Long Term Impact on the Family as a Consequence of TBI Carolyn A. Rocchio Institute of Medicine Workshop on Traumatic Brain Injury July 18, 2005

Emotional Impact Emotional roller coaster Serious lack of family education – Varies from place to place – Families willingness to utilize information Unrealistic expectations for recovery Disruption of family dynamic – Divorce/Separation – Inability to cope Adjustment to personality changes Learning to love a new & different person

Emotional Impact (continued) Reactions of siblings & other family members – Neglect needs of others in household – Overprotection of other children – Declining school performance Mobile mourning/grieving process Role reversal in spousal situations – Uninjured spouse becomes breadwinner – Loss of & changes in companionship Poor access to counseling or family services

Lifestyle Changes Home Modifications – Equipment needs – Permanent/temporary ramping – Retired family in downsized quarters Relocation to access services

Cognitive & Behavioral Impact Most disabling over the lifetime Poor understanding of cognitive deficits Knowledge of survivor’s strengths & weaknesses – Dissemination of info between family & agencies Isolated/ostracized by inappropriate behavior Limited access to community mental health for survivors & family

TBI – It’s No Laughing Matter

Persistent Problems Repeated vocational failures Insufficient day activities for the unemployable Difficulty managing serious psycho/social/behavioral issues Misconceptions about ways to protect individuals with TBI

Financial Impact Availability/exhaustion of insurance dollars Reliance on state or federal programs Limitations of Social Security programs – Long wait for first payment – Difficulty qualifying on cognitive issues alone – Loss of SSI through inherited/gifted funds Families forced from employment to provide care – Loss of employment related insurance Lack respite services in most case (out of pocket)

Health Changing health status of survivor Damaging effects of stress Treatment for depression Caregiver burnout Lack of respite services Parents neglect of their own health Use of drugs/alcohol Insufficient coping strategies

Long Term Issues Managing care after death of parents Lack of payers for long term services Normal life expectancy means years of care Little quality of life for survivor and family Fear

Fear is the leash that leads our lives in usually the wrong direction. Fear often leads us away from the right decision. Some days I do the right thing while thinking wrong. Then other days I do the right thing without thinking at all. Tim Rocchio Survivor Parting Words of Wisdom