“I just want to feel useful again, like I have some purpose.”
“I just want to know is there anything I can do?”
“I just want to know I’m not going crazy.”
“I want to be happy again, have friends again and feel satisfied in relationships.”
These are among the heartbreaking responses Herman Lukow, a licensed professional counselor (LPC) and licensed marriage and family therapist, receives from clients who have experienced a traumatic brain injury (TBI) when he asks what they want and need from counseling.
Individuals who have experienced a TBI often find themselves facing change and challenge in nearly every aspect of life. Depending on the severity of the injury and their recovery trajectory, TBI survivors can experience memory loss, personality changes and difficulty with language, comprehension, impulsivity, anger and decision-making. This is in addition to physical issues such as having challenges with balance, coordination and mobility. Individuals with a TBI may no longer be able to work in the field or job they once had. They may lose the independence to do things such as drive a car, and their friends and loved ones may struggle — or even give up on — maintaining a relationship with this new, changed person.
These clients might come to counseling after experiencing a hospitalization and lengthy rehabilitation process involving countless appointments with a variety of medical specialists. Brain injury survivors “are so steeped in the medical environment,” Lukow says, that they’re used to practitioners telling them what to do. Professional counselors can be the first to flip that narrative and ask the client what they want and need.
Lukow, who spent three years as a postdoctoral fellow researching TBI at Virginia Commonwealth University’s (VCU’s) Traumatic Brain Injury Model System program, says he has had clients break down in tears because he was the first professional to ask them about their wants and needs since their injury.
A professional counselor can be the one to “honor what they want and empathize with them and help them understand this huge shift in their life that has occurred in a blink of an eye,” Lukow says. “This work takes a lot of patience, a lot of reframing. But some of my most appreciative clients have been TBI survivors.” In counseling, “they’ve finally found someone who doesn’t make them feel like a burden or judged.”
A difficult road
The Centers for Disease Control and Prevention estimates that on any given day, roughly 176 people die and 611 people are hospitalized in the United States because of a TBI.
The Brain Injury Association of America (biausa.org) defines TBI as an “alteration in brain function, or other evidence of brain pathology, caused by an external force.” One of the most common causes is falls, but TBI can also result from motor vehicle accidents, sports/recreation or workplace injuries, child abuse or intimate partner violence, blast injuries during war or disaster, or acts of violence such as assault or gunshot wounds. Nontraumatic (or acquired) brain injury can occur from a stroke, seizure, meningitis, lack of oxygen, exposure to toxins, pressure from a tumor, drug overdose and other scenarios.
Research suggests that certain populations are more likely to be affected by TBI, including veterans and members of the military, racial and ethnic minorities, survivors of intimate partner violence, those who live in rural areas and people who have experienced incarceration or homelessness. According to a recent article published in JAMA Network Open, it’s estimated that between 9% and 28% of U.S. soldiers who served in the conflicts in Iraq and Afghanistan experienced a TBI.
Not only do the causes and severity of brain injury vary, but each survivor will also have a different recovery trajectory and array of symptoms depending on which areas of the brain were affected, the person’s age, the support and treatment they received during recovery, and numerous other factors.
TBI “is anything but cookie-cutter,” stresses Michelle Bradham-Cousar, a licensed mental health counselor and certified rehabilitation counselor who recently completed a doctoral dissertation on counseling clients with TBI.
Not only will these clients’ needs and presenting concerns differ, but their therapeutic expectations, outcomes and what can be counted as “successes” will also vary, says Bradham-Cousar, who has a private counseling practice in Tampa, Florida. For one client, success may be returning to work full time; for another, it may be learning to calm down to keep from getting into fights with other residents of their group home (as was the case for one of Bradham-Cousar’s TBI clients).
“Success needs to be measured differently for each client — and it won’t look the same as your last client” with TBI, she emphasizes.
Lukow agrees, noting that benchmarks or signs that counselors may associate with improvement or growth in their other clients may not be apparent — or appropriate — with clients who have experienced a brain injury. Also, what might seem to be resistant behavior in this client population is often not intentional, he stresses. They may miss sessions or be hard to contact, but this is more likely to be caused by the memory and cognitive challenges they live with (e.g., confusing what day it is) rather than resistance.
People who have experienced a brain injury will often hear well-meaning friends, family members, caregivers and even medical and other practitioners reference “bouncing back” when talking about their recovery. Lukow urges counselors to avoid using the phrase “bounce back” with these clients because there is no way for them to fully return to the life they had before their brain injury. Not only is such language unhelpful, but it can also give the recipient a sense of false hope.
Lukow instead uses the phrase “bounce forward” with his TBI clients. “In many cases, they can’t go back; they can only bounce forward,” says Lukow, who lives in Tennessee and works remotely as a staff counselor at a private practice in Williamsburg, Virginia.
Although these clients can’t go back to the way things were prior to their injury, they can work to move forward and make the most of their life with impairments through the support they receive and the skills they learn in counseling, Lukow says.
And these clients don’t always want or need encouragement, Lukow adds. At times, TBI clients may feel that the work they’re doing in counseling sessions only emphasizes what they have lost.
“Don’t always be a cheerleader,” Lukow urges. “Sometimes they don’t need to hear ‘that’s alright, you’ll get through it’ [from a counselor], but instead, ‘that really sucks.’”
Lukow specializes in counseling clients who have experienced TBI. He estimates that 10% to 20% of his current client caseload is recovering from a brain injury. During his time as a researcher at VCU, he developed resilience-based interventions for mental health practitioners to use with couples and individuals after a TBI.
It’s not uncommon for individuals recovering from a brain injury to be told by medical personnel, rehabilitation specialists and others that recovery ceases after a few years. An often-repeated message is that the only gains a person will make after a TBI are those made in the first two years, he says.
Although that may be true for some of the physical aspects of TBI recovery, growth and progress in other arenas — especially the emotional and psychological aspects — can continue for years and even decades, Lukow says. He has seen TBI clients make strides many years after their injury, especially in coming to accept that they may never get some of their abilities back and will need to rely on aids, such as memory reminders, for the rest of their life. Learning and growth can also happen years later for clients related to their social skills and in responding to awkward questions and assumptions made by others. (Lukow explains that these situations occur because TBI is often an “invisible” injury and people misjudge or misunderstand the actions or challenges of survivors because they don’t look disabled.)
Hillel Goldstein, an LPC with a private counseling practice embedded within the Brain Injury Foundation of St. Louis, agrees that recovery can occur long after the period of intensive treatment TBI survivors receive immediately after their injury. Goldstein once counseled a client who developed aphasia (language difficulty) after a TBI. This client, with the help of a speech therapist, was still relearning and mastering new words 10 years after his injury, Goldstein recalls.
“The good news is that brain plasticity is much better than we once thought it was,” Goldstein says. “But people are still told that they have a year to improve or a limited time.”
Asking the right questions
Individuals can experience an array of symptoms and difficulties after a brain injury that dovetail with mental health or the client’s presenting concern in a wide variety of ways. Because brain injury varies from person to person and there is no one concise set of symptoms, professional counselors must know some of the more common symptoms (e.g., memory loss) and — perhaps, more importantly — how to ascertain whether a client may have experienced a brain injury in the past.
Brain injury is nuanced and complicated, and there is a good deal of misunderstanding about it among the general population, Lukow asserts. Clients may come into counseling without realizing that their presenting concern (such as trouble maintaining relationships) could be tied to an unacknowledged brain injury or one that happened in the past.
Lukow points out that a person wouldn’t necessarily have needed to be hospitalized or even received a blow to the head for a brain injury to have serious consequences. A car accident, for example, can cause a person’s head to move so forcefully that the brain impacts against the skull without the head touching any part of the car.
Or clients may not realize that brain injury can be cumulative (e.g., “I had a few concussions back when I played lacrosse …”) and affect them later in life, Lukow says. He advises counselors to ask clients not only if they have had any brain injuries but also whether they have experienced any related issues such as a loss of consciousness, cognitive difficulty, a head or sports injury, or a fall.
Bradham-Cousar, a clinical assistant professor in the Department of Counseling, Recreation and School Psychology at Florida International University, urges counselors to listen for client language that may indicate they have had head trauma, including phrases such as “concussion,” “woke up a little while later,” “unconscious,” “got stitches,” “car accident” and “slipped and fell.”
Past brain injury can cause behavior and other deficiencies that are hard to pinpoint or connect to a diagnosis or for which psychiatric medicine doesn’t seem to help. Bradham-Cousar provides examples such as a person who has trouble understanding social cues but does not have autism spectrum disorder, someone who has reading difficulties but does not have a learning disorder, and someone who struggles with attention span and focus but does not have attention-deficit/hyperactivity disorder. In other examples, an individual may struggle with anger, self-control, problem-solving, object recognition or articulating what they’re trying to say and not realize that a past brain injury could be the root cause, she adds.
Goldstein advises counselors not to overlook issues that the client feels are “minor,” such as a concussion, because these could be contributing to their mental health challenges. Counselors should also be aware that in some cases, TBI can cause violent behavior or the urge to self-medicate with alcohol or other substances. So, Goldstein says, practitioners need to be comfortable screening for substance use and be familiar with the reporting protocol for their state in case a client discloses violent behavior (including when the client is a spouse or a family member of a TBI survivor).
TBI survivors sometimes turn to alcohol or other substances to temporarily escape or “slow down” from impulsivity and other challenges, Goldstein notes. However, “one drink for someone with TBI is not the same as it is for someone without [a brain injury]. Their symptoms will be amplified by any substance use, including alcohol,” he explains. “Brain injury and substance use don’t mix. It’s one of the worst things they can do to themselves, but it’s commonly seen among those with TBI.”
The counselors interviewed for this article note that TBI can co-occur with common challenges that bring clients into counseling, most notably depression, anxiety and issues that correspond with loss and relationship problems. And sometimes there can be a chicken-and-egg debate about which of these issues came first, which adds a layer of complication for practitioners trying to assess and plan treatment for a TBI survivor in counseling.
For example, isolation, loneliness, and a loss of meaning and purpose — the classic markers for depression — are common after TBI and the related challenges that come with it, Lukow says.
In these situations, Bradham-Cousar notes that depression is often a secondary diagnosis to a client’s TBI that becomes co-occurring.
At the same time, it’s not uncommon for TBI survivors to be misdiagnosed with a mental illness because some post-injury symptoms can mimic those associated with other disorders, Goldstein adds. Brain injury can cause people to experience hallucinations, hear voices or have severe personality changes, impulse control problems and erratic moods that can resemble mania. This can lead to diagnoses such as personality disorders, psychosis, bipolar disorder or even antisocial personality disorder, Goldstein says.
“I call it [TBI] the great imposter,” Goldstein says. “Mental health [symptoms] are only part of the story. Sometimes it’s the tip of the iceberg, and sometimes it’s not at all what’s going on.”
Because of this, Goldstein recommends that counselors begin work with each client by first ruling out brain injury as the root cause of their mental health challenges. He stresses not to automatically assume that a client’s symptoms are psychiatric in origin. When it comes to mental health diagnoses and TBI clients, false negatives and false positives are very common, he says.
This challenge can be compounded when a client doesn’t recognize or disclose that they’ve had a brain injury (e.g., a concussion that they weren’t hospitalized for), Goldstein says. It’s also likely that the practitioner who referred a client to counseling — whether a medical or mental health professional — hasn’t ruled out TBI as the root of the individual’s symptoms because the connection between brain injury and mental health is simply not on the radar of most professionals.
“Even if a client has a big fat DSM diagnosis, don’t assume, and keep an open mind,” Goldstein says. “I implore [counselors] to rule out brain injury, and even if you think you’ve ruled it out, revisit it. Don’t assume the person that you’re seeing, no matter how they were referred, has a mental health diagnosis.”
Goldstein recommends that in addition to conducting a thorough intake process, counselors screen clients for brain injury by asking for access to their medical records and the ability to confer with the other professionals they are being treated by, such as a neurologist.
“Keep your mind open, and consult, consult, consult with people who are experts in areas that can help you tease apart where these symptoms are coming from,” Goldstein says. “Don’t assume that what you’re seeing is due to a mental health disorder. Your default should be that their brain has been injured.”
Helping clients adjust to loss and change
The crux of what many clients who have experienced a brain injury need in counseling is help adjusting to change and processing loss. Most professional counselors already have an array of tools that can help in this realm, from coping mechanisms and goal setting to the therapeutic relationship itself.
“Often, they need [empathic] listening from a counselor and a large amount of time just to talk about their situation, what they need and what they’re struggling with,” Lukow says.
Any counseling technique or method that builds coping skills or helps clients deal with life changes and loss would be appropriate and helpful to use with clients who have experienced TBI, Lukow notes. This population may also need grief counseling and help with managing emotions and improving communication and social skills. Seemingly small skills, such as being able to politely ask someone to slow down or repeat themselves when they are outpacing the client’s cognition abilities in a conversation, can go a long way to boost the person’s self-esteem, rebuild their relationships and, in turn, reduce isolation, Lukow says.
Stress recognition and management are also important skills for brain injury clients to learn, Lukow adds. Techniques such as diaphragmatic breathing, muscle relaxation, guided imagery and mindfulness, as well as activities such as walking or exercising, painting, coloring, and listening to white noise or ambient sounds, can help these clients learn to calm themselves.
“[Brain injury] survivors are ‘allergic’ to stress,” Lukow says. “When their stress gets worse, their impairments get worse.”
Occasionally involving a client’s spouse, partner or loved ones in individual counseling sessions can also be beneficial for both parties. They provide comfort and moral support to the client in session, Bradham-Cousar explains, and in turn are better able to understand the client’s needs and therapeutic goals. For TBI clients who struggle with memory challenges, having another person in session can also serve to provide them with reminders of what was said and what was assigned as homework.
TBI clients’ loved ones can also benefit from group counseling. The counselors interviewed for this article agree that the supportive environment that group counseling provides can be extremely helpful for this client population and their family/caregivers. (For more on this topic, read the article “Life after traumatic brain injury: Lessons from a support group.”)
Bradham-Cousar specializes in counseling clients who live with disabilities, including cognitive difficulties from a brain injury, stroke or dementia. A large part of what these clients need, she says, is therapeutic work to move them toward acceptance of the change in their lives, including the things they can no longer do. She often uses cognitive behavior therapy and a working
alliance approach to foster trust with clients who are brain injury survivors and adjust their thought patterns and perspective. Counselors can also help the client see the opportunity to gain new skills; they’re not just losing things but gaining them as well, she says.
Grief counseling and psychoeducation about grief can also help this client population process the many losses they have experienced, including the loss of a part of themselves, Bradham-Cousar adds.
“Counselors can help these [clients] to grow and understand their regenerated self and look at it [through] the eyes of a new opportunity, a new chance. They still have a life to live,” says Bradham-Cousar, a past president of the Florida Counseling Association and the American Rehabilitation Counseling Association. “It’s a transformational process. … They need to move forward to accept that they’re not as they used to be.”
Similarly, Lukow finds that using a solution-focused approach, as well as equipping clients with coping mechanisms and skills that can boost their self-esteem and resiliency, is helpful for clients who have experienced brain injury. For instance, a counselor might suggest that a client who struggles with memory issues set up a “launch pad” — a spot in a visible area of the home, such as a kitchen counter, to keep their keys, wallet and other essential items they need when going out so that they’re less likely to forget or lose them.
Much of this work, Lukow says, is supporting clients as they navigate the learning curve of trying new skills, abandoning things that aren’t working for them and finding solutions and workarounds to live life.
For example, a TBI survivor who is unable to drive may struggle with this loss of independence and feel like a burden for having to ask for rides from others. A counselor can help the client process these feelings so that it’s easier for them to ask for help and find solutions that boost their self-worth.
One such solution could be supporting the client as they learn how to take the bus, Lukow suggests. “Help them find a [bus] schedule and look together, asking, ‘Which stop is closest to your house?’ ‘How much does it cost?’ etc. Something as little as looking up a bus schedule can be a success. And with it, a shift in thinking: ‘Yeah, I can’t drive anymore, but it doesn’t mean I can’t get around.’”
Goldstein notes that motivational interviewing can be useful in helping TBI clients to focus on adjusting to change. Influenced by Irvin Yalom and Viktor Frankl, Goldstein also uses an existential approach to guide clients to make meaning of their new circumstances.
This client population “is searching for new meaning in a hugely altered life. They need to construct new meaning, and it’s sometimes not the meaning that they were hoping to construct,” Goldstein says. “These folks need to adjust to ‘the new me.’ They’re forever changed. As with big changes in our lives that are negative, there’s grief, and if we don’t work through the grief, it metastasizes.”
Brain injury often affects a person’s ability to speak. Counselors who work with this population must be knowledgeable of and comfortable using adaptive technology or creative workarounds to communicate with clients who may not be able to respond verbally.
Bradham-Cousar sometimes uses a speech-generating app such as UbiDuo 3 with clients because it allows them to type responses to counseling prompts on a smartphone or other device. She also has an extra keyboard linked to a computer monitor in her counseling office for clients to use to type and display their thoughts during sessions.
Bradham-Cousar suggests that counselors use a collaborative approach by asking clients (during the intake process) to identify adaptive tools or supports they are comfortable using. Counselors can also find information on meeting these clients’ adaptive needs by searching for “brain injury” on the Job Accommodation Network’s website at askjan.org.
In addition to specializing in psychotherapy for brain injury, Goldstein’s subspecialty is helping clients with aphasia. He says that counselors need to be comfortable not only with using different modalities and tools to communicate with TBI clients who struggle with speech but also with long periods of silence in counseling sessions. This can be hard for some practitioners.
Goldstein urges counselors to become sensitive to the wealth of information communicated through a client’s body language and leverage what skills a client does possess. Remember, he says, that these clients have the same range of needs and emotions that verbal clients have; they know what they want to say, but it just won’t come out.
Goldstein sometimes uses a method he calls “facilitated therapy.” He invites another professional who is working with the client (such as a speech and language pathologist) to consult or co-treat with him or come to counseling sessions to serve as a mediator/facilitator until he has forged a bond with the client and learned to “speak their language,” even if it’s nonverbal.
This was the case for one client whose speech was severely limited after his brain injury. However, the client was a gifted artist and would draw pictures during sessions to communicate. When Goldstein began working with this client, he involved the client’s vocational rehabilitation counselor in sessions because she had been working with him for a while and understood the nuances in the way he expressed himself.
“He had his own language,” Goldstein recalls. “He communicated wonderfully; it was just not via speech.”
Once Goldstein established a relationship with this client, they were able to communicate and do one-on-one sessions without the other professional. In addition to drawing and art, the client would play songs he had saved in an extensive library on his phone to express how he was feeling.
“Counselors may have to get creative because these clients [can] have speech limitations and cannot do traditional talk therapy,” Goldstein says. “Look for the gifts they have and use it, use it, use it.”
Counselors working with clients who have experienced TBI also need to be comfortable reaching out to, consulting with and co-treating with a number of professionals in different fields. Depending on the severity of their injury, TBI survivors may be treated by surgeons, neurologists, speech and language pathologists, occupational and physical therapists, social workers and vocational/career professionals, among others.
Goldstein recommends counselors build connections with a base of these types of professionals in their local area so they can consult and ask questions when facing a challenge or sticking point with a TBI client. When treating clients who have experienced TBI, “don’t fly solo,” Goldstein urges. “In this work, it’s not a two-way street [with other practitioners]; it’s a superhighway.”
The counselors interviewed for this article emphasize that counselors should resist the urge to refer TBI clients to a specialist right away. Counseling this client population can be complicated and challenging and it requires lots of patience, but the empathic listening and supportive relationship that a counselor provides can make a world of difference for these individuals and their families.
Goldstein encourages those counselors who are interested in this client population or who thrive working in multidisciplinary teams to think about specializing in counseling TBI clients. “Brain injury is scary, and it puts a lot of therapists off,” he says. “If you see someone with a brain injury and you’re baffled, pat yourself on the back, because you should be. And if you’re intrigued and interested [in this topic], consider it as a specialty.”
Contact the counselors interviewed in this article:
Related reading, from Counseling Today:
Bethany Bray is a senior writer and social media coordinator for Counseling Today. Contact her at firstname.lastname@example.org.
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