For you, the new
you have a brain injury in your life. A
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
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,
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
as common brain injury problems increased my tolerance.
I could rightly blame the injury rather than Sandy and not take
Locate brain injury resources
Knowledge helps. So
do resources and tools.
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.
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
Get support coping with brain injury
Contact with other survivors and caregivers also
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
You are key
Right now, if your loved one is in the hospital, you may be
feeling adrift, unable to help. Do
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
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
And we are here to help.