United States Department of Veterans Affairs
 Resources & Education for Stroke Caregivers' Understanding & Empowerment

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Testimonials About the

RESCUE Stroke Caregiver Website



Photo of Dr. Constance R. Uphold, Principal Investigator for the RESCUE Project
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.

As 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 care.

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, PhD, ARNP
RESCUE Project Principal Investigator

Photo of Marc McEwen, Television Personality and Stroke Survivor
Marc McEwen

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.

Which 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 of one.

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 Prevention Advocate

Mark's inspiring memoir, Change in the Weather: Life After Stroke,
describes his life before and after his stroke. His book also delivers a
message of hope to other stroke survivors and their caregivers.

Photo of RESCUE Team Member's father, a U.S. Army Veteran who suffered a stroke.
My Dad, a U.S. Army Veteran
who suffered a stroke

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 caregiver.

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 other responsibilities. 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 a stroke.

- Kristen Wing
RESCUE Project Team Member

 


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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
Stroke QUERI