Caring for Someone with Traumatic Brain Injury: 10 Tips for Caregivers

According to the CDC, an estimated 2.5 million people sustain a traumatic brain injury (TBI) annually. Older adults are particularly susceptible, so every caregiver should familiarize themselves with ways to prevent TBI. If your loved one or client is recovering from such an injury, they will require unique care. In this article, we cover ten tips for caring for someone with traumatic brain injury.

1. Seek education on traumatic brain injuries.

Get acquainted with the symptoms, treatments and coping strategies. Many resources exist to help and advocate for people with TBI, and some offer advice and education specifically targeted to caregivers.

Brain Injury Association of America:

An organization dedicated to improving the quality of life of people affected by brain injury features a Caregiver Information Center on their website

BrainLine:

A national multimedia project offering authoritative information and support to anyone whose life has been affected by brain injury or PTSD, BrainLine’s site includes content specifically for loved ones and families of people with TBI.

Family Caregiver Alliance:

Serving family caregivers of adults with physical and cognitive impairments, this organization has content for caregivers of family members with TBI.

2. Develop and maintain a daily routine for your client or loved one. 

Keeping their day-to-day lives as consistent as possible will help to reduce the stress and confusion that they might face. If there’s going to be a deviation or a permanent change from the typical routine, discuss it with your loved one beforehand to prepare them to reduce emotional strain and prevent overwhelm.

3. Be mindful of fatigue. 

Everyone gets tired, but your TBI client or loved one may experience fatigue differently, so be intentional with breaks and downtime from external stimulation. Fatigue often occurs more frequently in people with TBI, possibly because they need to concentrate more to complete simple tasks. Three types of fatigue that may strike a person with TBI each require a different strategy:

Physical fatigue:

Stemming from muscle weakness, physical fatigue worsens in the evening and improves after rest. This type of fatigue may improve as the person with TBI returns to more of their regular daily activities.

Psychological fatigue:

Showing up as depression, anxiety and other mood disorders, psychological fatigue is triggered by stress and doesn’t improve with sleep. It may actually be at its worst in the morning.  

Mental fatigue:

Caused by the additional effort required for cognitive tasks, even familiar acts can take more concentration than they did before. This extra workload can lead to mental exhaustion.

4. Actively communicate and listen to the person you are assisting.

Deliberate communication is essential so that you can clearly understand their needs and preferences. Overlooking a request could lead to great irritation and impulsive behavior.

While many people who have TBI don’t need any assistance in communicating, here are some tips to help avoid common challenges:

• Location, location, location: Some people with TBI may have trouble concentrating or organizing their thoughts. If you are in a public area with many distractions, consider moving to a quiet or private location, and try focusing on short-term goals.
• Press repeat: Don’t be afraid to repeat yourself, out loud or or in writing. TBI can sometimes cause short-term memory issues.
• Don’t overstep!: Don’t compromise your loved one’s dignity or sense of self-sufficiency. Wait for the individual to accept the offer of assistance; do not “over-assist” or be patronizing.

5. Be patient and avoid rushing the process. 

The recovery of your TBI client or loved one can be slow and they may even face setbacks. Manage your expectations and be aware that their progress cannot be rushed. 

According to the CDC, around fifty percent of people with TBI will actually feel worse within five years of their injury. BrainLine recommends caregivers be “patient, flexible and supportive” and that they “[t]ake time to understand the individual, make sure the individual understands you and avoid interrupting the person.”

6. Help them with organization. 

Order is a big part of the recovery process of a TBI client. Gently help them to remember appointments, medications, and their daily activities. Below are some strategies for helping someone with TBI stay organized.

Plan ahead:

Have them set aside time each day to plan and organize for the next day and give themselves  enough time to plan activities and record plans.

Use a step-by-step approach:

Encourage them to Break down activities into manageable steps and use checklists to keep track.

Minimize distractions:

Help them Focus on one thing at a time and put things away when done with them.

Write things down:

Keep a calendar or whiteboard in a visible place and help them write down appointments and activities then cross off items as they get completed.

Establish a routine:

Set regular days for weekly activities, like meal planning or grocery shopping.

7. Be diligent with medical records. 

Another aspect of organization, carefully keeping and maintaining medical records will help to ensure effective continuity of care. Also, observe and note any changes in behavior and report them in a timely manner to health professionals. As a caregiver for a member of Mass Care Link, you have access to journaling software and forms to keep track of their progress.

8. Don’t overlook their emotions. 

Individuals suffering from TBI may have a hard time processing their emotions and may react impulsively. Provide emotional support and reassurance daily.  Patients with TBI have a higher occurrence of mental health disorders such as depression. TBI can cause emotional and behavioral dysregulation, including:

• Emotional lability: Sudden, intense mood swings that are difficult to control
• Frustration and anger: They may feel frustrated or angry more quickly, or be triggered by things that didn’t bother them before
• Extreme emotional responses: Your friend or loved one may cry, laugh, or raise their voice in response to a situation
• Restlessness: They may fidget, pace, or move repetitively
• Personality changes: Sudden shifts in personal preference and personality traits can be upsetting for family members and friends of the person with TBI.

9. Advocate for a strong support network. 

Encouragement, warmth, and genuine empathy from loved ones and friends are key to the process. Also, leverage this support network to support your caregiving load. Encourage friends and family help by 

• Helping with errands, chores, and other tasks
• Providing emotional and social support
• Checking in on you
• Helping you manage your own health care needs

No matter how hard you work to care for your friend or loved one with traumatic brain injury, neglecting your own health and well being will only end up compromising their care.

10. Prioritize your self-care. 

To remain at your best you must make an effort to prioritize your own self care. The demanding nature of caring for a TBI patient makes self-care much more necessary. If you are drained, you won’t be able to offer your best. Make time for yourself and do the things you love while offering caregiver support. 

Are you currently offering care to a loved one at home? You are not alone. Mass Care Link can help you secure financial assistance and provide support on your caregiver journey. Contact Mass Care Link at 866-880-8889 or via info@masscarelink.org today to learn more.