people, especially my in-laws?
Anything that we can help you with there?
Well, this is really awkward, but … I’ve just been thinking about the future and doing some reading about TBI. And I love Clay more than anything in the world, but I don’t know what kind of relationship we’ll eventually have, or if we’ll be able to have a relationship at all — I don’t know how everything is going to affect all of our family plans.
I think I understand what you’re trying to say, Megan. I know that I don’t feel comfortable talking to people about sex or what’s going to happen, especially in the early stages. But it’s a big concern for me, and for some of the other wives I’ve met.
Yeah, me too. I’m just really worried about that, especially because we don’t have any kids yet. So it could mean ... who knows ... no kids ever. I don’t know … everything is just so uncertain …
Just know that your concerns are perfectly natural. Some people with TBI may lose interest in sex. This can be because of biological changes or medications. You know over time these can improve, but if you’re concerned about intimacy, don’t hesitate to talk with your provider about it.
Another concern that can be a challenge for spouses of TBI patients involves the changes in the relationship. It can be very, very difficult to go from the role of a lover, or a partner, to the role of caregiver. I know one wife told me that she felt more like a mother than a wife to her husband, and she found that, you know, particularly frustrating.
So I do encourage you to seek counseling, you know, if you feel that you need it. Military family advocacy programs and other on-base support programs can provide a resource for counseling. I really do urge you to take advantage of the resources. But most of all remember this, there’s nothing to be embarrassed about.
Okay, well, I know we’ve covered a lot of ground today, so this … this is a good time to break. Does anyone have any other questions? Anything to talk about?
Okay. Again, most of all, I ask you to take good care of yourselves this week. Feel free to call me. Send me an e-mail if you need to, any questions you have. And have a good week. Be kind to yourselves. Okay.