What You Need to Know as a Caregiver for Someone Who Had a Stroke

Assistance can include professionals such as a neurologist, physical therapist, speech therapist and occupational therapist, as well as family, friends, caregiver support groups and resources including a state brain injury association or the American Stroke Association’s caregiver website and fact sheet.

To help caregivers on their journey, AARP reached out to medical professionals and the loved ones of stroke survivors to get insights and advice. Here’s what they say: 

Get expert advice on how to assist

When possible, join your loved one at doctor and therapy visits. Take notes on how the stroke affected them and how you can help with the recovery, says Tamilyn Bakas, a national volunteer expert with the American Stroke Association and a nursing school professor. Hedges Eichenbaum recommends writing down questions in advance. She also says to ask for a neuropsychological evaluation if one wasn’t performed. The testing can determine how a person’s cognitive functions have changed after a stroke and provide personalized information that can help caregivers best assist a loved one. 

Establish a consistent schedule

To help with memory, Bakas recommends creating a daily routine and adhering to it. “Provide meals at the same time each day,” she says. “Schedule routine personal care, exercises, therapy sessions and social activities.” Incorporate tasks a loved one can do safely, such as drying dishes and folding laundry. Avoid too many activities going on at the same time. As you craft your routine, build in breaks for yourself, adds Hedges Eichenbaum.

Accept help from others

“When someone says, ‘How can I help you?’ you have to be very specific about what you need. You can’t just say, ‘I’ve got it under control,’ ” McKean says. Caregivers often need time to recharge, and that can happen if someone else spends time with the stroke survivor. Having a written daily schedule, clear care instructions and a list of critical medical contacts makes it easier for others to fill in. Welcoming outside help is vital for a caregiver to maintain mental and physical health, says Susan Ryerson, a physical therapist with extensive experience in stroke patient care. “Taking care of yourself while you’re taking care of your loved one is important. If you get hurt, then who’s going to care for them?” she says.

Prepare the home

It’s important to get individualized advice from an occupational and physical therapist about preparing your living environment, says Hedges Eichenbaum, as recommendations will differ depending on each patient’s needs. Getting specific advice will prevent unnecessary and expensive home modifications.

The ASA says to be mindful about passageway widths (such as space in hallways and between furniture) if a loved one uses a wheelchair or walkers. Remove throw rugs that may be a tripping hazard, and install grab bars in bathrooms to aid with balance, if needed. Put away clutter, Bakas says, and you may need to remove potentially dangerous items such as sharp knives and household chemicals. “Make your home as safe as possible,” she says.

Incorporate tools to enhance memory

Use memory aids such as sticky notes, charts, calendars or reminders of important happenings coming up, Bakas says. Engage in activities that stimulate the brain, such as solving crossword puzzles, playing video and board games, listening to music and taking walks. For the tech-savvy, there are apps that can be accessed via smartphone or tablet to assist with memory, cognition and even language skills. The American Heart Association recommends several, including Elevate, Peak and Stop, Breathe & Think.

Facilitate more effective communication

Although each case is different, if language skills were affected, it can be effective to minimize background noise, articulate clearly and use straightforward language, Bakas says. Posing concise yes/no questions and using gestures such as a thumbs-up and -down can also be helpful. “Always verify their understanding instead of assuming,” Bakas adds. If needed, “give the survivor a card they can show others when they are trying to communicate. The card can say something like, ‘It is very hard for me to speak, read or write because I have had a stroke. I can usually understand what you are saying if you speak clearly. Thank you for your help and patience.’ ”

Cultivate an ongoing partnership with a health care provider

Like routine dental visits, it’s beneficial to schedule regular sessions with a professional, such as an occupational therapist or a psychologist, Ryerson says. It doesn’t have to be a doctor. It just needs to be a knowledgeable professional with whom you have a good rapport. The aim is to ensure “you’re not starting at square one every time there’s a small issue,” Ryerson says. “If you catch the small issues before they get big, you’re ahead of the game.” Bakas suggests keeping a list of daily medications — including a medicine’s name, dosage and any possible side effects — and bring it to all appointments.

Consider a caregiver support group

Those in similar situations can provide not only ideas and resources for taking care of a loved one, but also insights on how to take better care of yourself. McKean is active in the Caring Connection at the nonprofit Stroke Comeback Center in Vienna, Virginia. “I’m not a big joiner. I’m not a big clubby person,” she says. “But this is important to me. It gives you a feeling of connectedness in a group that really understands what it’s like.”

Add more joy to both of your lives

Reimagine activities that you and a loved one enjoyed together, Ryerson says. For instance, if travel was a shared passion, you could take a car ride to a beach or through the woods, roll down the windows and take in the scenery. If dining out with others was part of your routine, you can order takeout, set a table up outside and invite two people over to have an alfresco meal with you.

People with mobility challenges may benefit from working with a recreational therapist who can help them enjoy hobbies in an adapted manner, says Hedges Eichenbaum. “With the help of a recreational therapist, people with mobility issues have even been able to go skydiving and skiing,” she says. In addition, there are virtual and in-person social events designed for people who have mobility challenges. Check out your state Brain Injury Association’s events page for information.

Maintain hope

“There’s no cookie-cutter approach to this. You’ve got to figure it out in terms of your situation,” McKean says. “You can learn how to deal with it. A positive attitude goes a really long way.”

That stance — along with McKean’s support, the help of therapy and Borthwick’s determination — led to substantial progress on his end. “Russell could barely sit upright and could not walk for the first year and a half after his stroke,” McKean says. “He now walks around the house without a cane, and walks with a cane outside the house. He has much more independence.”

If maintaining hope feels beyond your ability, enlist the assistance of a therapist or mental health professional to help light the way.