When Your Loved One Has Had a Stroke | Caregiver Action Network

Stroke Caregiver GPS: When Your Loved One Has Had a Stroke



To the Emergency Room

  • Have a Caregiver “Go” bag ready.
    • Pack a “Go” Bag that has supplies for you and for your loved one, such as a blanket, water, power bar, phone charger, and a book.
  • Be prepared with the right paperwork.
  • Tips for talking to medical staff.
    • Introduce yourself as the family caregiver.
    • Answer questions and provide useful information about your loved one's health.
    • Don't be afraid to ask for updates.
    • Say "Thanks!"
  • Accurately report your loved one’s symptoms to medical staff.
    • Don’t self-diagnose when sharing information with the doctors and other healthcare professions. 
    • DO: "My Dad seems to get extremely out of breath after walking even a very short distance."
    • DON'T: "I think my Dad has pneumonia." 

In the Hospital

  • Educate yourself.
    • Do research and don’t be afraid to ask questions about your loved one’s condition.
    • Keep updated information related to your loved one’s test results, lab work, and procedures.
  • Talk to your loved one about their goals.
    • What goals does your loved one have for their health and care?
    • What kind of activities do they want to get back to?
    • These may be hard questions to ask and your loved one’s answers may not match what your goals are for them, but it is important to listen to their wishes and keep them in mind throughout their care.
  • Observe the therapy sessions.
    • Watch the in-patient therapy sessions the hospital does with your loved. Take notes on the exercises. Ask which of these should be done at home.
  • Have the case manager help you plan for discharge.
    • It’s never too early to start planning with the hospital’s social worker or case manager for your loved one’s discharge from the hospital.
    • Make sure your loved one understand the discharge plans you’re developing with the case manager and that the plans match your loved one’s goals.
    • Get recommendations regarding other providers you might need, such as therapists, home health aides, and organizations that perform home evaluations.
  • Talk about home health care.
    • To ensure Medicare coverage of any needed home health care, you must get a home health care prescription from the doctor before discharge from the hospital.

Going Home

  • Do a safety evaluation of the home.
    • Note any devices your loved one may need at home (such as a wheelchair) and have them ready.
    • Remove throw rugs, change light bulbs, and install grab bars. Tackle areas right away that may lead to falls or make getting around dangerous or difficult.
    • Develop a plan to make certain changes in the home (such as installing a ramp or special features in the bathroom) to make things more accessible.
  • Handle medical appointments.
    • Schedule follow up doctor appointments and talk to doctors about any symptoms or signs you observe.
  • Discuss any additional help your loved one needs at home.
    • Figure out whether you need additional help (such as home health aides).
    • Do your homework to see what kinds of outpatient care (such as physical, speech, and occupational therapy) is covered by your insurance.
  • Build your support network.
    • Bring in friends and family into the care circle for your loved one.
    • Seek out formation on support groups.
    • Make sure you have someone you can reach out to and talk through your feelings.


  • Decide on what rehab will be pursued.
    • Based on the type of recovery your loved one wishes to make and the goals they have, they may choose any of the following types of rehab/care plans:
      • Self-Managed Care: Any types of therapy to be managed at home, with assistance from other family or friends as needed.
      • Nominal Care: Minimal therapy sessions with the purpose of maintaining current levels of comfort and mobility.
      • Essential Care: Less frequent, but still regular, therapy sessions targeting specific issues where improvement is desired.
      • Comprehensive Care: Frequent physical, occupational, vocational, and speech therapy for patients desiring a full recovery.
  • Keep a journal of your loved one’s progress.
    • Make sure to describe your loved one’s successes as well as their challenges.
    • Describe any new symptoms that develop.
    • Share note with doctors and with family or friends helping with your loved one’s care.

Recovery and the "New Normal"

  • Take care of yourself.
    • Try to set aside 30 minutes per day for yourself.
    • Attend support group meetings.
  • Ask for help when you need it.
    • Reach out to family or friends.
    • Look into respite care.
  • Understand that your loved one has to deal with their own “new normal” as well.
    • Talk to family and friends about any changes in mood or behavior.
    • Discuss changes in mood or behavior with your loved one’s health care team, as they may be a result of your loved one’s new circumstances or could potentially be a symptom of a separate issue.
  • Watch for warning signs.
    • Be on the look for signs such as muscle spasms, severe headaches, fatigue, chest pain, difficulty breathing, and heart palpitations.
    • Uncontrollable laughing or crying may be signs of a treatable condition called PBA.
    • Better safe than sorry: report the symptoms to the doctor.