When someone you love sustains a traumatic brain injury (TBI) or concussion, your whole world can change. You are launched into a world of uncertainty about the injury, recovery, and, perhaps, even who your loved one is anymore. So much can change after a TBI.
So where do you even begin? Understanding the difficulties you may encounter can be a helpful first step in the journey.
Every Injury is Unique
Every brain is unique. Every injury is unique. Every recovery is unique. This means that each TBI survivor’s needs will be different in many ways. Because of memory loss, some TBI survivors may appreciate text reminders for appointments or events; however, others may chafe against frequent reminders because it reminds them of their lost independence.
In spite of the differences between each TBI survivor, there are a few things every survivor needs from their loved ones and caregivers. They are counting on you.
Skepticism About TBI and Concern for Recovery
After the accident, you likely took your injured loved one to numerous doctors, all from various backgrounds. Many examinations, scans, tests, and therapies later, your loved one is still experiencing post-concussion symptoms.
At this point, the doctors begin to say that your TBI survivor is “fine” and may need to be put on medication or see a therapist for their imagined “symptoms.” “It’s all in their head,” claim the doctors. And after hearing it numerous times, maybe you too start to wonder if the TBI survivor is just crazy.
After pursuing many treatment options, and seeing little results, you question if anything will ever work. Will it ever get better? Supporting someone when you’re already struggling is a difficult challenge. Giving someone hope, especially when you yourself feel hopeless, is a daunting task.
Changes to the Person You Love Change You
Your loved one may live in a constant state of fear and anxiety, wondering what is the next embarrassing thing they’ll do. They can be difficult to calm or reason with. When bothered by something, or struggling, they will need tools in place to help them feel more connected with the here-and-now. You can help them do this by encouraging them to do something out of the ordinary (splash cold water on their face, do some jumping jacks, play with their hair, etc.)
They may also be in denial regarding the symptoms they are experiencing, or swing from one emotion to another quicker than they did prior to their brain injury. It’s hard to know what to expect.
What you are experiencing is grief. It may feel like re-injury daily. As soon as you think you have accepted this new miserable “normal” you are reminded of who they used to be and how they are no longer capable of the things of the past. Validate that is where they are. That’s okay. They are doing the best they can at that is enough. Learn about the stages of grief and what to expect through this process.
Suicidal thoughts are dangerous after a TBI. In some cases, suicide may seem like the only option. Assess for emotional health as often as you can. This is something you can do as a loved one of a survivor. Suggest they see a therapist to deal with the grief that their brain injury has caused. It would be a great idea for you to see a therapist as well. Brain injuries can affect the entire family.
Those with a TBI Need You / Knowing How to Help
TBI Survivor’s symptoms are frequently blown-off or ignored. You want to fight for them, but you don’t know what to do. Planners, notebooks, journals, text and email reminders . . . maybe you wonder if you’re actually helping. Are all of your efforts making things worse? Your efforts are not making things worse.
There are several additional things you can do to help your loved one after a brain injury:
Help them take steps towards more activity even if it is basic activities that help increase heart rate. A common myth is to rest and continue resting after a brain injury. This may be helpful short term, but hasn’t been found to be beneficial to long-term healing.
Overall, this is an opportunity for you to love and support your loved one in a new way. You are amazing, their strength, and their rock. We appreciate your commitment and thank you for sticking with it.
You represent recovery, healing, and hope. Improvement is possible because you are loving them, taking care of them, and not giving up on them. You make a difference for them, even when you or they are struggling to see it.