|Dr. Constance Uphold
As a long-distance
caregiver, the RESCUE website and project have a special
meaning to me. I have a mother who is 86 years old and
has both cognitive and physical
disabilities. The Stroke Caregiving Fact Sheets
and RESCUE newsletters on the website have increased my
understanding of the issues faced by caregivers and have
helped me learn to better cope
with the changes my mother and my family are experiencing.
a long-distance caregiver, I feel guilty
that I cannot frequently visit my mother and cannot provide
day-to-day care, such as going with her to healthcare visits,
laundering her clothes
and providing physical care. My sister,
the only local caregiver, is burdened with the bulk of
caregiving responsibilities. With today’s technology, it’s
easy for me to keep in touch with my mother and my sister, who often needs someone
to talk to about the daily stressors of caring for an older parent. I
try to be supportive and always remember that my sister is the best
judge of what my mother needs.
Through working on the RESCUE project and learning about
empowering caregivers, I have taken responsibility for
caregiving tasks that I can do from a distance. For
instance, I am in charge of communicating with the physicians,
nurses, social workers, and physical therapists about any
healthcare problems that arise. I am also the person
responsible for arranging services and hiring personnel to help with my mother’s
As my sister, mother, and I have gradually met the
challenges that inevitably occur as we all get older,
we have grown together as a family.
- Constance R. Uphold,
RESCUE Project Principal Investigator
Before I had my stroke, I knew nothing about them. Who
they target, how a person can lower the risk
of one… how therapy and a healthy lifestyle
can help you regain what stroke took from you.
I learned words I never heard before—words like ischemic,
aphasia, caregiver. Ah yes, caregivers. The people who are by your
side and the people who help YOU, the stroke survivor.
My caregiver is my wife, Denise. I remember how excited
I was when she would
come every evening to visit me in the hospital. I have
twin boys who are now almost
seven. They were barely two when I had my stroke. She
brought them, too. It was so great to see them.
brings me to this book [the RESCUE book]. I wish I
had it when I had my “event.” I
wish my wife had it. It is just what it says,
a lifeline, a guide to help you navigate through rough waters.
It helps you avoid those icebergs that are out there,
and tells you what to do when you hit one. Don’t worry, we all
do sometimes, but this book helps to minimize the damage
Caregivers are the closest to a stroke survivor.
They know their ups, they know their downs.
This book is a good tool—like a dictionary—to help
you in the aftermath of a stroke. It also
helps you to avoid them as well. The operative word
is help.We can all use it. A Lifeline for Stroke Caregivers provides it.
- Mark McEwen
Television Personality, Stroke Survivor and Stroke
memoir, Change in the Weather: Life After Stroke,
describes his life before and after his
stroke. His book also delivers a
hope to other stroke survivors and their caregivers.
|My Dad, a U.S. Army Veteran
As a member of the “Resources and Education for Stroke
Caregivers’ Understanding and Empowerment” (or RESCUE) Project Team, May is always marked on my
calendar as National Stroke Awareness Month. It is also a memorable month
because my Dad, a U.S. Army Veteran, suffered a stroke in May of 1998.
On that day, my family became one of the four out of five families in
the United States that are affected by stroke, and my Mom became a stroke
My Dad survived the stroke, but he was partially paralyzed
on one side of his body and could not speak. He spent countless
hours in physical therapy and speech therapy, and over
time, he was
able to walk again, and speak again, and even drive again—but
he was never 100% of where he had been before. Because
of his physical issues and his problems communicating,
my Dad would become
frustrated, angry, and depressed. He knew that his life
would never be the same.
As his caregiver, my Mom shared my Dad’s frustration
and faced her own challenges. Her life was also forever
changed by the stroke. Like many caregivers, she
had to balance this new role with her full-time job and
In May of 2003, my Dad volunteered to be part of a research
study at the VA’s Brain Rehabilitation Research Center
(BRRC). The BRRC, located in Gainesville, Florida, was
in the building next to where I worked, so my Dad lived
with me and we drove to “work” together that
summer. This was a great opportunity to provide some much
needed respite for my Mom, and for me to gain a new perspective
and a deep appreciation for my Mom as a caregiver.
My Dad and my Mom have been a great inspiration and motivation
for my work on the RESCUE Project. If my Dad was here today,
I believe that he would be pleased by the RESCUE website.
He would see what a valuable resource it is for
stroke survivors and their caregivers. He would have recognized
how helpful the RESCUE website would have been for my Mom
when she became a stroke caregiver. My Dad would also wish
that there wasn’t a need for a RESCUE website. He
would want other Veterans to learn from his experience, to be aware of the
risk factors for stroke, and to take the steps to prevent
- Kristen Wing
RESCUE Project Team Member
These materials were created for the project:
Web-Based Informational Materials for Caregivers of Veterans Post-Stroke
Project Number SDP 06-327 funded by VA HSR&D Quality Enhancement Research Initiative (QUERI); Supported by the