It’s a Family Affair: Welcome to the “New Normal”
Following a brain injury the person enters into a system of medical care starting with a hospital’s Emergency Department, then to the ICU and onto to acute care. In the immediate post-accident phase the focus is on stabilizing the patient’s vital functions and determining the medical care which is needed to save their life and preserve function. That phase continues in the ICU with intense monitoring of the person and numerous medical and nursing interventions which may include neurosurgery and other high-tech procedures. The person transitions to a lower level of care, in a hospital-based rehabilitation program or even a free-standing rehabilitation facility. With the high cost of health care, patients are being transferred to in-patient rehabilitation facilities, skilled nursing-based rehabilitation and out-patient programs significantly earlier in their recovery process. What used to be months of medical care is now condensed to less than two weeks from injury to discharge for many people. People with brain injuries arrive in rehabilitation programs “sicker and quicker” often with medical issues related to the early phase of the recovery process. In some cases, they are discharged to home where families are taking on much of the burden of daily living care, which is not easy for someone who is not trained and is not supported in the new burdens they are assuming. The relationship changes between the person and family caregiver. The wife or husband is now a dependent adult who cannot perform the social role they held in the family or work outside of the home. An adult child may return home to aging parents who are ill-equipped to deal with the physical care problems or fully understand their new roles. A mature adult may end up in the home of an adult child with children of their own. With those changes come the grieving process; saying goodbye to the person they knew and hello to a new person. Will things ever get back to normal? If the TBI was severe, the answer is no. Welcome to the “new normal.” Consider just a few of the changes that occur in relationships after a severe TBI:
- Sexual and personal intimacy
- Conflicts between care giving and work
- Independence for the family and survivor
- Financial strains
- Loss of friends
- Physical demands and complications
- Personality changes
- Leisure activities/hobbies
As an example, a recently married couple, both well-educated and earning substantial incomes completely changes when suddenly he or she sustains a TBI. Does the spouse quit work to be a full-time caregiver? If so, what happens to their sexual relationship, social life, occupations, and financial concerns? Maybe there are children in home. Or, the brain injury could delay or end the opportunity to have a family. How involved and supportive are the parents? Everything changes and the “new normal” becomes established. Caregivers are confronted with a new set of problems and challenges. They need information, support and resources to deal with “the New Normal”.
There is help for caregivers. Check out your local Brain Injury Association by going to www.biausa.org or usbia.org for a fantastic resource.