A TBI occurring to one member of a family has immediate and long term emotional, social and financial consequences to the family as a whole. A severe TBI to one member will stress the family, test it and change it forever. Some families are devastated and fall apart. Others pull closer and become stronger in the face of challenge and adversity. The perspective of the family on TBI will always be different from that of the treating doctors. The family has an open-ended horizon and wants to know what comes next, and how do we deal with it? Doctors seek closure. They are concerned with the survival, stabilization and discharge of the patient from the hospital, so they can move onto the next trauma victim.
How much a family should be told at the hospital depends in part upon how much information they want and are ready to handle at that moment. While a few doctors may dump too much negative news, too fast, most err on the side of not disclosing enough and failing to the give the family a detailed roadmap of what lies ahead. In general doctors will meet with the family just before discharge and impart generic “information” about TBI along with a prognosis based on group statistics rather than an individualized study of the patient. Many families are in “denial” about just how impaired their loved one is when he first comes home or at least naive about what is likely to happen.
Very understandably they are thankful he survived, excited to get him back home at last and eager to celebrate every little sign of progress to reassure themselves things will be ok. Statistical studies show the average family does better coping the first year than it does the 5th year out. Between the 1st and the 5th year, progress in recovery slows, and the family comes to understand that certain cognitive and behavioral problems are not going to go away, and that their injured member will remain dependent on them.
During this extended time frame, the family becomes socially isolated because of the huge demands of caregiving and lack of opportunity to socialize with friends. Very often the caregiving spouse experiences clinically significant distress, anxiety, tension and depression, which merits psychological intervention, even medication, for the caregiver.
Caregiver burnout and family deterioration are likely to result in the absence of outside support. How could any family know at the outset how difficult this would be or prepared to meet all the objective and subjective burdens? This is not their fault. There are no courses in high school or college for this, and it is certainly not common knowledge. What can be done to make things easier, and bring hope and help to these families?
Certain types of outside supports have proven valuable in keeping the family afloat. Respite care involves a paid helper or volunteer watching the injured family member, while the caretaker gets to refresh herself with an activity of her choice, be it extra sleep, a movie, a walk in the park or having coffee with a friend. Social skills training to the family member with the TBI is very useful. To the extent he learned things like how to take turns in conversation and how to avoid stressful social situations which cause overload, he can leave the house more to be with others. Job training will improve his self-confidence and self-esteem and provide chances to socialize.
Recreational outings will put some fun back into his life and increase his sense of being part of the community again. Having the injured family member and caregivers participate in a TBI support group is very helpful. This is a place to share common experiences and feel less alone, to learn new coping skills and strategies and become more informed.
The neuro-rehabilitation literature establishes that the skills learned during in-patient rehab are not easily retained or easily transferred to the home environment; and that a great deal of practice, repetition and reenforcement are needed. To make rehab work there must be a direct extension of rehab into the home. Ideally there should be frequent, open-ended communication between treating doctors and family members after the patient was discharged from care. Families find hospital consultations to be of limited value when the doctor is lecturing to or “talking at” them, rather than listening empathetically to their concerns and seeking ways to support them in their role as lifelong caretakers.
What most families says they want is for the doctor to visit the house, see for himself what is going wrong in the actual home environment and coach the whole family on new strategies. What do families have to deal with? Examples include: an adult child who is always late because he constantly loses his keys, wallet or glasses; a parent who cannot be taken to a restaurant or movie theatre because he uses profanity in a loud, booming voice or laughs loudly and uncontrollably at things only he finds funny; a family member who keep touching and poking other people during conversation, who will not stop no matter how annoyed or upset people get at him; or one who seems always to take too much or too little of his prescription medication, getting himself sick in the process, no matter how hard the family tries to devise a system for proper medication use.
These burdens are great but can be handled with the right mixture of patience, humor and a strong belief system, be it religion, the value of self-reliance or other. Organizations including TBI support groups, the state brain injury association and caregivers’ alliances should be contacted and asked for assistance. If there is a personal injury claim, then the attorney representing the brain injured loved one, can also be a source of informational guidance, physician referral, social service referral and emotional support. If workers compensation or the HMO is willing to pay for the services of a case manager, this is a great help, because a certified case manager has access to huge web of services, and knows how to access them at lowest cost.
There is no doubt that the survival and well being of the family are linked with the survival and well being of the family member with TBI. If they become overwhelmed and burnt out, the TBI survivor suffers and so do the other children, whose emotional development can be harmed. But if they get the help they need and grow into their new roles, everyone will make it.