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Tips for Caregivers of People with Brain Injury

Recovery from brain injury is unpredictable and can be frustrating.

Those who provide care for a loved one with a brain injury can gain insight and encouragement from these tips from a longtime director of brain injury services.

Listen in as Susan Johnson, M.A., discusses the care you can provide for your survivor of a brain injury.
Tips for Caregivers of People with Brain Injury
Featured Speaker:
Susan Johnson, M.A.
Susan Johnson has been the director of brain injury services at Shepherd Center in Atlanta since 1998. She directs a full continuum of brain injury services, including acute care, inpatient rehabilitation and post-acute care that encompasses outpatient services, day program services, residential services, assisted living and a mild traumatic brain injury and PTSD program for military service personnel injured in Iraq or Afghanistan. Johnson is a speech-language pathologist and a certified case manager. Johnson has spoken at numerous national and regional workshops on brain injury and has received numerous awards for advocating for people with brain injury.

Melanie Cole (Host):  Recovery from brain injury is unpredictable and can be very frustrating. Those who provide care for their loved one with the brain injury can gain insight and encouragement from my guest today, Susan Johnson. She is the director of the Brain Injury Services at Shepherd Center. Welcome to the show, Susan. Tell us a little bit about brain injury as it goes for the caregivers. Once they get someone home, what can they expect? I know it depends on the severity of the injury, but generally, what can they expect? 

Susan Johnson (Guest):  Well, for folks with brain injuries and their family and caregivers, there are a lot of role changes that happen after a serious injury like this, and as a result of those role changes, you may have differences in how individuals may function in there with a spouse. Whereas that spouse might have been paying all the bills and the other one was not, now they are all of a sudden having to do that. On top of taking care of children, he may have been working full time and the wife was not working. I think those things have to be considered, and some good tips for knowing how to manage that is to really try to figure out how to organize your day and how to use other support people in your community or in your support network to help support you in doing that. Most importantly is to take care of themselves and still try to get back into everyday activities and doing some of those kinds of things. A lot of times, what we recommend is sort of setting up a checklist of all the things that need to be done. Then you take that checklist and you decide how much that individual can do who’s had the brain injury and how much support they may need, and then help try to look at other support systems to support the caregiver in being able to manage that themselves or, again, finding somebody else.

Melanie:  Some of the physical symptoms that may occur, that might affect how the caregiver helps their loved one might be something like what? 

Susan:  Some of the physical things that the individual caregiver might have to do is basic toileting. They may still not be very continent day-to-day, and a lot of times what we try to do is to help families set up a toileting schedule or to find somebody who could manage that care for toileting or bathing. Another area for physical care may be feeding. Sometimes, if there are children in the home, certainly we don’t want them to feel like they can’t go out and still be a part of their journey. But they may want to help mom feed or eat or sit with them and have a conversation as they might need some activity to help initiate the actual feeding schedule. Other physical things may be managing some of the behavioral or emotional changes that might happen. Knowing how to manage those kinds of things, getting frustrated with not being a producer and things, and how as a caregiver do I manage that and still give them the independence they may need. Or for emotional outburst, because they’re not necessarily feeling good about who they are now, how do you handle and still develop that structure but still manage their emotions in the grieving process and awareness of their injury. A lot of techniques that we give to these individuals for managing the behavior or emotional outbursts is trying to be patient with them and to give them opportunities to try to redirect or manage those day-to-day issues or some of the emotional things—being patient, listening, hearing where they’re coming from and then trying to either, again, redirect or help support them and manage them through those emotional changes. 

Melanie:  Because these kinds of changes with brain injury can be so devastating emotionally and mentally for both the caregiver and the loved one who suffered the brain injury, what do you advise for support for these emotional changes that are going on with your brain injury loved one as the caregiver? How do you deal with those, as you mentioned, emotional outbursts and these kinds of things that go on? And as the caregiver, what do you do about those? 

Susan:  Well, things that you can do for those kinds of things is provide positive reinforcement to your loved ones so that they’re also feeling like it’s just not always about something they’re not doing. This really helps boost the self-image of the person with the brain injury. Other really key point for an individual is encouraging dependence, allowing them to do for themselves. A lot of times, we as caregivers want to do for them, but it’s important that you allow them to begin to do those kinds of things that they were normally used to doing prior to that but might need some support. Another key point for, I think, for families is simplify, simplify, simplify. Try to make those things very simple and repetitive so that you’re not consistently having to redirect or repeat what actually has occurred. Don’t forget about themselves. In other words, try to give them their own support in getting out and about and try not to feel frustrated or resentful because it’s important for you to be able to have your life as well and, as we talked about earlier about organizing your day, helps you to put in perspective what you can do for yourself as well. Because that’s important to them, to the person with the brain injury as well. Another area is offering cues to the person with the brain injury and try to be as consistent as possible because that consistency and structure and organization helps that brain rewire to make things make sense so that they have that and that consistency allows them to get better. 

Melanie:  When you’re feeling frustrated that you’re doing these consistent things and you think that you’re reasoning with this person with brain injury, and for some reason you feel that they’re just not getting what you’re trying to get them to learn or do for themselves, what do you advise to deal with that frustration? 

Susan:  I would consult a professional because I do think that there are times when people with brain injury sort of come to a point where they might need additional medication management or they may need additional treatment to help identify structures that might be more from a therapist point of view or physician point of view. 

Melanie:  What about things like changes in sleep patterns and even some of the other physical symptoms that go on? And when does it come down for the caregiver, Susan, to when you need to hire some help because you just can’t do it all by yourself anymore? 

Susan:  I think the changes in sleep are probably the most long-lasting issues that do happen. And there are medicines that can help with that. I think that supporting these individuals and knowing they also can hire caregivers to help with some of that transition to that recovery or those times the frustration happen. There are folks in the community that can provide that kind of support. We like to use agencies that are familiar with brain injury that maybe can offer some of that behavioral and emotional support that maybe other agencies haven’t been able to train their staff to do. We also have, in many communities now, they have what they call life coaches, who can actually come in to the home and help support the individual in providing the structure and organization that sometimes can be tough for families who aren’t used to having to do that. 

Melanie:  In just the last few minutes, Susan, give us your best advice for the caregivers of brain injury victims and why they should come to Shepherd Center for their care. 

Susan:  Well, I believe that Shepherd has an environment that supports people with brain injuries. Along the continuum of care, we offer that hope, we offer strategies, we offer caregiver techniques on how to manage post leaving Shepherd Center. We offer life coaching and transitional support. I think most importantly, we have a website called My Shepherd Connection that actually gives you very detailed information about what I just talked about, but also about other issues related to the care and needs of people with brain injuries—frequently asked questions, et cetera. We give a lot of help and support. We learn by the people who are the patients and the families who have told us what’s working and what’s not, so therefore we feel we are able to give individuals the lifelong support they need. 

Melanie:  Thank you so much. You’re listening to Shepherd Center Radio. For more information on brain injury and tips for caregivers, you can go to That’s This is Melanie Cole. Thanks so much for listening and have a great day.