Caring for stroke survivors’ needs is a big, often full-time job. Therefore, it is essential that caregivers also take the time to prioritize their personal needs and care for themselves. Taking much-needed breaks and reaching out for help and support is critical for caregivers’ well-being when looking after a stroke survivor.
Community resources, such as respite care, support groups for stroke survivors and caregivers, adult day care, home health services, meal programs, and homemaker assistance help both the stroke survivor and the caregiver.
So Where Do You Get These Resources?
The first place to start is asking the nurses, doctors, therapists on your stroke survivor’s care team, or those who are treating your loved one for information and any additional local resources.
National stroke organizations also offer both online and offline assistance. Many provide online forums and reference materials on everything you need to know about stroke, its treatment, and the rehabilitation process. Some also offer community support for stroke survivors and caregivers.
Furthermore, these organizations provide tips for daily living, ways you can recover your independence, and how to cope with your new normal. Others produce and update recovery guides, publications, facts sheets, and other supplemental products and materials to help both the stroke survivor and the caregiver.
Some of these organizations include:
- Stroke Support Association: Empowers stroke survivors, their families, and caregivers with resources and support to recover and rebuild their lives through group meetings and education.
- American Stroke Association: Offers information on stroke and sponsors support groups and programs throughout the U.S. for stroke survivors and their families, including a stroke support group finder local to you.
- American Stroke Foundation: Helps stroke survivors, caregivers, and families improve their overall quality of life.
- The Stroke Network: Offers online stroke support, information, and resources.
- The Internet Stroke Center: An independent web resource, it provides information and facts about stroke care and research.
- Family Caregiver Alliance: Offers free resources, education, and assistance (through CareNav) to primary caregivers and the people under their care.
- Next Step in Care (United Hospital Fund): Contains information and advice to help healthcare providers and family caregivers plan transitions for stroke patients.
- AbleData: Provides objective information about stroke assistive tech products and rehabilitation equipment.
- Centers for Disease Control: Offers facts and statistics on stroke-related topics.
- OHSU Brain Institute: Conducts research on harnessing brain waves to help return communication to people living with paralysis.
- Rehab Without Walls: Offers personalized stroke rehab to address physical, cognitive, and emotional recovery. Its post-stroke rehabilitation involves a team approach comprised of several cooperating specialties, plus family member education and involvement in the recovery and rehabilitation process. It also focuses on achieving long-term, real-world goals.
Community support for stroke that includes support groups and resources is essential in helping survivors recover better, re-socialize, and integrate back into their local communities. Unfortunately, a study found that stroke prevalence in rural areas is 1.45 times more than in urban areas, yet peer support groups are fewer.
The Stroke Support Association (SSA)
Based in Long Beach, CA, SSA offers resources, information, and community support for stroke survivors and their families. The organization provides free, separate support groups on Tuesdays for stroke survivors and caregivers. Due to the COVID-19 pandemic, SSA has for the time being converted its in-person group meetings to the Zoom format. Learn more about how to join a meeting here.
Categorized in: Stroke Symptoms & Updates