Transcription:
Family Systems After Brain Injury

Melanie Cole (Host): Brain injury affects the entire family, not just the injured person, and the support of the family system plays a significant role in recovery. My guest today is Tana. She's a family counselor for the in-patient acquired brain injury program at Shepherd Center. Welcome to the show, Tana. Tell us a little bit about what families go through in the immediate aftermath of a brain injury.

Tana Hall (Guest): Well, it’s varied as much as people are varied but, generally speaking, as soon as a trauma hospital reports that they've got a serious brain injury, the family in the ICU setting is certainly in shock. Not very many people know about brain injury and it's difficult to explain. But, the initial shock of the “they may die within the next few days” is certainly overwhelming. Once their loved ones is stabilized in the ICU setting, the whole family kind of goes on stop and they circle around the patient and life with them just takes a complete stop. By the time they reach us, they’ve had a little time to get to an acceptance of whether it’s stable and now we’re on to the rehabilitation phase and the family has to start dealing with all of what that next phase means--the role changes that happen, the adjustment to being in a hospital setting for weeks many times. They’ve not slept well; they’ve been sitting in chairs. When they arrive at the Shepherd Center, at least we give them a sense of, “Okay, we've got this. You have an opportunity to take it a little bit more deep breath,” we do a great job of offering a families who to live out of the state to have an opportunity to have an apartment so they can actually sleep on bed. And usually, by the time they get to us, the families who live locally feel better about going home and trusting the care. But, in the initial aftershock, you know, all things sort of get tossed up in the air and the focus becomes on the patient. You know, there is no family counselor in the ICU because they wouldn’t listen to me if they are in the ICU. It’s my job to say, “Hey, take care of yourself regularly, and you can go away. I’m going to stay here in this ICU waiting room.” But, when they get to us, my role is to check in with them and make sure that they're taking care of themselves and realize that they are just as important as the patient and the patient needs them long-term to make sure that they are staying healthy for the patient.

Melanie: What does that mean “taking care of themselves”? What do you tell them to do? I mean, they still have bills to pay and they still have other kids, maybe, or something, to get to school. What do you tell them about doing all of those things?

Tana: Yes. So, you’re absolutely right there. Life does not stop for this injury, right? They have jobs, the mortgage need to be paid, the health insurance need to be paid, other children need to be taken care of and those are the things that I remind them of--that other people in the family system are actually just as important as the patient. Initially, families don't always like hearing that because they want to focus just on the person that is injured. But, that they are as important, the other kids are important. They need to have a home to go to when they leave us and so we need to pay the bills. So, I try to remind them of all those life things that. Of course, they know. You know, there is the difference between practicing what they know and knowing that they need to do these things to take care of themselves. But, I tell them that, you know, please ask as many questions here so that you build up rapport and trust with our nursing staff, with our therapist staff so that they can see that we are going to take care of that patient here so they can go and make sure that they are ready to take their loved ones home in 4-6 weeks, whenever it may be. So, I try to remind them that they are just as important. But, their whole family--this is a family injury. The whole family is going to need to get involved and need to maintain themselves so that they can be ready to integrate their loved one into the next phase which is re-integration into the home and the community which can be a daunting task. So, they need to be healthy and mentally prepared for that. So, I just try to encourage them to care themselves, to get some sleep and eat and manage their lives and we’ll let them know when they need to come back here to get their family training done so that they are ready to take them home.

Melanie: Let’s speak about the family training and when that patient does get to go home. What do you tell those family members about what to expect with somebody who suffered traumatic brain injury? Because life is different now.

Tana: Yes. So, once you’ve seen one traumatic brain injury, you’ve seen one traumatic brain injury. They are very varied. We see some very severely injured people. We have our Disorders of Consciousness program here. Those patients lack a lot of things. Physically, they are very impaired but also with their consciousness, they're not purposely interacting with the environment. So, that's a very different kind of patient than someone who is up and walking and is maybe, you know, their short-term memory isn’t going so well but they are able to maybe make a sandwich for themselves. So, that’s a huge range, right? So, the family training addresses whatever the individualized person needs and a family that’s going to take care of loved ones who cannot speak or even eat, or take care of their bowel and bladder has a lot to learn about care for that person. I encourage them to think about the fact that they’re going to need 24/7 care but, you know, one person can't do all of that. So, how is the family, and the community, and the chosen family and the friends--how are all that going to come together? Most people want to help. I try to remind families that people are out there and they want to help you. So, say “yes” and say “thank you”. You know? Preparing someone to go home is what we do really well. A traumatic brain injury survivor who is not in need of such care may not physical care as much. Maybe they're walking on their own but oftentimes because of that injury, they need help with their executive functioning things. So, things like stopping and thinking before they speak; and planning ahead; and remembering things and being safe. You know, most of our patients who leave here, almost all of them can't return to work right away and driving. Then, they’re dangerous at times. So, a lot of our patients are unaware of their deficits when they leave here, they’re like, “Oh, I’ve got this, I am fine”, and then they fall, you know? So, that’s a lot on a family member because an unaware patient is an unsafe patient. So, we train them on all that stuff and what to look for. Sometimes, it requires locking up tools or knives and making sure that they are not leaving the house unattended. So, it can range a lot and so we do well to personalize that family training for that specific individual and that family situation.

Melanie: And sometimes, it can be difficult for that patient to control their behavior and lead a socially fulfilling life. What do you tell patients’ families about kind of dealing--and you mentioned it just a little in the last question. But, what do you tell them about dealing with that socially? If other people that are coming to visit their family member might feel uncomfortable with words or actions from that brain injury patient?

Tana: Yes. We really want the family to remember that this is a brain injury that’s behaving this way, not the person’s intentions. Try that remind them, you know, what they did before? Okay, let's take a deep breath and remember that this is the brain injury talking. And, I encourage family to educate their communities about traumatic brain injury by going to our website, or I send an email out with different links and say, “Hey, get your friends to start learning about this.” Or, have them visit the patient in the hospital before they go home so that they get a sense of what they're going to be looking like when they go home. It’s important for the whole community to understand, this is the brain injury. Sometimes our families need to be an advocate for that their loved ones they're bringing home by saying, “Hey, since his brain injury, he often will say things that seem inappropriate. So, let's just give him a break on that.” So, I think is really an important piece that they be able to educate the community and that they themselves remind themselves that, “Hey, you know, since the brain injury this happens. These things are said,” and they give a lot of empathy for that patient and a lot of structure. So, we will help them to try to get a routine or structure down. You know and just constantly reminding family and community that a brain injured person, first of all, there is a lot of wide variety on how they may present themselves but they need that empathy and that understanding that this is their lifelong disability for many.

Melanie: So, once the person is home, Tana, there are so many unanswered questions, as you said. That can be so varied and roles in the family change. The stresses on the family changes, maybe financial circumstances change. Give your best advice here in the last few minutes about what you tell families about the stress involved in dealing with someone with traumatic brain injury, bringing them home and what the family needs to know about these changes.

Tana: Yes. Well, the stress certainly can be there. The way that people handle stress is also very wide and varied. Families report that the physical disability portions of some of our patients is the least of their stress when they return home. It’s that emotional piece of personality and emotional changes that are the most difficult to deal with and some people are better at it than others. I encourage the family members to get a counselor, to go vent about it, to find a group of people that understand. You know, all of these families that we have here, they are all on the same ocean. Different boats. Every boat--some boats are doing better than others but it’s the tumultuous ocean that they are living in, and to find people that can empathize with them as the caregiver of the patient is really a key piece. We try to tell them to simplify their lives if they can to eliminate some of the stress because, the role changes themselves are really challenging. And, asking for help. That's really important. Asking and accepting help are really key to helping lower the stress. Talk about it out loud with people that can understand and say you know, “Hey, I can't do this alone. I can’t even do this with three or four people.” And that the families really need to include a plan for their own respite for them to take time for themselves to do things that they used to love to do, to go back to work. Sometimes, our families really get a lot of just been at work themselves because their main work isn’t just caregiving. It can be very difficult to manage all of that and to figure it all out and also not feel guilty about not wanting to care for somebody. There is a lot of guilt that goes along with, “I don’t want to be around this person, but I’m supposed to be around this person.” And how they manage that can be a challenge. But, self-care is vitally important and for the long haul, the family of the loved one caregiver needs to know that they need to get their own needs met also.

Melanie: And why should they come to Shepherd Center for their care?

Tana: Well, at Shepherd Center what we do really well is that individualized plan for the person because, again, once you’ve seen one brain injury, it’s one brain injury that you’ve seen and everybody's different. We do an excellent job of educating the family on what they're seeing currently and what they may expect. Then, that family training piece is individualized and we give them support and we give them support afterward if need be. We do an excellent job of just really meeting the family needs where they are and helping them to dig deep and figure out all of these challenges. Our case management does an excellent job of ensuring a safe discharge plan and really working with all the tools that are in their family toolbox, but in our toolbox and together we’ve built this wonderful toolbox to help these families cope in the long run.

Melanie: Thank you so much for being with us today. You’re listening to Shepherd Center Radio and for more information, you can go to www.shepherd.org. That's www.shepherd.org. This is Melanie Cole. Thanks so much for listening.