For you, the new caregiver

So, you have a brain injury in your life.  A TBI, stroke,  tumor, brain aneurysm, or other neurological event introduced this menacing and unwelcome intruder.  And you are struggling to understand what its presence will mean.  

As medical personnel care for your injured loved one, you feel adrift - bystander at a grim and confusing procedure where everyone but you seems calm and purposeful.

Coping with brain injury

You hurt.  You feel disoriented, overwhelmed, inadequate.  Perhaps angry, perhaps relieved that your loved one has survived, but definitely scared.  What will life be like now, for them and for you?  How will you cope?  

First, take a deep breath and know that you are not alone.  Along with the millions of brain-injured in this country, there are hundreds of thousands of caregivers to the brain injured, most eager to share their wisdom, experience, concern. 

I am one.  In 1996, my wife Sandy was brain-injured in a car accident that turned our lives inside out.  I struggled with all of the emotions just described.  And quickly discovered that in the aftermath of brain injury, the needs of family and friends are often overlooked.  Little is done to help them adapt to the new person in their midst.  The result is much unnecessary suffering.

Become informed about brain injury

I want to change that.  Living with a brain injury survivor is challenging enough, without ignorance and isolation compounding the difficulty.  It helps to know what to expect.  While each injury is unique, there are many similarities.

Sandy suffered few physical problems and remained communicative.  However, she lost her ability to be socially aware, to know appropriate behavior in social settings.  She could no longer associate names and faces.  Perhaps hardest of all - for both of us! - the smallest thing could send her into a towering rage.  

Recognizing these as common brain injury problems increased my tolerance.  I could rightly blame the injury rather than Sandy and not take personal offense. 

Locate brain injury resources 

Knowledge helps.  So do resources and tools.  Sandy continues to recover.  She has relearned social skills and now only rarely experiences those unsettling bouts of inappropriate anger.  However, she still battles over-stimulation and exhaustion.  Struggles with denial.  And copes poorly with stress. Her ability to organize activities remains compromised, and she requires aids to cope with short-term memory loss.  

Sandy is the first to admit that in the Linley household, life happens in accord with timers, alarms, ear plugs, organizers, medication reminders, and post-it notes! 

Get support coping with brain injury

Contact with other survivors and caregivers also helps.  Sandy and I both belong to support groups, locally and on-line.  They can be true lifelines in times of trouble.  We benefit enormously from having a safe place to vent, and people who can understand.  We come to them for wisdom, guidance, support, and reassurance and have yet to be disappointed.

You are key

Right now, if your loved one is in the hospital, you may be feeling adrift, unable to help.  Do not believe it. Though others are managing the crisis phase of brain injury, as caregiver you will play a major—perhaps the major—role in the recovery of your loved one.  

Use this time to prepare.  Gather information. Locate resources and aids.  Line up a support network.  Caring for a brain injury survivor takes preparation…not to mention resourcefulness, flexibility, pluck, and a thick hide.  But you can handle it.

And we are here to help.