Caregiving for a loved one with a brain injury is often a roller coaster of good days and bad days, both for your loved one and you. Often the families are hesitant to ask for help because they think they should be able to handle this, after all this is their sister, brother, father, husband, etc.. - and it is that it is their responsibility to care for him/her. Although understanding of brain injury has improved, the general public does not understand the need for structure and supervision that is a daily task for the caregiver.
Carolyn Rocchio, a mother of an individual with a brain injury states in the February/March 2001 TBI Challenge newsletter, Caregiving is a daunting responsibility - family members have received very little preparation or assistance from the treating professionals before they are expected to fulfill these caregiving duties, which-in many cases-represent a lifelong commitment. Family caregivers face innumerable challenges such as: monitoring the environment for safety; providing assistance with problem solving; planning and implementing socialization and recreational activities; providing external cueing to enhance cognition; establishing structure and schedules; and supervising the individual for psychosocial/behavioral challenges. - She goes on to say that caregivers need to take care of themselves "it is crucial that all caregivers plan some time for themselves." She suggests support groups as one outlet. "Caregivers need to learn how to ask for help is another must. She talks of family dynamics and how to preserve the family unit under the stress of caregiving. "Family caregivers should: (1) not fret about what they cannot change, (2) not burden with guilt those individuals unwilling to help and (3) remember that it is okay for some individuals to feel they must walk away for the problem for their own welfare and survival." Carolyn urges families to find help. In Vermont you can call the BIAVT help line. In conclusion, Carolyn urges everyone to advocate for more services not only for the individual with the brain injury, but also for the caregivers; both family and professional.
Steps to Take:
Educate yourself about brain injury. The BIAVT has a lending library of books written by survivors, caregivers and professionals. The BIAVT website has links to many good websites. There are annual Brain Injury Conferences in VT and NH that are great learning opportunities. Search the BIAVT website for more information.
Find professionals who understand brain injury. There have been cases of individuals with brain injury being diagnosed as being depressed when what was really happening was that their brain was not sending the right messages to the facial muscles for non-verbal communication so they looked like they were sad. A doctor who understands brain injury would ask the questions to get at the cause of the sad look instead of assuming depression. The BIAVT maintains a Resource Directory of professionals who have worked with individuals with brain injury. It is not a recommendation by the BIAVT, simply a list from brain injury survivors and their caregivers.
Attend a support group or start one of your own. The BIAVT has a list of public support groups around the state. Don't judge a group by one time as support group meetings vary from meeting to meeting depending upon the needs of the individuals who attend.
Keep a journal. Studies have proven the therapeutic value of writing down your emotions. No one but you needs to see your journal so it doesn't have to be "pretty' - just get out your thoughts and feelings.
Understand your legal options. Should you consider a form of guardianship for your loved one? Call the BIAVT Help Line to get information on how to get legal advice.
Find some form of respite for yourself on a regular basis. Remember the airplane adage: put your oxygen mask on first - if you don't have oxygen you won't be able to help anyone else put on their oxygen mask. There may be an Adult Day Care option near you that could be utilized. Call your local Area Agency on Aging to find the closest one to you.