By: Brie Darcy, PT, DPT

When a loved one experiences a stroke, family, friends, and other loved ones may unexpectedly find themselves in a new role: caregiver. Unlike chronic or other progressive illnesses, a stroke often provides little or no warning. Additionally, with a 44% increase in the number of young Americans hospitalized due to stroke over the last decade, a stroke can occur at a much younger age than may be on your medical radar.1 As a result of these circumstances, the majority of stroke survivors and new caregivers feel unprepared or overwhelmed when this rapid (and often life-altering) change occurs.

While the responsibility of caregiving can be a large one, the right resources, knowledge, and support can make this unexpected situation manageable (and even rewarding). We’ve put together some of our best tips and advice for new caregivers.

5 Tips For New Caregivers

1. Do Your Research.

Knowledge is power. Unless you work in the medical field or have personal experience with stroke, the diagnosis may seem foreign and scary. Take advantage of every opportunity to learn about your loved one’s condition and expected prognosis. Talk to doctors, nurses, and therapists. Ask questions. Join stroke support groups where you can meet individuals in similar situations and share advice, resources, and tips. If you are unable to attend support groups in person, many groups are available online through sites such as Facebook. Additionally, organizations such as The National Stroke Association and the American Stroke Association provide a wealth of information on their websites including medical information, caregiver guides, and links to support groups and other resources. There are also a number of books written by stroke survivors and their caregivers that may provide unique and helpful perspectives.

2. Rehabilitation Is Key.

Rehabilitation professionals (including physical therapists, occupational therapists, and speech therapists) provide a wealth of knowledge on stroke recovery. If your loved one has continued impairments resulting from their stoke (such as weakness, mobility impairments, balance issues, falls, decreased independence, or speech impairments), rehabilitation professionals can help. Depending of the extent of the impairments, therapy can be provided in the inpatient, outpatient, or even home settings. Your insurance representative can inform you of your coverage and any expected costs for these services.

3. Maximize Your Resources.

While the majority of caregiving services are hired and paid privately, certain insurance providers (including Medicaid, Veterans programs, and Medicare Advantage) may offer provisions for additional caregiving services in certain circumstances. Additionally, many states have unique programs that provide support, such as financial compensation to family caregivers, paid work leave, transportation, meal delivery, or minor home revisions. These programs are targeted at helping individuals remain in their homes as they age or after illness. The website www.eldercare.gov can help you locate resources in your community. Please note that eligibility requirements (such as age or income) may apply and differ across states.

4. Practice Prevention.

Having a stroke puts survivors at risk for a second stroke. Take steps to minimize that risk by encouraging a healthy lifestyle, taking medications as prescribed, and keeping doctor and therapy appointments. Remember the warning signs of stroke by memorizing the acronym F.A.S.T.

  • Face drooping. Smile and see if one side of the face droops. 
  • Arm weakness. Raise both arms. Does one arm drop down?
  • Speech difficulty. Say a short phrase and check for slurred or strange speech.
  • Time. If the person shows any of the symptoms above, call 911 right away and write down the time the symptoms started.

It is also important to be aware that the risk of depression is elevated in stroke survivors with reported rates of approximately 30%. Individuals with prior depression or a severe stroke are especially at risk.2 Post-stroke depression can be described as a feeling of hopelessness that interferes with function and quality of life. Additionally, it can interfere with stroke recovery. There are a variety of treatments available for post-stroke depression. Consult your physician as soon as possible if you feel your loved one might be experiencing depression.

5. Caregivers Need Care Too!

You’ve heard the flight attendant say it: “In case of emergency, please apply your oxygen mask first, before helping others.” This important motto of survival carries forward into the caregiving world. We can’t provide our best to others if we don’t take care of ourselves. Several tips that may help include:

  1. Ask For Help. Even in the best of circumstances, caregiving is a challenging role. If someone offers to help, let them! Don’t hesitate to define what you need and ask family, friends, or neighbors for assistance with errands, meals, yard work, cleaning, or other tasks that may alleviate some of your responsibilities.
  2. Don’t Neglect Your Own Health. It’s easy to forget our own medical needs when caring for others. Be sure to follow-up on your own healthcare needs including regular doctor visits and taking medications as prescribed. Staying strong and healthy benefits yourself and your loved one.
  3. Take A Break. Caregiving can be physically and emotionally challenging, and caregivers are subject to burnout and fatigue without regular breaks. It’s important to recharge your batteries! Consider looking into respite care opportunities. Respite care provides short term relief for primary caregivers (costs can vary by insurance and other funding sources). For more information, visit https://www.nia.nih.gov/health/what-respite-care.
  4. Practice Self Care. Remember, your own needs are important too! We suggest the following:
    • Find time for your own hobbies or other interests at least once a week. (Or more!)
    • Talk or spend time with a supportive friend.
    • Try to get adequate sleep. Rest or nap if needed. 
    • Say “no”  to non-essential tasks that provide additional stress, or delegate them to others.
    • Consider journaling. Journaling can provide an outlet for emotions and stress management.
    • Prioritize exercise. Exercise is important for physical and emotional health, and regular physical exercise can help relieve stress. Even a short walk can provide physical benefits and help clear the mind.
    • Give yourself credit, or a least a pat on the back. Caregiving is not easy and you are doing your best!!

References

1. National Stroke Association. Young Stroke Survivors. https://www.stroke.org/understand-stroke/impact-of-stroke/young-stroke-survivors/. Published 2019. Accessed 2019, June 20.

2. Jorgensen TS, Wium-Andersen IK, Wium-Andersen MK, et al. Incidence of Depression After Stroke, and Associated Risk Factors and Mortality Outcomes, in a Large Cohort of Danish Patients. JAMA Psychiatry. 2016;73(10):1032-1040.