For Caregivers

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Caring for a loved one with a neurological disorder, such as a stroke or traumatic brain injury, can be difficult. Watching your loved one struggle with pseudobulbar affect (PBA), particularly undiagnosed or untreated, compounds this difficulty. It is important to remember the PBA is not a psychiatric disorder. It is a secondary
neurological condition resulting from a brain injury. You must be a champion when your loved one loses hope, isolates himself or herself, or appears depressed.

Here are some tips for being a caregiver to a loved one with PBA:

  • If you know someone with PBA, listen to his or her frustrations and concerns, and remind him or her that a physical condition (PBA) – not a mental one – is involved.
  • Accompany your individual with PBA to doctor appointments, when possible. Share your observations about episodes, discuss treatment options, and process the doctor’s advice.
  • Raise awareness about PBA – Talk with family and friends about what it is, what to expect, and what they can do if they know someone impacted by PBA.
  • Take care of yourself – Go for a walk, try a relaxation technique like meditation or breathing exercises, listen to music, or enjoy a cup of tea.
  • Manage your time – Logistics, schedules, appointments and errands – caregiving and otherwise – add up. Get and stay organized! Try an app, use the notepad on your mobile device, or keep a tried-and-true hard copy datebook or paper calendar.
  • Seek out other caregivers to build your own support network – online or in-person.
A woman touching an older woman with a cane
Join our community!

Get your copy of the PBA Self-Advocacy Toolkit

The Brain Injury Association of America (BIAA) produced a PBA Self-Advocacy Toolkit to provide self-advocacy information and resource materials.

The PBA Self-Advocacy Toolkit includes:

  • An overview of PBA, including signs and symptoms
  • PBA Episode Journal
  • Center for Neurologic Study-Lability Scale
  • Fact sheets on how to talk with health care providers, insurance companies, and navigating prescription drug coverage
  • Sample complaint letter to send to your state’s insurance commissioner, if you feel you are being treated unfairly
  • Tips on how to live with and care for someone with PBA.

Fill out the form below to join our community and get your free copy of the toolkit. When you join, you will also receive resources from the Brain Injury Association of America.

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