Let’s Talk About Being a Stroke Family Caregiver

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People who assist stroke survivors are often called caregivers. It can be the spouse, family members or friends. Often one person—spouse, adult child or parent—will provide most of the care.

It’s important that caregivers and stroke survivors be “care partners.” The challenges to adjust to your new role may be easier if both share in decision-making. It’s also important to share how you’re feeling.

What should a stroke caregiver do?

There is no “job description” for caregivers. Each caregiver’s responsibilities vary with the unique needs of the stroke survivor. Role changes and new skills may need to be learned.

Caregivers may:

Provide physical help with personal care and transportation.
Manage financial, legal and business affairs.
Monitor behavior to ensure safety.
Manage housework and make meals.
Coordinate health care and monitor or give medications.
Help the survivor maintain and improve learned rehab skills.
Provide emotional support for the stroke survivor and family members.
Encourage the stroke survivor to continue working toward recovery and to be as independent as possible.

Is there assistance for caregivers?

Providing care for a stroke survivor can be very rewarding. But it also can be stressful and frustrating when you suddenly become a caregiver. To be successful, you must take care of your needs.

Breaks are important for you and the stroke survivor.

Depending on the severity of the stroke, the role of caregiver may be too much for one person. It’s important to rely on others when you need to. It can ease the stress of caring for your loved one.

Help may come from family, friends, your place of worship, government and nonprofit agencies and community resources.

These community resources may be helpful:

Adult day care — professional supervision of adults in a social setting during the day.
Adult foster homes — supervised care in approved (licensed) private homes.
Meal programs (Meals on Wheels) — a federally sponsored nutrition program.
Home healthcare aide service — in-home, part-time medical services ordered by a health care professional.
Homemaker and personal care support — supervised, trained people who help prepare meals and do household chores.
Respite care — provides short-term relief for caregivers. It can be for a few hours, days or even weeks. Care may be provided at home, in a health care setting or adult day care.
Stroke support group — education and emotional support for stroke survivors and their family caregivers.

Is training available for family caregivers?

A good place to start is with your local area Administration on Aging. Visit eldercare.acl.gov or call 800-677-1116 to find an office near you.

You also can contact the Family Caregiver Alliance at 800-445-8106 or visit caregiver.org. They can provide information, education and support for family caregivers, including the Family Care Navigator, a state-by-state list of services and assistance.

The Family Caregiver Alliance also offers access to more than 40 free, recorded webinars on caregiver topics under categories of daily care, planning for care and self-care. Visit the FCA webinar library to view all webinars available. You can also visit the FCA’s YouTube channel, which offers numerous caregiving topics and videos in English and other languages, including Chinese, Mandarin, Spanish and Vietnamese.

Caregiver Action Network’s Caregiver Video Resource Center has videos of caregivers talking about their experiences and what they’ve learned. In these videos, family members share discoveries and describe their journeys through caring for loved ones. The Caregiver Action Network also offers several instructional videos for hands-on care.

How can I learn more?

Call 1-888-4-stroke (1-888-478-7653) or visit stroke.org to learn more about stroke or find local support groups.
Sign up for our monthly Stroke Connection e-news for stroke survivors and caregivers at StrokeConnection.org.
Connect with others who have also had an experience with stroke by joining our Support Network at stroke.org/SupportNetwork.

Do you have questions for your doctor or nurse?

Take a few minutes to write down your questions for the next time you see your health care professional. For example:

Is there a stroke survivor support group or caregiver support group in my area?

Do other organizations support caregivers?

We have many other fact sheets to help you make healthier choices to manage your condition or care for a loved one. Visit stroke.org/LetsTalkAboutStroke to learn more