When a concussion or other traumatic brain injury (TBI) occurs, the life of the injured individual can change dramatically overnight. With an estimated 2.8 million people in the United States sustaining a TBI each year, increasing concussion awareness in our communities is essential in order for us to provide real support to those suffering with these injuries. It is also important to raise awareness about the challenges of some unsung heroes we interact with every day: TBI and post-concussion caregivers.
November is National Family Caregiver Month
This month is National Family Caregivers Month, and we would like to take a moment to bestow our thanks to caregivers everywhere for all that they do. They give their time, effort, dedication and love selflessly, and they make the world a better place for countless people living with serious health challenges. With Thanksgiving almost here, we’d like to take this opportunity to lend support and give a shoutout to these folks on the frontlines of TBI and post-concussion recovery.
What Kinds of Problems Do Caregivers Face?
Caregivers are often a crucial component in someone’s brain injury recovery process. They are unsung heroes, but this role can be exhausting. Caregivers are susceptible to things such as burnout, mental health issues, and decline in overall wellbeing. It is important to be aware of challenges caregivers can face, and to offer much-needed support as they navigate these new challenges.
The brain injury recovery road can sometimes be a long and winding one, and caregivers are often riding in the passenger seat. People with post-concussion syndrome (PCS) and other brain injury patients can experience issues with mental functions (memory issues, lost reading and writing skills, irritability, etc.). They can also experience physical symptoms (headaches, migraines, neurofatigue, problems with balance, coordination, vision, hearing, etc.), and even mental health issues, such as depression and anxiety.
Personal Health Risks Caregivers May Face
Sometimes, as a result of their focusing so much on their caregiving duties, caregivers report experiencing:
- Sleep deprivation
- Lack of exercise
- Poor eating habits
- Failure to take care of their own healthcare and medical appointments
The negative effects of the stress and overwork that caregivers sometimes face can cause real health problems. Compared to non-caregivers, they may be at an increased risk for:
- Depression
- Substance abuse
- High blood pressure
- Obesity
These negative health risks aren’t just for those caring for severe TBI patients. In fact, a 2017 study published in the Cureus Journal of Medical Science found that the severity of the injury has no recorded measurable influence on the distress levels of caregivers.
Social Changes TBI and Post-Concussion Caregivers Face
With issues of light sensitivity and sound sensitivity, TBI and post-concussion patients often cannot attend family functions, like weddings, holidays and graduations, the way they used to. They may have difficulty going to the movies, concerts, sporting events, amusement parks and other social activities that are the usual family fun times. This often means that caregivers must alter their social plans as well.
When a TBI results in vestibular imbalance, travel may need to be restricted too, especially by car. Automobile travel may be limited to 30 minutes or less during concussion recovery to avoid severe migraines and dizziness. This often impacts vacation plans, and thus impacts friends and family of the person with the brain injury. This can lead to feeling isolated for both the patient and the caregiver.
“When possible, we advise patients to still attends weddings, vacations or other family events, even if it has to be in a modified or limited fashion,” says medical director and founder of Mid-Atlantic Concussion (MAC) Alliance, Vincent Schaller, MD, DABFM, CIC. Caregivers can help find a workable compromise for their TBI-affected loved one, including:
- Using decibel reducing ear plugs to help with sound sensitivity
- Wearing sunglasses or a brimmed hat to deal with light sensitivity, even when indoors
- Selecting a vacation destination closer to home to allow them to tolerate travel
TBI and PCS patients are already isolated from work, school, athletics, friendships, etc. on a daily basis, so attending family events, vacations, outings in some way can be very therapeutic, says Dr. Schaller.
Changing Relationships Affect Concussion and TBI Caregivers
Caregivers might also have to deal with changing relationships in the family or household as dynamics shift in after a loved one has experienced a TBI. A 2022 survey conducted by the British brain injury association Headway found that 70% of TBI caregivers felt their relationships have been affected by their loved one’s injury.
There can be negative impacts on relationships in families with a member who has a TBI. This further stresses the recovery for the patient, and it also poses real health risks for their caregivers too. “Caregivers who live with people recovering from a brain injury often don’t get a break from taking care of the their injured loved one, and they still have to work and take care of other responsibilities. It can be exhausting. They need help too,” says Dr. Schaller.
Dr. Schaller notes that long term brain injuries can impact relationships between parents and children or between spouses, both within a household and without. “Interpersonal changes, financial changes and other relationship-dynamic shifts are a lot to deal with while you are already working overtime to care for someone with immediate brain injury problems. For a lot of the patients and families I see, there are real benefits from counseling,” he says.
In regards to any stigma surrounding counseling, Dr. Schaller cautions caregivers not to feel funny about asking for the help they need. “If you are feeling overwhelmed by the changes brought on by a family member’s TBI, counseling can offer you vital support,” he says. “You absolutely deserve it.”
What Are the Signs of Caregiver Burnout?
According to the Cleveland Clinic, caregiver burnout is a state of physical, emotional, and mental exhaustion experienced caregivers. Signs include depression, irritability, fatigue, difficulty sleeping, trouble concentrating, new health issues, and increasing resentment.
As they are busy caring for others, caregivers can often overlook their own physical and emotional wellbeing. Dr. Schaller says that some factors that can lead to caregiver burnout are:
- Unrealistic demands and/or expectations
- Feelings of isolation or loneliness
- Change in roles within the family
- Loss of control over one or more aspects of “normal life.”
- Not recognizing growing levels of stress
5 Tips for Caregiver Self-Care
Self-care doesn’t always come naturally, especially when someone is in a caregiving position. Here are some tips from MAC Alliance for engaging in self-care as a caregiver.
- Prioritize your own personal health. It’s important to maintain a balanced diet, get adequate sleep, and take care of your own medical needs. Your wellbeing matters!
- Set aside alone time every day. Take a bit of time every day to both recharge and do things you enjoy. If possible, schedule this personal time every day to ensure that you don’t overlook it.
- Keep an eye on your mental health. And seek professional support when needed. Research shows that professional counseling and therapy are a key component of caregiver well-being.
- Don’t be afraid to ask for help. Don’t feel like you are burdening others by reaching out to your support circle and greater community for help in your caregiving duties. When asking for help, be specific in communicating what you need help with, and ask a variety of people rather than just one.
- Be KIND to yourself! You are doing a formidable act of care, and you should recognize your own efforts and accomplishments. Be as gracious and understanding with yourself as you are with the person you are caring for.
Remember that TBI and post-concussion syndrome patients can get better with the proper rehabilitation services and medical management. Things can and will improve, and limitations will lighten up over time. So don’t give up!
Why It’s Crucial For Caregivers to Take Care of Themselves
Taking care of yourself as a caregiver is so important for you and your whole family, for a number of reasons.
- You’ll be happy and healthier, and this overall wellbeing will have a direct impact on the success of your caregiving and relationship with the individual you are caring for.
- You’ll have more energy and vitality, making it easier to complete daily tasks.
- You’ll help reduce your risk of experiencing caregiver burnout down the line.
Your Concussion Care Team Is Here for You Too
The physicians and other medical professionals responsible for your loved one’s care are also an essential resource in aiding your journey as a caregiver. “The partnership you build with the concussion care team is not only for the wellbeing of the TBI patient, it’s there to support you too,” says Dr. Schaller. “Your health and wellbeing count! Let us know if you are feeling overwhelmed or stressed, or if you need help.”
5 Tips for Better Communications With Your Loved One’s Medical Team
“No two concussions are the same, so there is not blanket treatment, and symptoms and severity vary too,” says Mike Townsend of Chester County, Pennsylvania, who found himself thrust into the role of caregiver to his wife after she suffered post-concussion syndrome after a car accident in 2019. “You and your loved one know that something is not right, but it can be difficult to convince others sometimes—even those in the medical community. You have to stay vigilant and educated about brain injuries, and be the advocate they need.”
To build the best partnership possible between a caregiver and the medical team, Dr. Schaller recommends:
- In your conversations with doctors and other medical professionals, be sure to always ask if you don’t fully understand something.
- Take notes and review anything in your notes that you need clarification on.
- Come to appointments prepared with questions or concerns. Write down a list if it helps.
- Don’t be afraid to voice any concerns with the doctors. You are a window into the patient’s everyday life, so your concerns are important.
- Be assertive about your needs as a caregiver. It’s not self-indulgent: you need to be healthy and informed to be the best caregiver you can be. Plus, you deserve it!
“Many doctors or specialists don’t always have the time to educate families,” says Anne Ricketts, co-founder of Global Brain Injury Association, an international organization dedicated to improving brain injury care, education and awareness. “There is a lot of excellent information available, and we would advise people to educate themselves to prevent assumption and learn as much as they can about what is happening to their loved one”
Caregiver Support Groups for Those Caring for People With TBIs
Caregiver support groups are an excellent way to connect with those who have similar experiences to you, and they can also be a place to get valuable advice and. It can be a comforting feeling to know that you’re not alone too. Check out this list of virtual support groups from the Brain Injury Association of America (BIAA). It has support groups for survivors and caregivers, organized by state or specific needs.
Other national resources include:
- The BIAA Caregivers Information Center: A great resource for both new and veteran concussion and TBI caregivers, this resource will provide you with tools and information, including articles specifically for those caring for people with brain injuries. For those who are new to the caregiving journey, there is even a hotline you can call to speak with a brain injury specialist: 1-800-444-6443.
- Pink Concussion’s Caregivers’ and Parents’ Facebook Group: This group is for those caring for a woman or girl suffering a brain injury and/r Post Concussion Syndrome.
- Severe BI Caregivers: This online support group that meets virtually twice per month to provide support to individuals and families nationwide who care for those suffering from brain injuries. They also host an online community that shares stories, suggestions and encouragement.
- Smart Patients Brain Injury Community: This is an online discussion group for patients and caregivers dealing with traumatic brain injury. Members share help, advice and information about treatments, symptoms and side effects.
Mid-Atlantic Concussion (MAC) Alliance Salutes TBI Caregivers Everywhere
In our practice, we are committed to support caregivers as they navigate their journey alongside our concussion and traumatic brain injuries patients. We are committed to the welfare of our patients throughout the diagnosis, treatment, and long-term management of concussions and TBIs. MAC Alliance knows that this involves not only the individual but their entire support network, and we salute the caregivers of our patients for their dedication and hard work.
To find the nearest MAC Alliance partner to you, click here or call us at (302) 235-8808.
[Originally posted on 11.23.2022]
[Post updated on 11.12.2024]
