Caring for them while caring for yourself
A practical guide to supporting recovery while protecting the health, relationships, and well-being of the entire family
Becoming a caregiver after stroke often happens without warning. You may suddenly be coordinating appointments, helping with mobility or communication, managing medications, handling household responsibilities, and making decisions while still processing what happened. This guide is designed for spouses, partners, relatives, friends, and others providing unpaid support.
Caregiving can range from occasional transportation and appointment support to continuous help with transfers, toileting, communication, meals, medications, and supervision. The role may also change quickly as the survivor improves, develops new needs, or moves between hospital, rehabilitation, home, and community services. Begin by identifying which tasks are truly needed, which require professional training, and which can be shared.
Whenever possible, include the stroke survivor in decisions. A person may need help in one area while remaining fully capable in another. For example, someone with aphasia may have difficulty speaking but understand the situation and make their own choices. Someone with impaired judgment or neglect may need more supervision than their physical strength suggests. Avoid assuming that communication difficulty, slow responses, or physical disability equals lack of intelligence or decision-making ability.
Create a short written care plan that names the main needs, responsible people, backup contacts, and warning signs that require a call to the healthcare team. Review it after major appointments or changes in function. A shared plan reduces confusion and prevents one person from becoming the default caregiver for every task.
Resource: American Stroke Association Stroke Family Warmline — 1-888-4-STROKE (1-888-478-7653) for information, support, and help locating services.
Stroke may affect language (aphasia), speech-motor control, memory, attention, processing speed, vision, or awareness of one side. These changes can make conversation frustrating for everyone. Give the person time to respond, reduce background noise, and speak directly to them rather than talking around them. Use normal adult language; speaking more loudly does not improve aphasia unless hearing is also impaired.
Supported communication may include yes/no questions, written keywords, gestures, photographs, drawing, alphabet boards, or a tablet. Confirm important information instead of pretending to understand. For example: “I heard that you want to rest before lunch—is that right?” When choices are difficult, show two real options rather than asking an open-ended question.
Cognitive or attention changes may look like stubbornness, carelessness, or lack of motivation. A person with neglect may not notice one side of the plate or wheelchair. Someone with reduced initiation may need a prompt to begin even though they can complete the task. Ask the speech-language pathologist, occupational therapist, or neuropsychologist which strategies match the specific impairment.
Resources: National Aphasia Association and American Speech-Language-Hearing Association: Aphasia.
Before providing hands-on assistance, ask a therapist or nurse to demonstrate the safest method and then watch you practice it. This is especially important for bed mobility, transfers, stairs, bathing, toileting, feeding, and use of a walker, wheelchair, lift, brace, or gait belt. Pulling on a weak arm can injure the shoulder, and trying to catch a falling adult can injure both people.
Swallowing problems may be obvious—coughing or choking—or quiet. Follow the prescribed food texture, liquid thickness, positioning, and supervision plan. Do not change these recommendations because a meal appears to go well. Contact the care team for coughing during meals, wet or gurgly voice, recurrent fever, weight loss, dehydration, or increasing difficulty taking pills.
Medication management is more than filling a pill organizer. Keep one current list with the medication name, dose, purpose, schedule, and prescribing clinician. Confirm what to do after a missed dose and before using over-the-counter medicines or supplements. If the survivor can participate safely, involve them in checking the list, setting reminders, or preparing questions rather than automatically taking over.
New facial droop, arm weakness, speech difficulty, sudden vision loss, severe imbalance, confusion, or a sudden severe headache may signal another stroke. Do not drive the person yourself or wait to see whether symptoms improve.
Resource: American Stroke Association warning signs.
Caregivers often hold information that is not visible during a short clinic visit: falls, missed medications, nighttime confusion, changes in appetite, or what happens when the survivor becomes fatigued. Bring specific examples and a short list of priorities. Ask the survivor for permission before sharing sensitive information whenever possible.
Request plain-language explanations of the stroke type, likely cause, prevention plan, and expected follow-up. Clarify which clinician is responsible for each issue. A neurologist may oversee stroke-related care, while primary care, cardiology, rehabilitation medicine, psychiatry, or therapy clinicians address other needs. If recommendations conflict, ask the team to communicate rather than trying to reconcile them alone.
Caregiver training is part of a safe treatment plan. Tell the team honestly what you can and cannot provide. A discharge plan based on two-person transfers, overnight supervision, or complex medication management is not workable if only one caregiver is available. Ask for alternatives, equipment, home health, respite, paid assistance, or another level of care.
Resource: American Stroke Association caregiver resources.
Caregivers can strengthen recovery by helping practice fit into daily life. The goal is not to become the therapist or repeat exercises indefinitely. Ask the rehabilitation team which activities are safe, how often to practice, what correct performance looks like, and when to stop. Quality, challenge, and consistency usually matter more than simply accumulating repetitions.
Allow the survivor to attempt tasks when it is safe, even when doing so takes longer. Automatically completing every task can reduce opportunities for problem-solving and independence. A useful approach is to offer the least help needed: wait, provide a cue, set up the task, demonstrate, then give hands-on assistance only if necessary.
Connect practice to meaningful goals. Instead of only doing generic hand exercises, practice holding a toothbrush, stabilizing a bowl, or opening the type of container used at home. Instead of walking only for distance, practice the route to the bathroom, mailbox, or favorite community activity. Report pain, excessive fatigue, falls, new decline, or loss of previously gained ability to the rehabilitation team.
Resource: American Stroke Association post-stroke rehabilitation.
Stroke affects more than movement. Depression, anxiety, grief, irritability, impulsivity, apathy, emotional lability, pseudobulbar affect, reduced insight, and personality changes may alter family life. These symptoms can reflect brain injury, the emotional impact of disability, medication effects, sleep problems, pain, or several factors together.
Try to describe observable patterns rather than labeling the person. “He becomes verbally aggressive when the room is noisy and he is tired” is more useful than “He is difficult.” Track timing, triggers, sleep, pain, and recent medication changes. Ask for screening by the medical team and referral to psychology, psychiatry, neuropsychology, counseling, or other appropriate care.
Relationships may shift from spouse, child, or friend toward caregiver and patient. Protect parts of the relationship that are not about care: share music, watch a favorite show, sit outside, or maintain a familiar ritual. Discuss privacy, autonomy, intimacy, and boundaries directly when possible. Family counseling can help when caregiving roles, communication changes, or conflicting expectations create ongoing strain.
Resources: 988 Suicide & Crisis Lifeline; American Stroke Association emotional effects of stroke.
Caregiver strain can develop gradually. Warning signs include sleep disruption, missed medical appointments, chronic pain, irritability, isolation, poor concentration, increased alcohol or medication use, and feeling trapped or resentful. These signs are not evidence of failure; they indicate that the care plan needs more support.
Self-care must be specific enough to happen. “Rest more” is rarely useful without another person covering the responsibility. Schedule concrete protection: one uninterrupted night of sleep, a weekly exercise class, a recurring meal delivery, transportation help, or a family member taking over every Tuesday afternoon. Small predictable breaks are often more sustainable than waiting for a vacation.
Respite care can be provided by relatives, trained volunteers, adult day programs, in-home agencies, or short-term residential services. Ask about eligibility, cost, caregiver training, emergency backup, and whether the provider can safely manage mobility, communication, swallowing, medications, or behavior. Begin exploring respite before a crisis occurs.
Resources: Family Caregiver Alliance; Eldercare Locator (1-800-677-1116); ARCH National Respite Locator.
Vague offers such as “Let me know if you need anything” are difficult to use. Maintain a list of concrete tasks that can be delegated: bring dinner on Thursday, drive to therapy, mow the lawn, stay with the survivor for two hours, research transportation, or make insurance calls. A shared calendar or group message can keep responsibilities visible and reduce repeated coordination.
Legal and financial planning should protect the survivor’s preferences and decision-making rights. Depending on the situation, documents may include healthcare and financial powers of attorney, an advance directive, HIPAA authorization, will, beneficiary information, and emergency contacts. Complete these while the person can participate, and obtain qualified legal advice when capacity, guardianship, Medicaid, trusts, or major assets are involved.
Ask a hospital or rehabilitation social worker about insurance, disability benefits, paid or unpaid leave, Medicaid, Medicare, food and housing programs, transportation, equipment, and home-care services. Keep copies of applications, appeal deadlines, denial letters, bills, and conversations. If care needs are exceeding what the family can provide, discuss in-home help, adult day services, assisted living, or skilled care before safety deteriorates.
Resources: Family Caregiver Alliance services by state; Administration for Community Living caregiver programs; Legal Services Corporation legal-aid finder.
The three most important care needs right now are:
The tasks I need training for are:
The responsibilities another person can take over are:
The next medical or therapy questions are:
The backup plan if I cannot provide care is:
The next date we will review this care plan is:
This guide is for general education and does not replace individualized medical, rehabilitation, legal, financial, or mental-health advice. Care needs and available services vary. Contact qualified professionals for recommendations specific to the stroke survivor and caregiver.
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by Jake Sheaffer
“I once threw a canister of my supplement powder at the wall and dented it. That’s something I can’t imagine ever doing before my stroke, but it’s just another part of my recovery to work on.”
______________________________
On an early October weekend in 2019, Alesha Goodman and her longtime boyfriend Drew hiked over 50 miles of rugged desert landscape in the Ochoco National Forest in Central Oregon. They were on a nine-day hunting trip they’d been planning for months. While Drew streaked up the steep slopes of sagebrush and loose rock, Alesha tarried behind breathing heavily, fighting the searing pain radiating from the base of her skull. An active thirty-four-year-old who frequented local gyms, walked her dog daily, and hiked on weekends, Alesha never suspected the severe neck pain and nausea she’d had for the past week and a half were signs of an impending stroke. And not just one stroke, but two. Two potentially fatal strokes that would occur within an hour of each other the day after she returned from the Ochocos.
An only child, Alesha was close to her parents and her grandmother who lived on her parents’ property later in life. As a kid, she delivered newspapers in her Bend, OR neighborhood, and in her spare time, she wrote children’s books for fun and read voraciously, prompting close friends to refer to her as a “living encyclopedia of odd information.”
On the Monday morning after she got home, Alesha sat in traffic at a parkway off -ramp, still in discomfort from the neck pain and the nausea. She had new symptoms, too, dizziness and feeling faint. Regardless of the pain, she readied herself for work, but she had an uneasy feeling about her job.
Over the weekend, Alesha had received multiple text messages from her employer, a jewelry company in Central Oregon, about an issue with her company email and password, but with no cell reception, she couldn’t respond to her manager’s concerns. After searching through Alesha’s desk for her email password and not finding it, but instead finding an important legal document she’d already dealt with but had not yet disclosed to her boss, the company hired a specialist to get around the digital safeguards. That day, Alesha was let go from her position.
Purchase the Book to Learn More About Alesha’s Journey!