The Caregiver's Journey

What to Expect

  • For most of us, a “normal” and fulfilling life usually includes things like living independently, spending time alone, working, attending school, volunteering, driving, doing household chores, parenting, dating, and participating in social and leisure activities of our choosing.
  • For a person who has recently experienced a TBI, some or all of this may not be possible right away. The hope is always there that most will be possible, over time.
  • Moving back home is an exciting step in the recovery process! Although the transition to home is certainly positive, it is important to be aware that it may also be stressful at times.
  • There is no way to prepare yourself for what lies ahead. With time, most people with TBI and their families successfully adjust to life at home.
  • Some families report that during the first few days or weeks at home, their family member actually seemed to have taken a step or two backwards. Your family member with TBI needs more time than he or she used to in order to adapt to a new environment, even if it’s a familiar one.
  • Returning to the community, to family, to a familiar setting requires thoughtful planning to insure that the transition goes smoothly. It is important that you work closely with the rehabilitation team to prepare a discharge plan.
  • Skills that your service member/veteran acquired or relearned in rehabilitation do not easily transfer into a home setting without a great deal of support and reinforcement. The therapy team will spend weeks to months preparing you and your family member for this step.
  • You will both have many opportunities to practice and to identify what the challenges might be BEFORE you go home.

Those with TBI prefer structure. They adjust better and thrive when there is some routine and predictability to their days. It is helpful to add structure right away at home by scheduling activities and rest breaks much like the schedule observed in rehabilitation.

  • Over time, as everyone adjusts to being home and your service member/veteran continues to recover and gain skills, the need for so much structure may lessen and more flexibility will be possible.
  • Your family member may be concerned that he or she cannot easily make comfortable relationships with other people because of the cognitive and communication effects of TBI. You may be worried that he or she will behave inappropriately or unsafely because of reduced judgment or impulsivity.
  • Role play potential social situations with your family member with TBI before he or she ventures into community settings. This helps in understanding appropriate behavior.
  • You may also find it useful to help your family member with TBI prepare for and organize trips into the community. Recreational and occupational therapists are your best allies in this effort and they will work closely with you to practice community re-entry.