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Caregiver Overview

When a person suffers a traumatic brain injury, the entire family is affected. In many cases, caregivers of patients with TBI can feel burdened, anxious, angry, depressed and guilty. It’s not unusual for caregivers to feel overwhelmed by the drastic changes to their lives. Some professionals refer to this as “compassion fatigue.” Because compassion fatigue is very common, it’s important that caregivers do not forget about their own needs. This is vital, not only for the caregiver’s well-being, but for the patient and rest of the family as well. It’s also important that caregivers recognize how stressful caring for a patient with TBI can be, and to seek support services when necessary. There are many resources and people that are ready and willing to help.

One of the key reasons that caregivers have such high stress levels is that patients with TBI frequently have emotional and behavioral problems.  These problems may include:

  • lack of interest
  • anxiety
  • irritability
  • anger
  • paranoia
  • confusion
  • frustration
  • agitation
  • insomnia or other sleep problems
  • mood swings
Difficult behaviors may include:
  • alcohol or drug abuse
  • aggression and violence
  • not following instructions or rules
  • social inappropriateness
  • emotional outbursts
  • childish behavior
  • decreased self-control, called disinihibition
  • inability to take responsibility or accept criticism
  • thinking only of themselves
  • inappropriate sexual activity
These challenges can be short term, or long-lasting, Family members of patients with TBI often find that personality changes and behavioral problems are the hardest disabilities to deal with, even more so than the physical disabilities.

Patients with TBI may seem like a different person after the injury. They may not feel or express appreciation for all that the caregiver does, and this can lead to the caregiver feeling alone and isolated.
Support services that can be helpful to caregivers include in-home assistance from home health aides or personal care assistants, “respite care” to provide breaks from care-giving, TBI support groups, and counseling for caregivers to help adjust to the life altering consequences of TBI. It’s also important for caregivers to use all of the available support systems of family, friends and community members for help with the patient’s care. 

The rehabilitation team members can help caregivers explore local resources, and help design an effective plan prior to releasing the patient with TBI from the rehabilitation facility.

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