Traumatic brain injury (TBI) is different in many ways most other injuries and disease. Recovery is as much an art as it is science. The shape recovery takes and the amount of rehabilitation possible depend on the area(s) of the brain affected by the injury. (For a discussion of the effects of injury to various areas of the brain, read last week's article on the basics of TBI.)
Unlike most illnesses or injuries, TBI affect the whole person – who they are and who they consider themselves to be. From physical problems such as balance issues, headaches, and even blindness, to personality changes, to loss of cognitive abilities and memory loss, brain injury can cause a smorgasbord of disabilities. One of the things most difficult for caregivers to deal with is that the waysTBI affects your loved one change over time. It’s a roller coaster ride of ups and downs, both in terms of their progress and your own emotional response.
From the moment you learn that your loved one has suffered a brain injury, your role in their life changes. A spouse may become more like a child than your husband or wife; an independent adult child may become your dependent again. And if the trauma was severe enough, these roles might never go back to “normal” again, because the changes in the brain can be permanent.
What may be harder to deal with is that their role in your life changes, as well. They might no longer be able to respond to your needs and desires as before. Losing this connection adds emotional isolation to the social isolation of others’ not understanding what it’s like to live with TBI. Giving care to someone who can’t respond in kind requires strength of purpose that you might never have needed before the injury.
Changes in roles can affect other members of the family, too. When a parent is brain-injured, the children might need to sometimes act more like a parent than a child, correcting or pointing him/her in the right direction. The spouse might be the primary caregiver, but everyone in the family is, too.
Depending on the severity of the trauma, recovery can take months, years, or a lifetime. Once they’re home, how do you take care of them? What kind of special knowledge do you need? If you work, can you keep working, or do you need to stay home to care for them? There is no single, easy answer that works for everyone, but there are some common issues you may expect to deal with. Learning everything you can about brain injury is the first step.
Relearning everything: Many TBI patients have to relearn the basic skills they learned as a child. In many cases occupational therapists and other professionals will teach activities such as walking, speaking, eating, and dressing, while your loved one is in rehab. Yet in many cases discharge from rehab occurs more from financial considerations than from the patient’s progress. So your loved one may come home with some progress behind them and lots more in front of them. Now it is up to you, the caregiver, to become an instant therapist to shape your loved one’s continuing rehabilitation.
- Self-awareness: TBI often affects a person’s awareness of their abilities, to the point where they may not even be aware that their self-awareness has been altered. Many TBI patients deny that they were injured or that anything is different; some will admit to a disability, but deny that brain injury caused it. It’s important to recognize that your loved one is not being contrary; they truly lack the ability to determine their abilities and act appropriately.
- Supervision: Many times you will need to supervise your loved one constantly until they have made enough progress to gain back their ability to make appropriate decisions regarding their actions. When they think they should be able to drive but still lack the ability to make the instant judgments driving requires, when they want to go back to work but have lost the skills they need to do that work, when they want to get out of the house but lack the self-restraint to control their actions in public, you will have to play the bad guy and mange the control for them.
- Infinite patience: Caregivers of Alzheimer’s patients know that they must summon what seems like inhuman patience to answer the same questions over and over and over again because their loved one doesn’t remember from one minute to the next that they just asked it. You will need to be just as patient with your loved one who gets easily confused by things he used to understand, who gets mad at himself for being unable to perform a task he can remember doing before the accident, who becomes depressed at his lack of progress or the inevitable setbacks.
One of the best things you can do for yourself is to get support. A number of organizations offer training and support to help you learn to live life as it now is.
Ontario Brain Injury Association – http://obia.ca/
Brain Injury Association of Canada – http://biac-aclc.ca/
BrainTrust Canada – http://www.braintrustcanada.com/
Society for Cognitive Rehabilitation – http://www.societyforcognitiverehab.org/index.php