Stroke is the third leading cause of death and a leading cause of adult disability in the United States. Yet, African-Americans as a group are less likely to receive or ask for information on how to decrease, prevent, or manage this disability. As a community, we are less likely to go to a doctor or hospital when symptoms arise. Unfortunately, the needs of the caregiver and the patient then go unmet. The African-American community suffers more deaths from stroke and severe disability than it should. This increase in disability not only weighs on the person suffering from the stroke, it also weighs on the family and friends of the stroke survivor.
This section was developed to provide some ideas and possible solutions to problems that African-American caregivers face when caring for a stroke survivor. These are only suggestions on what can be done to ease the way for the stroke patient, caregiver, and family to begin to function again in the home, family, and community environment.
About this Section
Having been a caregiver of a grandparent who suffered a stroke, I understand the problems and struggles facing African-American families trying to rebuild life after stroke. There is the frustration of not knowing what questions to ask doctors, nurses, and other support staff; confusion in trying to understand the diagnosis and what it means for the patient, yourself, and the family; inability at times to be able to juggle family, job, school, and other obligations, along with the care-giving role to everyone’s satisfaction. You also wonder if there was something we, as a family, should have done that may have prevented this from happening. It was during this time we wished for help, education, and guidance in handling the situation we were in. Unfortunately, we didn’t find much information. And even when we did, it was not specifically written with an African-American audience in mind.
This lack of information is what makes this site so important to the African-American community. The site is created to act as a bridge between hospital, doctor, therapist, and family. It is hoped that this will lead to open communication during a time of confusion and pain. We hope that it may help families talk honestly with each other about what has happened, the changes that can be expected, and how to help each other cope. These are needs that all families have during a time of crisis; it is up to the caregiver and family to make sure these needs are met.
It was a blessing to have been raised in a large family that consisted mostly of aging older adults. I grew up with access to great-great grandparents, aunts, and uncles. This gave me a different perspective on elder care and needs. I was able to witness first-hand the problems and issues older adults had with healthcare. I was able to hear their opinions on issues ranging from long-term care to diet. I heard and saw what was really important to them in their day-to-day lives. I am now able to take these experiences I have gathered and transfer them into a practice of helping African-American caregivers cope with the aging elderly in their lives. My decision to become an occupational therapist was based on my desire to make a difference. I have many roles — as we all do in this life — mother, caregiver, worker, student, daughter, sister, aunt, cousin, therapist, and provider. The ones I am most proud of are those that allow me to help both family and community.
This section was made possible by the vision and direction of Dorothy Edwards and Carolyn Baum of the Washington University Program in Occupational Therapy.