PREVENTION & TREATMENT When someone you love sustains a serious traumatic brain injury often represents the beginning of a new season of life. As with any major change, it is rarely an easy journey.
Depending on the severity of the injury, you may find your loved one needs assistance with the most basic activities of daily life, such as feeding themselves, using the restroom, changing clothes and bathing.
In many cases of traumatic brain injury (TBI), the journey home comes after an extended stay in a hospital, skilled nursing or rehabilitation facility. For weeks — maybe months — life has been an emotional rollercoaster, and through it all you’ve had one goal in mind: getting your loved one home.
In the immediate aftermath of TBI, we often feel grief, fear, and concern. Family and friends flock to be by our side to lend support and assistance. This can mean picking up the kids from school, delivering meals to the house, or bringing snacks to the hospital. People want to help, and more than that they want to express their love and concern.
Unfortunately, even the dearest of friends will eventually have to shift their focus back to their own lives. It does not mean they don’t care or aren’t concerned, but life may seem a bit lonely compared to those earlier days in the hospital waiting room surrounded by people offering to help. Indeed, adjusting to life as the primary caregiver to a partner, spouse, child, parent or friend with TBI is difficult, but with these tips and tricks it isn’t impossible.
1. Stay honest
It is important to be honest with clinicians, family members, and your loved one with TBI about your own needs, fears, concerns and emotions. You may have thoughts or feelings that you’re ashamed of, and it’s important to remember that you are human and these feelings are normal. If, however, you find that these thoughts are impacting your ability to provide care to your loved one, you should seek input or guidance from someone you trust, like a therapist, close friend or relative or minister.
2. Work to understand
Understanding what your loved one with TBI is going through is almost as impossible as trying to show them what you are going through, but it is important to maintain perspective and patience. Rather than trying to understand, make a commitment to work to understand. Trying implies that you attempt and either achieve or give up, but working indicates a constant, ongoing period of growth and development.
3. Acknowledge limits
When you are staying honest you will likely find that you have to have some tough conversations about limits — your own, those held by your friends and family, and of course your loved one with TBI’s limits. Limits may not only be physical, but emotional and financial as well. These boundaries allow you and your family to adjust to and establish a new normal that works for everyone.
4. Seek input
As you adjust to the new normal of caring with someone with TBI, you will find that your circle of relationships grows rather rapidly. Remember to take advantage of these contacts and call on clinicians, your local or state Brain Injury Association, others you’ve met who have sustained a TBI, and certainly your fellow caregivers when you have a question, a concern or a need.
5. Ask for help
There is a difference between seeking input and asking for help. It is essential that you ask for help when you need it, and if you are staying honest you will know when these moments arise. Consider establishing a plan with a local respite care provider or other family members and friends so that if you find you need assistance, you have someone to call. Remember, you are the wheels keeping the bus in motion and, without you, things will come to a screeching halt.