Facing the Challenge: Lessons Learned from Caregivers of Persons with TBI in Alabama

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Facing the ChallengeLessons Learned from
Caregivers of Persons with TBI in Alabama

• Sandra B. Koplon, M.A.
• Director of Community Outreach
• Alabama Head Injury Foundation
• sandykoplon_at_bellsouth.net
• www.ahif.org

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IF ONLY PEOPLE
UNDERSTOOD!!!
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Background Statistics

• An estimated 5.3 million Americans- a little more
  than 2 of the population- currently live with
  disabilities resulting from brain injury (Centers
  for Disease Control and Prevention) (CDC)
• 2 million people sustain a brain injury every
  year
• Each year 230,000 persons are hospitalized with
  TBI and survive

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Background Statistics

• Leading cause of death and disability among
  children and young adults and leading cause of
  death until age 44
• Falls are leading causes of TBI for persons ages
  65 and older transportation related injuries
  lead among persons ages 15-16
• Fewer than 1 in 20 people with TBI will receive
  the rehabilitation that they need

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Definitions

• Traumatic Brain Injury (TBI) is an insult to the
  brain, not of a degenerative or congenital
  nature, caused by an external physical force that
  may produce a diminished or altered state of
  consciousness, which results in an impairment of
  cognitive abilities or physical functioning. It
  can also result in behavioral or emotional
  functioning.

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Definitions

• Acquired Brain Injury (ABI) is an injury to the
  brain which is not hereditary, congenital or
  degenerative. An acquired brain injury is an
  injury to the brain that has occurred after
  birth.

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Causes of ABI

• External forces applied to the head and/or neck
  (traumatic brain injury)
• Most Common Causes of TBI are
• 1 Motor Vehicle Collisions
• 2 Falls
• Anoxic/hypoxic injury- too little oxygen or blood
  flow in the brain (examples heart attack,
  stroke, carbon monoxide poisoning, near
  suffocation

• Toxic Exposure
• (Ex substance abuse, ingestion of lead,
  sniffing or huffing glue)
• Intracranial surgery
• Vascular disruption
• Metabolic disorder
• Seizure Disorders
• Intracranial neo-plasms

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Types of Brain Injury Mild Brain Injury

• Also know as a concussion
• Brief (less than 15 minutes) or no loss of
  consciousness
• A dazed vacant stare right after the injury
• Delayed response to questions or responses
• Disorientation and foggy memory
• Headaches, dizziness or nausea
• Slurred speech
• Usually no major complications
• A normal neurological exam

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75 of all brain injuries are mild
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Mild Brain Injury

• Often persons with mild brain injury do not even
  go to the hospital or seek treatment.
• Symptoms may not appear until later. Post
  Concussive Syndrome can include temporary
  headaches, dizziness, mild mental slowing and
  fatigue.
• Symptoms usually improve over 1-3 months.

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Individuals who have sustained one or more
concussions are 4-6 times more likely to incur
another brain injury.
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Moderate Brain Injury

• A moderate brain injury is one that results in a
  loss of consciousness that can last minutes or a
  few hours and is followed by a few days of
  confusion.

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Severe Brain Injury

• Severe brain injury almost always results in
  prolonged unconsciousness or coma lasting days,
  weeks or even longer.

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BRAIN INJURY IS
UNPREDICTABLE
IN ITS CONSEQUENCES.
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Possible Changes after a Brain Injury

• Thinking Changes
• Physical Changes
• Personality and Behavioral Changes

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Possible Changes After a Brain Injury

• Thinking Changes
• Memory
• Decision making
• Planning
• Judgment
• Processing Speed
• Problem Solving Differences

• Persistence
• Organization
• Self perception
• Inflexibility

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Possible Changes after a Brain Injury

• Physical Changes
• Motor coordination
• Hearing and visual changes
• Spasticity and tremors
• Fatigue and or weakness

• Mobility
• Speech
• Seizures
• Taste and smell
• Balance

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Possible Changes after a Brain Injury

• Personality and Behavioral Changes
• Depression
• Social Skills problems
• Problems with emotional control
• Inappropriate behavior
• Inability to inhibit remarks
• Lack of response to social cues

• Problems with initiation
• Reduced self esteem
• Difficulty relating to others
• Difficulty maintaining relationships
• Difficulty forming new relationships
• Stress, anxiety frustration

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Recovery

• Measured in weeks, months and years
• Generally most rapid recovery is in the first six
  months
• Recovery is slow and often incomplete
• NO BRAIN INJURY IS
• TOO MILD TO IGNORE
• OR TOO SEVERE TO LOSE HOPE

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WANTED Family Caregiver for individual with
TBI-24 hours per day/7days per week/365 days per
year, no vacation, no sick leave or compensation.
Must be flexible! No experience required!
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Job DescriptionTBI Family Caregiver

• Qualifications Willingness to work 24/7 without
  compensation, benefits or vacations. Must be able
  to accept changes in the role you previously
  played in the family, and have ability to cope
  with different family relationships.
• Assume responsibility for the safety and welfare
  of the person with TBI.
• Provide for the individuals skilled medical
  needs which may include administration of
  medication, changing catheters or diapers,
  lifting and turning the individual to prevent
  decubitus ulcers, feeding by tube or mouth,
  monitoring ventilator, providing suctioning as
  necessary.
• Provide personal care, or supervise as necessary.
• Provide social companionship for the individual.

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Job Description (Cont)

• Gather and maintain all medical records, and
  personal records including marriage certificate,
  social security number, birth certificate,
  employment history, health insurance policy, and
  a record of all medical professional who have
  served the individual since the injury. Keep a
  journal of all conversations with representatives
  of all public agencies and service providers,
  legal professionals etc.
• Maintain a predictable, structured household
  routine.

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Job Description (cont)

• Identify needs of the family, and obtain
  resources for the payment of hospital bills,
  overdue rent payments, utility bills, car
  repairs, medication
• Evaluate providers of rehabilitation, nursing
  care, transportation, equipment, medical
  supplies, as well as find resources for payment.
  
• Advocate for the individual by telling his/her
  story and needs, navigating through a maze of
  numerous community programs which often have
  criteria that exclude access to persons with TBI.
  
• Make time for other family members. These may
  include a spouse, young children, elderly
  parents, adult children, grandchildren and
  extended family.

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Job Description (Cont)

• Graciously accept criticism from family and
  friends who just cant understand.
• Avoid worrying about family finances which have
  been significantly reduced by you having to stay
  home to care for the individual with TBI.
• Seek family counseling from a professional who is
  knowledgeable about brain injury.
• Attend Brain Injury Support Group Meetings to
  learn and share information, meet people in like
  situations and obtain emotional support.
• Reduce stress by practicing stress reducing
  exercises and problem solving techniques.
• Encourage the individual to gradually do more for
  himself. Praise him as he succeeds!
• Accept help from family, friends and community
  members especially when they ask what can I do?

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Job Description (Cont)

• Dont take it personally when the individual has
  an angry outburst directed toward you.
• Take care of your health avoiding fatigue, stress
  and subsequent depression.
• Complete extensive paperwork to appeal denial of
  Social Security Disability Income, to apply for
  Child Victims Compensation and Veteran benefits,
  as well as for medication assistance.
• Do housework and pay bills.
• (You fill in the rest!)

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Alabama Head Injury Foundation
Mission To improve the quality of life for
people who have survived traumatic brain injuries
and for their families.

• Services
• Resource Coordination
• Housing Assistance
• Information and Referral
• Camp Programs

• Recreation Day Programs
• Advocacy
• Recreational Support Groups
• Respite Program

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AHIF Respite Program

• Enables the caregiver to take appreciable breaks
  from the constant demands and stress of the
  caregiver role.
• Care is provided by 15 Home Health Agencies that
  have contracts with AHIF.
• First come-First served
• Applications evaluated.

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Respite Program (cont)

• Purchase Orders are issued for 1200 yearly
• Caregiver selects an agency that has contracted
  with AHIF, and schedules hours. HHA bills AHIF
  as service is used and we subtract the amount
  paid from the total of the purchase order.
• Purchase order must be used within a AHIF
  fiscal year.

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Respite Program (cont)

• Assistance Provided HHA assumes duties which
  would have been provided if the Caregiver were in
  the home
• Supervision
• Companionship
• Personal care
• Meal preparation

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Respite Care (Cont)

• Light Housekeeping, when it pertains directly to
  the client such as cleaning clients room or
  doing his laundry.
• When medical needs of the client exceed those
  that may be delegated to a unlicensed personnel
  according to the AL Board of Nursing, a licensed
  nurse may be engaged.

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References

• Alabama Head Injury Foundation
• www.ahif.org
• Brain Injury Association of America
• Brain Injury Community Awareness Presentation
  2000
• www.biausa.org
• Centers for Disease Control and Prevention
• www.cdc.org