What Caregivers Should Know After a Loved One’s 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 said. 

Get expert advice on how to assist

When possible, join your loved one at doctor and therapy visits, says Tamilyn Bakas, a nursing professor at the University of Cincinnati and a volunteer expert with the Council on Cardiovascular and Stroke Nursing, which is within the American Heart Association. 

Bakas suggests keeping a list of daily medications — including a medicine’s name, dosage and any possible side effects — and bringing it to all appointments. A notebook can be helpful to write down important points about your loved one’s recovery and how you can help. 

Establish a consistent schedule

To assist with memory, Bakas says many caregivers find that creating a daily routine, such as providing meals and assisting with personal care at the same time each day, helps. 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, says 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 American Stroke Association advises being mindful of passageway widths (such as the space in hallways and between furniture) if a loved one uses a wheelchair or a walker. 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. “Try to 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 upcoming important events, 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

If your loved one has communication issues, try to speak slowly and clearly with short sentences, Bakas says. Sometimes, yes/no questions with thumbs-up and thumbs-down can be helpful.

Try to avoid noisy settings when discussing something important, Bakas adds. A quiet room or turning down the TV can help. When out and about, some find it helpful to carry a card that says, “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

As with 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.”

Consider a caregiver support group

Those in similar situations can provide not only ideas and resources for caring for a loved one but also insights into how to take better care of themselves. McKean serves as a moderator for the Caring Connection at the nonprofit Stroke Comeback Center in Vienna, Virginia.

“It’s work that I love. It means a great deal to be a sounding board for people in great need and to bear witness to their struggles,” she says. “My secret sauce is being positive and hearing the positive parts of what caregivers share.” 

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 up a table outside and invite two people over for an alfresco meal.

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.”

For Borthwick, that stance — along with McKean’s support, therapy’s help and his determination — led to substantial progress. “Russell could barely sit upright and could not walk for the first year and a half after his stroke,” McKean says. During their summer in the Poconos this year, McKean enlisted a physical therapist assistant who was also a certified massage therapist to help Russell with physical therapy and range-of-motion exercises. He thrived.

“We may be getting older, but Russell is determined to make exercise integral to his life. At home, he now uses the treadmill twice a day and works out with an athletic trainer four times a week,” McKean says. 

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