ver the two decades of Stroke
Connection, many stroke families
have shared stories like this: In
the beginning, there was fear,
and the fear was overwhelming.
After the fear came courage.
Then we learned about stroke,
rehabilitation and recovery, which
is individual and unique. And
then, finally, came perseverance.
“Stroke is often a shot out of the blue, and that makes it hard
to prepare for,” said Dr. Barry Jacobs, director of behavioral
sciences at Crozier-Keystone Family Medicine Residency
Program in Springfield, Penn., and the author of The Emotional
Survival Guide for Caregivers.
People who haven’t had any experience with stroke don’t
really know what it is, and when it’s happening they are
inevitably confused. Those who recognize stroke is happening
understand it is life threatening, and that causes a lot of fear.
“People often respond to fear with denial or minimization:
‘You’re fine. That tingling will go away soon,’” Dr. Jacobs said.
“Some people are in denial and won’t take action to get their
Knowledge conquers fear, Dr. Jacobs said, but when we
are overwhelmed with fear we’re not good listeners or critical
thinkers. At the moment of shock, the spouse can’t take in much.
As the shock dissipates, spouses are able to understand more of
what’s happened and where the road ahead goes. “When spouses
can have that path laid out for them, their feelings of being
overwhelmed go away,” Dr. Jacobs said. “They know that there is
a prescribed path and there are people who are knowledgeable to
Stabilizing the survivor reduces fear and begins recovery. At
first, there is often a lot of hope because recovery is variable, and
one can always hope for complete recovery. “Since there are a
minority of stroke survivors who do recover fully, that hope is not
unwarranted,” Dr. Jacobs said. However, there
is also no exact science to know how fully
someone will recover, and that uncertainty is
stressful. So in order to maximize recovery,
survivors need to take full advantage of
the medical resources and rehabilitation
possibilities as early as possible. “There
is a window of opportunity that we want
to take full advantage of,” Dr. Jacobs said. “To maximize that
opportunity, the caregiver has to be supportive. They’ve got to
gain some skills, especially in regard to rehab.” One way that
the spouse can deal with the uncertainty is by becoming part of
the treatment team and taking on a role that is really essential in
improving the survivor’s recovery.
Negotiating the cul-de-sac
It is common for caregivers to feel anger and guilt. If the
survivor didn’t handle his or her health risk factors, the spouse
may be angry about that. But it’s also important to realize
that it is not always possible to know the reasons for a stroke.
“Whatever the cause, anger is not actually going to facilitate the
recovery process,” Dr. Jacobs said. “The pertinent question is,
“How I do I engage my loved one in rehab so they can maximize
their recovery?’ If caregivers direct their anger at their loved ones,
they might impede their survivor’s ability to engage in rehab. I
do think caregivers are justified in feeling anger at times, but that
anger needs to be addressed elsewhere. Lambasting the survivor
can actually be detrimental.”
Caregivers may also feel guilt that they did not do enough
to prevent the stroke. “Guilt is a cul-de-sac,” Dr. Jacobs said. “It
doesn’t lead anywhere. It doesn’t lead people to become better
problem-solvers, it doesn’t lead them to take effective action.”
Bottom line, anger and guilt need to be ventilated elsewhere.
In the beginning the main effort needs to be put into engaging the
survivor in rehabilitation and making a big effort there. That push
is one that will make a difference in the future.
How Not to be
By Jon Caswell
Dr. Barry Jacobs