12 Tips for Stroke Survivor Caregivers

May 20, 2021

When a loved one suffers a stroke, the role of caregiver often becomes a full-time role, most aren’t prepared for.

In support of National Stroke Awareness Month, Kathryn Donley, BSN, RN, CCRN-K, CNRN, Stroke Program Director, and Cheryl Griffith, MSN, RN, Stroke Program Coordinator at Jefferson Health – New Jersey offered advice they’ve learned over the years on how you can care for stroke survivors, while not sacrificing your own well-being.

      1. Take care of yourself.

First and foremost, if you’re not healthy and focused, you may not be able to help someone recover, says Donley. “Know your stressors and how to cope. Find a few minutes to decompress, even if it’s just in the shower. Some like to meditate or listen to music. Whatever it is, it’s essential to carve out time for yourself. Having back-up support can make this easier to do.”

Sometimes caregivers are so busy, they neglect their own needs, adds Griffith. “Remember to eat a healthy, well-balanced diet and fit in some exercise. Also, stay on track with your own medications. If you don’t do this, your health can suffer.”

      2. Identify back-up support.

It’s incredibly important for another friend/family member to be apprised of the survivor’s care plan. Not only can a secondary caregiver allow you to take breaks when needed, but they’re there to step in in the case of an emergency, adds Donley.

“Some caregivers have delayed serious medical care for themselves, because they feel they can’t leave their loved one,” said Griffith. “Don’t get stuck in that position. Be proactive and have a back-up plan.”

      3. Know about insurance coverage and advocate for assistance.

A huge worry is the “what if” of being able to afford care, notes Griffith. Navigating the “ins and outs” of insurance coverage, as well as charity care options, can be confusing. Speak up and ask for help. Your loved one’s care team can assign a case manager/social worker to help you find the most affordable options.

There’s a lot of financial assistance available for stroke survivors in New Jersey, adds Donley. This can be designated to multiple services, including transportation, daycare, rehab, and durable equipment.

      4. Assess your own financial state.

It’s also important to know how your own finances will be impacted, continues Donley. Learn how your job and the state can work with you. Look into FMLA (Family and Medical Leave Act) and find out if you’re eligible. If you can’t afford to take off work full time, try to create a “tag-team” plan that involves multiple caregivers taking turns.

      5. Join support groups.

We’ve learned that support groups are paramount to easing the stressors involved in both the caregiver’s and survivor’s journey, says Griffith. “It’s natural to feel like you’re alone, but the truth is, you’re not. Joining a support group – in-person or virtual – connects you with a community of people who can provide insight, recommendations, and comfort.”

At Jefferson Health, virtual stroke support groups meet once a month. Learn more here.

      6. Know their medications (and their side effects).

Stroke patients are often discharged with several new medications. Talk to their doctor to learn what each medication is for, so you can help your loved one understand their purpose (not just their shape or color), says Griffith. “It’s also important to pay attention to any possible side effects and notify their doctor as soon as possible if any are suspected.”

      7. Participate in their rehab.

Whether receiving inpatient rehab, outpatient physical therapy, or physical therapy at home, you should continue to work with them on their recommended exercises once that service has ended (or on off days), suggests Donley.

      8. Know the signs of a stroke.

Studies show those who’ve had a stroke are at a higher risk for future strokes. People often present with symptoms similar to what they experienced the first time, explains Donley, but they can present with different symptoms that you/they are not used to.

Remember the acronym “BE FAST.”

Balance. Watch for sudden loss of balance.

Eyes. Check for vision loss.

Face. Check for an uneven smile.

Arm. Check if one arm is weak.

Speech. Listen for slurred speech.

Time. Call 911 right away.

      9. Consider safety at home.

Many stroke survivors are at risk for falls; home modifications – such as installed handrails along stairways; grab bars in bathrooms; removal of rugs; and rearranged furniture – can help reduce this risk and allow them to stay in their home, says Donley.

      10. Monitor emotional and behavioral changes.

Some of the most common side effects of stroke are depression and mood swings, explains Griffith. “Most stroke programs will screen for these prior to discharge. However, these can pop up several weeks after going home.”

Some signs and symptoms to watch for are being quiet/distant; loss of interest in activities once enjoyed; and loss of self-esteem. Don’t brush these off as “just a bad day,” continued Griffith. If left untreated, the impacts on both the survivor and caregiver can be significant.

      11. Promote independence.

Sometimes caregivers get so used to doing everything for their loved one that they can’t regain independence, says Donley. Let them do things themselves. Even the smallest things, such as washing one’s face, can improve feelings of self-sufficiency and confidence.

      12. Remember, stroke recovery takes time.

You will see small, incremental improvements; it’s not going to happen all at once, explains Donley. Speech difficulties can take longer to improve, and sometimes, with extreme loss of strength, not all of it will return. But, with assistance and the right mindset, they can still live life to the fullest.

For more information on stroke and Neuroscience services offered at Jefferson Health - New Jersey, click HERE