THE Challenge! Spring 2011

THE Challenge!
Caregiving, Year after Year: How to Ask the Family for Help
(Continued from pg. 11)
Families, unfamiliar with the wide range of impairments that
can accompany a brain injury, tend to confuse a survivor’s
reduced initiation and inability to perform even simple tasks,
such as preparing a meal, with laziness. Their ignorance of the
many challenges caused by a brain injury is something you do
have some control over.
Before giving up on the family, you should try to educate
them about brain injury, in general, and about your loved one’s
specific impairments. For many observers, a brain injury truly
is invisible. They fail to see the mix of physical, cognitive,
emotional, behavioral, social, and communication complaints
that you and your loved one deal with every day. The members
of your extended family, who do not interact with your loved
one often, may honestly see no need for help. It’s likely that only
you know how hard your loved one works to appear “normal” to
others. Only you see him at his worst, at his most vulnerable.
The family also may not understand how much time and energy
you spend helping your loved one. They may not see how much
he depends on you. They may not see the sacrifices you make to
allow him to have a better life. This is no time to be proud. It’s a
time for a frank discussion of how your lack of help is harming
both you and your loved one. You also may suggest carefully
that if your health fails, the full caregiving burden will fall on
the extended family.
So, unless you’ve already tried, now is the time to educate
your extended family. This instruction can take many forms.
It can be a conversation, in person or over the phone. However,
providing literature on brain injury from a dependable source
is a better choice. Written material can be read and reread
and digested slowly. Later, you can describe your loved one’s
impairments and your continued efforts to help him within the
context of the written material you have strongly encouraged
the family to read. One resource is BIAA’s website: http://
www.biausa.org/brain-injury-family-caregivers.htm.
A powerful educational tool, if you have it, is the report of your
loved one’s neuropsychological testing, which is often performed
during rehabilitation. Neuropsychological testing identifies a
person’s core disabilities, such as impaired memory, attention,
concentration, initiation and executive functioning. Many of the
challenges faced by your loved one can be traced back to one or
more of these core impairments, which often are permanent.
You also can ask extended family to meet with one of the
medical professionals treating your loved one. Or, they can visit
a brain injury support group, whose members will be more than
happy to educate them.
I’m not suggesting that education is guaranteed to get more of your
family involved in your loved one’s care. But it may, and if only
one family member begins to help, it will be well worth the effort.
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THE Challenge! | Spring 2011