When Caring Too Much Hurts by Carolyn Rocchio
When Caring Too Much Hurts
Caring Issues in the TBI Community
Family caregivers are nurturers by nature, but can nurturing too much thwart progress?
Once a family member sustains a brain injury, family caregivers undergo a series of life-changing events that wax and wane as improvement and occasional setbacks occur. Most family members feel compelled to do as much as possible to help the person, and certainly help is vitally important in the early stages of recovery. It’s not uncommon that helping becomes habitual when we are supporting rehabilitation goals. We feel good when we are doing something productive and pat ourselves on the back when we begin to see the “old” person we knew and loved emerge from a seemingly helpless stage.
There’s a fine line between mothering and smothering, and it can be difficult to know when that line is being crossed. Without realizing it, we find ourselves doing more and more as if raising a child from infancy; however, statistically the injured family member is a young adult, more often a male than a female. An unscientific survey of neuropsychologists and other clinicians agreed that family caregivers, although important members of the team, can do too much too often. Following are some of the findings.
In an effort to support their loved one, family members can be unrealistic about the future. But there is a difference between being overprotective and not pushing hard enough toward goals established by the clinical team . We often do too much without allowing our family member to do more for himself. It can be far easier and quicker to do for him than to ask him to try it on his own.
How often do well-meaning family members try to enhance motivation by promising the young man that his car can be repaired and will be ready by the time formal rehabilitation is completed? It can be easier to repair the car than to ensure skills that promote safe driving are preserved. Failure to pass a driving evaluation can put a damper on that plan, at least in the short term. It is better to suggest that although the car can be repaired, there are a number of steps to accomplish before driving is resumed.
We are impatient, sometimes pushing clinicians to do more, without understanding that there are developmental steps to recovery when the brain has been impacted and forever changed physically, metabolically, emotionally, and mentally. We must keep hope alive and adopt a forward thinking outlook. Short and long-term goals established by the treatment team can help set those timelines.
Failure can be Good
Once back home or in the community, we do not allow the survivor to attempt something due to fear of re-injury or because we think it could result in failure. But failure serves a good purpose sometimes, as long as it is safely controlled. Failure allows someone to see more clearly deficits that may persist.
For example, consider the case of a young man who was a bicycle racer prior to injury. The racing bike was ultra lightweight with toe clips in which he had to insert his toes as he began pedaling. The family was aware of the potential for failure but wanted to give him the opportunity to see for himself. A contract was prepared that outlined terms agreed on by family and survivor. He agreed to use a girl’s bike that had no high cross bar over which he would need to balance while throwing his leg over. He wore jeans and a flannel shirt, knee and elbow pads, and a helmet. He was taken to an area with a smooth sidewalk with lush grass on both sides. He seated himself and took no more than three revolutions of the wheels before he could no longer sustain balance and went over into the grass. As he got up, he said he would from then on ride a stationary bike at the gym. Eventually he chose to sell the racing bike.
Sometimes we talk for our injured family member without including her in conversations or allowing her to express her opinions. No one likes to be told what to do, particularly as an adult. By giving choices it allows her more control over her life. Even things as simple as giving her a choice of menus reassures her that we value her opinion. We cannot expect every day to be a banner day, and we should keep in mind that not everything is due to the brain injury. We all have good days and bad days, and we need to consider that some things may be temporary due to a “bad” day.
Care for yourself, too
Lastly we should somehow, some way, take some time for ourselves . The more tired and depressed we become, the less effective we are. Because we are in the middle, we can’t always see progress even as it occurs. Take time to look at the old pictures or reminisce about how far your family has come. Remember, there is no time limit to recovery. Every person recovers at his or her own pace; with adequate support systems, progress may continue, albeit at a slower pace, over a lifetime. Continue to learn and educate yourself. The more you know, the more effective you will be at supporting and advocating for your family.
About the Author:
Carolyn A. Rocchio is first and foremost a mother and caregiver for her son. She is also a nationally recognized advocate, author, and speaker in the field of brain injury. Her expertise in brain injury developed as a result of a 1982 auto crash in which her son sustained a severe traumatic brain injury. She is Founder of the Brain Injury Association of Florida and a member of the Traumatic Brain Injury National Steering Committee, US Health Resources and Services Administration. She served on the 1999 Traumatic Brain Injury Standards Advisory Committee for CARF and is a past member of the Executive Committee, Board of Directors of the Brain Injury Association of America. In 1997 she co-chaired the Family Programs at the Second World Congress on Brain Injury in Seville, Spain.
In Florida, Ms. Rocchio has been appointed to numerous positions to represent families of persons with brain injuries and received a gubernatorial appointment to the Florida Board of Physical therapy Practice and a departmental appointment to the Florida Head Injury Advisory Council. In October, 2003, she received the James H. Bruce Lifetime Achievement Award from the Florida Department of Health, Brain and Spinal Cord Injury Program for her dedication and commitment to enhancing opportunities and services for persons with brain and spinal cord injures.
She is also the recipient of two major national awards: the Jim and Sarah Brady Award for Public Service and the Association of Trial Lawyers of America 1997 Civil Justice Foundation’s Community Champion Award for her advocacy efforts on behalf of persons with brain injury.