Caregiver Guidance

Section 1

Caregiving is a partnership

Start by asking the stroke survivor what help is wanted and what tasks the person prefers to do independently. Abilities may vary by time of day, fatigue, environment, and task.

When possible:

• speak directly to the survivor, not only to the caregiver;
• offer choices rather than making assumptions;
• allow enough time for the person to try;
• agree on which tasks need help now; and
• revisit the plan as recovery changes.[1]

Safety and autonomy can sometimes pull in different directions. The rehabilitation team can help define what is safe to do independently, with supervision, or with physical assistance.

Section 2

Learn the current plan

Before discharge or a major transition, ask for a written summary that includes:

• the stroke type and current medical concerns;
• an accurate medication list and schedule;
• swallowing and nutrition instructions, if any;
• mobility, transfer, bathing, and equipment instructions;
• rehabilitation and follow-up appointments;
• symptoms that require emergency action; and
• who to call for nonemergency questions.[1]

Ask to demonstrate any hands-on task while a trained clinician watches. Reading a description is not enough for transfers, stairs, feeding adaptations, or equipment use.

Section 3

Support communication

Aphasia affects language, not intelligence. Dysarthria affects speech clarity. Thinking, hearing, vision, and fatigue can also affect a conversation.

Helpful starting points include:

• reduce television, side conversations, and other background noise;
• face the person and speak in a natural adult voice;
• present one idea or question at a time;
• allow extra time without repeatedly answering for the person;
• use writing, gestures, pictures, or yes/no choices when helpful; and
• confirm the message instead of pretending to understand.[1]

The best method depends on the communication problem. A speech-language pathologist can identify reliable ways for the survivor to express needs and participate in decisions.

Section 4

Support safety without taking over

Stroke may affect balance, strength, vision, sensation, attention, judgment, and awareness of one side. The person may need more help in a busy or unfamiliar setting than in a quiet therapy room.

Ask the team to define:

• when supervision is needed;
• the safest walking or transfer method;
• which device should be used and how;
• bathroom and shower safety;
• what to do after a near-fall or fall; and
• whether the home needs equipment or changes.[1]

Do not lift or pull the survivor in a way that has not been taught. It can injure both people. If the recommended plan is not realistic for the home or caregiver, say so before discharge so alternatives can be explored.

If swallowing instructions are in place, follow the exact food texture, liquid consistency, positioning, pacing, and medication directions. Report coughing, choking, a wet-sounding voice, fever, breathing difficulty, dehydration, or inability to take required medicines according to the care team's instructions.[1,2]

Section 5

Organize care without becoming the whole system

Simple tools may reduce confusion:

• one current medication list;
• one calendar for appointments and therapy;
• a short question list for each visit;
• a folder for discharge instructions and contact numbers; and
• a shared plan identifying who can help with transportation, meals, calls, or respite.

Medication boxes, reminder systems, and pharmacy packaging can help some households, but the person responsible and the system used should match cognition, vision, hand function, and the medication plan.

Section 6

Notice changing needs

Tell the care team about new or worsening:

• falls or near-falls;
• choking, coughing with meals, or poor intake;
• confusion, sleepiness, agitation, or hallucinations;
• sadness, anxiety, loss of interest, or thoughts of self-harm;
• pain, skin problems, bowel or bladder changes;
• inability to take medicines or attend care; or
• loss of a skill the person had regained.

Not every change is “just the stroke.” Infection, medication effects, sleep problems, pain, dehydration, depression, seizures, or another medical problem may need evaluation.

Section 7

Care for the caregiver

Caregiver strain can affect sleep, mood, physical health, work, finances, and relationships. Feeling overwhelmed does not mean that a caregiver is failing. It is a sign that the plan may need more support.[1]

Consider asking about:

• home health, outpatient, or community rehabilitation resources;
• social work or case-management help;
• caregiver education and support groups;
• respite services or shared family schedules;
• transportation and financial assistance; and
• personal medical and mental-health care for the caregiver.

One person should not be expected to provide unsafe physical help or continuous care without relief. Tell the team clearly what support is and is not available.

Section 8

When to get urgent help

Call emergency services for a new sudden face droop, arm or leg weakness, speech problem, vision loss, severe imbalance, confusion, seizure, loss of consciousness, or another abrupt neurologic change. Note when the person was last known to be at the usual baseline. Do not wait for symptoms to improve and do not drive the person yourself when stroke is possible.[2]

For nonemergency concerns, use the contact plan provided at discharge. When unsure whether a change is urgent, seek professional guidance rather than relying on a general article.