Caring for a Loved One With Traumatic Brain Injury

Let’s take a closer look at each of these recommendations — and why they matter — in more detail.

1. Educate Yourself About Traumatic Brain Injury

A diagnosis of a traumatic brain injury can be life-altering event, for both the patient and their caregivers. To better understand the latest TBI research, treatment options, and management techniques — and position everyone involved for the best possible outcomes — you’ll want to consult as many educational sources as possible, including books, podcasts, online and traditional support groups, and professional workshops.

In addition to our Video Library and our 50 State Guide to finding helpful resources that are local to you, here is a list of organizations that specialize in TBI information and support:

• Administration for Community Living (ACL)
• American Occupational Therapy Association, Inc. (AOTA)
• Brain Trauma Foundation
• Centers for Disease Control and Prevention (CDC)
• Center for Parent Information and Resources
• Eunice Kennedy Shriver National Institute of Child Health and Human Development 
• MedLinePlus
• National Institute of Neurological Disorders and Stroke (NINDS)
• National Center on Health, Physical Activity, and Disability (NCHPAD) 
• National Rehabilitation Information Center (NARIC)
• Office of Special Education and Rehabilitative Services
• Academy of Cognitive and Behavioral Therapies
• American Academy of Physical Medicine and Rehabilitation (AAPM&R) 
• American Physical Therapy Association (APTA) 
• American Speech-Language-Hearing Association (ASHA) 
• Brain Injury Association of America (BIAA)
• National Resource Center for TBI
• U.S. Department of Veterans Affairs (VA)
• U.S. Social Security Administration

2. Assemble a Team of Traumatic Brain Injury Care Experts That You Trust

While you’ll likely initially feel overwhelmed by the changing circumstances and new responsibilities related to your loved one’s TBI, you’ll likely feel reassured if you have a comprehensive care plan created by a team of experienced healthcare professionals whose opinions you value. After thoroughly researching and vetting your provider team, ensure that you have a communication plan in place with multiple ways to get in touch for advice and guidance any time questions or concerns arise.

3. Follow Their Medical Advice for Ongoing TBI Care and Rehabilitation

It’s vitally important to adhere strictly to the treatment plan designed by this team, as it will cover many facets of care that work in tandem to provide the best possible outcome for your loved one. This will include regular visits and assessments by the primary doctor, neurologist, and other specialists directly involved in the patient’s ongoing care, but may also cover a host of related therapy programs and services. 

Depending on the severity of the injury and the goals for recovery, the schedule of these appointments can be quite robust, so you’ll want to plan accordingly for any help or support you’ll need along the way. Services required can include any or all the following:

4. Don’t Overlook the Importance of Emotional, Behavioral, and Cognitive Support

Patience and understanding are important tools for caregivers for a loved one with TBI. Mood swings, memory issues, and cognitive and other difficulties can be expected as part of their injury and their journey to recovery.

For this reason, you’ll want to ensure that mental health support is in place — not only for a person with TBI, but for the caregivers. Caregivers may need to engage with a neuropsychologist or behavioral therapist to address changes in the patient’s behavior, and develop their own support system and coping strategies for any difficulties they may encounter.

5. Create a Safe and Supportive Environment at Home

TBI not only physically affect the individuals injured but also have serious emotional and psychological consequences for their families and loved ones. Coping with a TBI can be challenging and emotionally draining and requires understanding, patience, and support. Special attention and care for the emotional and psychological damage associated with TBI is required for both the injured individual and their families.

It’s important to create a living space that not only feels emotionally safe, but is also designed to prevent falls and further injuries. For mild TBI, this might include removing trip hazards, installing grab bars, and ensuring good lighting. For moderate to severe TBI, this may require making ADA-compliant upgrades to ensure your loved one can function safely and comfortably in your home over the long term.

These can include:

6. Maintain Routines and Familiar Schedules

Structure and consistency are key to helping your loved one adapt to a “new normal” way of life. For people with TBI of all ages, that means establishing daily routines to provide stability and predictability. When communicating those schedules, you’ll want to use clear, simple language; repeat information as needed; and compensate for any deficits in memory or organization skills by using aids like calendars, alarms, and written notes. If the person with TBI is a child, you’ll also need to enforce consistent rules and consequences to help manage behavior.

7. Encourage Independence

At whatever level feels appropriate and comfortable for your loved one, promote self-care. Encourage the patient to perform tasks independently whenever possible, helping only as needed. And support the relearning of motor skills and daily activities through regular practice and positive reinforcement.

8. Get Professional Legal and Financial Planning Advice

If your loved one is unable to make legal and financial decisions on their own, you’ll likely need to obtain power of attorney or guardianship to act on their behalf for a wide range of important tasks that include:

• Medical and General Expense Planning
  • Plan for short-term and long-term care needs, which may include home modifications, in-home care, or assisted living facilities.
    
• Personal Injury Claims
  • If you believe your loved one’s TBI is the result of negligence, or medical malpractice, contact an experienced traumatic brain injury law firm [link to CPRlaw.com] as soon as possible to make sure a prompt investigation is initiated, and evidence is preserved, witnesses located, and to understand your legal rights.

• Income Replacement
  • Evaluate income replacement options such as disability benefits, worker’s compensation, government funding, and any liability insurance that available due to negligence or malpractice.
    
• Estate Planning
  • Update wills, trusts, and estate plans to reflect the injured person’s current needs and circumstances.
    
• Special Needs Trusts
  • May be needed to manage the injured person’s assets without affecting eligibility for government benefits.
• Tax Implications
  • Stay on top of potential tax deductions and credits related to medical expenses and caregiving.
• Government Assistance Programs
  • Explore available programs such as Medicaid, Medicare, and local community resources for additional support.

9. Understand Existing Insurance Coverage and Plan Accordingly

You’ll want to review your loved one’s current insurance and benefits to ensure they have comprehensive coverage that addresses both the immediate and long-term needs arising from a TBI.

10. Make Necessary Education and Work Adjustments

If your loved one is a child or adolescent with TBI, they may need their school to implement an individualized education plans (IEP) that accommodates their needs.

If they are an adult who is planning to continue working, they may need special accommodations or vocational rehabilitation to assist with additional job training and employment adjustments.

11. Encourage Social and Community Integration

Staying connected is key to maintaining strong mental health for both patients and caregivers learning to live with TBI. Seek out ways to stay involved in social activities and community programs to promote social interaction and reduce isolation, and lean into your network of family, friends, and community resources to get more comprehensive support.

12. Practice Your Own Self-Care

The emotional and psychological impact on families and loved ones can be extensive and may include:

Caregiver Stress and Burnout: Family members often take on the role of primary caregivers for TBI patients, leading to feelings of stress, exhaustion, and emotional strain.

Financial Burden: The cost of medical treatment, rehabilitation, and ongoing care can cause financial stress for families, adding to their emotional burden.

Changes in Family Dynamics: Coping with the changes in the patient’s personality, abilities, and needs can disrupt family dynamics, leading to conflict and tension.

Grief and Loss: Families may grieve the loss of the person they knew before the injury and find it difficult to adjust to the new reality and uncertain future.

At the end of the day, you won’t be able to provide optimal care for your loved one living with TBI if you aren’t taking care of yourself. Consider the following important recommendations:

• Join a support group for caregivers of individuals with TBI — Sharing experiences can provide emotional relief and practical advice.
• Arrange for respite care — Even a couple of hours a week will allow you to take necessary breaks and prevent caregiver burnout.
• Maintain your physical and mental health — Prioritize eating well, exercising, and seeking professional help when needed.