Family members (“carepartners”) can play an important and valuable role in recovery after a loved one has a stroke. However, this role of caregiving can often increase feelings of burden, anxiety, depression and isolation. While these emotions are very common, they can add to the already challenging role of caregiving. To help you navigate caregiving for your loved one recovering from a stroke, we have compiled a list of resources for your reference.
ONLINE RESOURCES
The American Stroke Association provides links to articles regarding caregiving after stroke (caregivers guide, caregiver burnout, caregiver self-care tips), as well as a link to subscribe to their quarterly digital magazine, Stroke Connection.
The Stroke Family Warmline will put you in touch with a specialist who can provide support, helpful information or just a listening ear. Call 1-888-478-7653 between 8:30 a.m. and 5 p.m. CT Monday to Friday.
The American Heart Association offers information on their website for hemorrhagic stroke, ischemic stroke and caregiver support. The caregiver support section includes an online support network, links to related articles (communication tips, healthy lifestyle tips, coping strategies) and links to order educational brochures (Understanding Stroke, Living with Disability After Stroke, Preventing Another Stroke and Caring for Stroke Survivors) as well as further resources regarding respite care and emotional support for the carepartner.
The National Institute of Health has developed a comprehensive campaign, Know Stroke, to educate the public about risks, signs, and symptoms of a stroke, as well as rehabilitation and recovery from stroke.
AARP offers a helpful guide to creating and following a respite plan to enable caregivers to take much needed rest breaks from caring for their loved ones to care for themselves.
AARP also has a resource guide specific to Atlanta Caregivers.
Help Guide aims to ease some of the challenges inherent to family caregiving in order to make the process more beneficial and stress-free for both the caregiver and the stroke survivor.
The National Alliance for Caregiving strives to advance family caregiving through research, innovation and advocacy and provides caregiving information, including stroke-specific resources, tips on managing care, and support services.
National Institute of Neurological Disorders and Stroke (NINDS) offers scientific-based information on stroke and caregiving, including rehabilitation and long-term care.
Stroke Caregiver Support at DailyCaring focuses on practical caregiving tips, including those for stroke recovery, such as mobility and communication support.
Caregiver Action Network offers various resources for caregivers, including stroke-specific support, and connects you to a community of caregivers.
Stroke Foundation (Australia) Though based in Australia, this site provides globally relevant resources, including caregiving after stroke and stroke prevention tips.
SUPPORT GROUPS
In addition to the online support networks, you may consider joining a local community support group. Having a chance to share experiences, recommendations and ideas with other people in your same situation can be extremely helpful.
The Family Caregiver Alliance supports caregivers of friends and family members with chronic conditions by providing education, advocacy, information and online support groups.
COUNSELING
Individual counseling may also provide an outlet for you to manage your own emotions as well as those of your loved one and other family members. A professional can also help provide perspective if medications may be a helpful option for you if you are struggling with persistent sadness or anxiety. Your primary care physician may be able to refer you to a counselor.
SUMMARY
Takeaway points from themes found in these resources include the following:
- As a caregiver, it is key to take care of yourself. Empowerline.org stated it well: “To support yourself as a caregiver, you should adopt the oxygen-mask philosophy. Take care of yourself before giving care to others.”
- Ask for help. Reach out to other family members or friends for respite care.
- Communicate clearly with medical professionals and your loved one. Understanding your loved one’s condition and needs will help enable you to better care for him or her and lessen the burden on you, the carepartner.