Stroke Recovery: Helping Your Loved One Through the Process

If your loved one recently had a stroke, know this: The stroke recovery process can be lengthy, but the most rapid recovery usually occurs within the first three to four months, according to the American Stroke Association. “This is the time when the brain is most ‘plastic’ and producing the most new brain neurons,” explains Mehrdad Ayati, MD, an Adjunct Clinical Assistant Professor of Medicine at Stanford University and a geriatrician who runs a geriatric concierge medical practice in Los Altos, California.

A person can continue to make gains long after that, however, provided the proper stroke recovery program and support team are in place. “The reality is that there are months of intensive therapy ahead for someone to reach their full potential,” Dr. Ayati says. In fact, rehabilitation therapy can be beneficial even after a year, according to a 2019 study published in the Journal of Neurophysiology.

To help you make your loved one’s recovery as successful as possible, there are many important things you, as a family caregiver, can do. The guide below walks you through the process.

In the Hospital

There are two types of strokes: ischemic and hemorrhagic. Ischemic strokes, in which blood flow to the brain is blocked, account for about 87 percent of all strokes in the U.S. The remaining 13 percent are hemorrhagic strokes, which happen when an artery in the brain leaks blood or ruptures.

The damage from an ischemic stroke is usually brain cell death caused by a lack of oxygen, explains Beth Popolizio, PT, DPT, a Neurological Rehabilitation Clinician who works as a Training Manager at TheKey. For a hemorrhagic stroke, the leaked blood disrupts the electrical impulses in the brain that help us think and function.The type and severity of impairments from a hemorrhagic stroke may vary depending on multiple factors, including the location and extent of the related brain injury, says Dr. Popolizio. In all cases, though, rehabilitation is proven to be beneficial to long-term recovery.

During your loved one’s hospital stay, the stroke care team (more on this later) will evaluate the effects of their stroke to help create the most effective recovery rehabilitation plan for them. Some of the impairments they will look for include:

• Memory problems: This includes trouble with short-term memory and following directions, confusion, and getting lost in otherwise familiar places, according to the American Stroke Association.
• Difficulty speaking: Your loved one may have trouble speaking or understanding speech, a condition known as aphasia.
• Muscle weakness or paralysis: Your loved one may have trouble walking, grasping objects, or maintaining their balance. They may find it hard to regain motor control or carry out planned movements like feeding themselves.
• Trouble swallowing: This condition, known as dysphagia, can be dangerous, since it can cause food to introduce bacteria into the lungs, possibly leading to pneumonia.
• Depression: People who have had a stroke often experience depression, which can be caused by biochemical changes in the brain and/or the normal psychological response to their condition.
• Incontinence: After a stroke, the muscles that control urine flow can weaken, and your loved one may experience unconscious leakage.

Impairments can vary depending on the severity of your loved one’s stroke and the area of the brain affected. For example, “generally speaking, an event that occurs on the left side of the brain has an effect on the right side of the body, and vice versa,” Dr. Popolizio explains. So someone who has a stroke on the left side of the brain may have difficulty moving their right arm and leg.

At this point, your loved one’s stroke care team will include some or all of the following specialists:

• Vascular neurologist: This expert specializes in managing cerebrovascular disease and conditions that affect blood vessels in the brain, like a stroke.
• Physiatrist: This is typically the point physician for your loved one’s rehabilitation program and is the person who helps coordinate their rehabilitation therapy.
• Cardiologist: This doctor works carefully with the person to determine if they have any heart problems that may have caused their stroke.
• Psychiatrist: If your loved one is experiencing depression, a psychiatrist can prescribe helpful medications and refer them to a therapist.
• Physical therapist: Physical therapists who specialize in neuromuscular techniques help people regain gross motor function, such as walking. They can also recommend durable medical equipment, such as braces and canes, to help your loved one return to meaningful activities.
• Occupational therapist: If the person is struggling with activities of daily living (ADLs), such as brushing their teeth or getting dressed, occupational therapists, who are experts in ADLs, can help them relearn these activities or show them potential adaptations, including new movement strategies. Occupational therapists can also recommend adaptive equipment to maximize your loved one’s safe, independent function.
• Speech-language pathologist: If your loved one has trouble swallowing, a speech-language pathologist can work with them to help, which may involve tongue strengthening exercises and sucking through a straw. They also play a role in therapeutic strategies to support attention and memory function.
• Nurses: They help assess and care for your loved one throughout their hospital stay.
• Social workers: They help the person who had the stroke and their family transition out of the hospital (more on that below). Social workers may also coordinate resources, such as providing information on local support groups that may be helpful.

Leaving the Hospital: What Happens Next

The average length of a hospital stay for a person who has had a stroke is about five days. After that, your loved one will be discharged to one of the following places, depending on the inpatient type of care they may need:

• An inpatient/acute rehabilitation unit: These are facilities driven by therapeutic goals intended to maximize functional outcomes. Patients are admitted based on multiple factors, such as diagnosis, home support, and their ability to tolerate the required three hours a day of physical, occupational, and speech therapy.
• Skilled nursing facility: If your loved one does not require care in an inpatient/acute rehabilitation unit but still requires skilled service, such as nursing or physical or occupational therapy, a skilled nursing facility (SNF) can offer the right amount of assistance and treatment to bridge the gap from hospital to home.
• Assisted-living facility: A person recovering from a stroke who no longer requires hospital care but can’t live at home without support might go to an assisted-living facility. There, they can receive varying levels of care based on their needs.
• Home and outpatient rehabilitation: If your loved one is able to live at home, they can receive the physical, occupational, or speech therapy they need on an outpatient basis, or possibly even at home, but it depends on the provider and plan. (For example, patients with Medicare must meet Medicare’s homebound requirements to be eligible for home-based services.) Call the number on the back of your insurance card to confirm the extent of your coverage.

The patient and their family, with the support of the care team, make the decision about where someone will go when they are discharged. Whether they can go home instead of to a facility partly depends on their environment. “If a patient is only able to sleep upstairs and can’t afford to install a chair lift, for instance, they are probably better off at an inpatient rehabilitation unit or a skilled nursing facility,” Dr. Popolizio says. “The same goes for someone who requires daily therapy because they may not be able to get their needs met at home.”

If your loved one has a family caregiver to help them or if the family has enlisted the services of a professional caregiver from a home care agency, it may be possible for them to go home and get the care and assistance they need.

Essential Questions to Ask Before Your Loved One Leaves the Hospital

If your loved one is being discharged to their home, it’s important for you as the family caregiver to speak with hospital staff—this could be a doctor, nurse, or social worker—so you understand the discharge plan. Ask these questions:

• What safety precautions do we need to take to prepare the home?
• What tasks will my loved one need help with? Can someone show me how to do the tasks that require special skills?
• What medications will they need to take and for what? How often do they need to take their meds and how should they be administered?
• Will my loved one need to follow a special diet when they return home?
• What kind of equipment and supplies will my loved one need? How can I order them?
• If the hospital is ordering equipment, ask for delivery dates, vendor names, and contact information for your records.
• How do I determine what my loved one’s insurance will cover and how much will I have to pay? Is there a way to get help with the costs?
• Is there a local caregiver or stroke support group I can join?
• What are the names and contact information for all of my loved one’s physicians, nurses, social workers, and therapists?

In some cases, an occupational therapist may visit your loved one’s home and do a safety evaluation to make sure it is safe and accessible. If a therapist is not able to do such an evaluation, it’s important to do a safety check yourself. Updates that might be required include:

• Replace bathroom and bedroom door hinges to make the doorway slightly larger so that a walker or wheelchair can fit through.
• Move your loved one’s bedroom to the first floor.
• Replace rugs or carpeting with vinyl or laminate flooring to help avoid falls and to make it easier for your loved one to navigate with a walker or wheelchair.
• Install railings on both sides of stairways.
• Install single-lever faucets for sinks so that your loved one can easily control water temperature and pressure with one hand.
• Increase the toilet height—using a toilet seat lift or replacing the toilet entirely—and add toilet rails and grab bars if necessary.
• Modify the kitchen. If your loved one’s physicians think it’s likely that a disability—such as the loss of use of their arm—is permanent, you may need to make changes to the kitchen. Some manufactures now have ADA-compliant appliances, such as cooking ranges and refrigerators designed for one-hand operation. You can explore some options here.

Stroke Recovery at Home: Outpatient Therapy and Family Caregiving

Once your loved one returns home, it’s very important to perform outpatient therapy according to their rehabilitation plan. “Rehabilitation is key to bolstering a stroke patient’s independence in everything from their ability to move around to communicating with others,” Dr. Ayati says. Depending on your loved one’s needs, outpatient therapy can include:

• Rehabilitation nursing: Typically a nurse will come in several times a week to take your loved one’s vital signs and do a basic wellness check, Dr. Ayati says.
• Physical therapy
• Occupational therapy
• Speech therapy
• Nutritional care and counseling: It may be hard for your loved one to get all the nutrients they need if they have difficulty chewing or swallowing. A nutritionist can help by suggesting options like purees, yogurt, and liquid meal substitutes.
• Talk therapy to treat post-stroke depression

Beyond outpatient therapy, your loved one will need help from you or another relative at home after a stroke, Dr. Popolizio says. This might involve:

• Coordinating their healthcare
• Helping with ADLs, like eating, bathing, dressing, and going to the bathroom
• Making sure they take their medications
• Helping them practice their learned rehab skills
• Keeping an eye on them to make sure they stay safe
• Driving them wherever they need to go
• Helping manage their financial affairs
• Doing housework and preparing meals

There’s a reason why coordinating healthcare is at the top of the list. “One of the most important things a family caregiver can do is act as a bridge for communication between a loved one’s doctors and therapists,” Dr. Popolizio says. Here are three ways you can do this:

1. Collect email addresses for all of your loved one’s doctors and therapists so you can easily reach out.
2. Arrange to be at your loved one’s therapy sessions so you can help them perform the exercises.
3. Make sure all the medical professionals working with your loved one—including nurses and therapists—know one another and share their contact information. “This way, they can all collaborate when needed,” Dr. Popolizio explains.

It’s also important to consider what your loved one is going through emotionally. The first three months post-stroke, a patient may experience spontaneous recovery, in which they suddenly regain a skill they lost after a stroke. But they may also experience setbacks or plateaus in recovery. Offer encouragement during these times, and prepare to adjust their health and rehabilitation goals as needed.

The way you interact with your loved one may need to change. Be patient, positive, and respectful. When you work with them on daily tasks, for example, the following tips may help:

• Demonstrate: Show your loved one how to perform the task.
• Break down the task into small steps.
• Repeat it several times.

When you communicate with your loved one, remember to:

• Speak slowly.
• Enunciate your words.
• Make eye contact or physical contact.
• Don’t speak for them unless they ask you to.

Continuing Stroke Recovery for Patients and Caregivers

“Patients and families don’t always realize that there are long-term complications from stroke,” Dr. Ayati says. While some patients make a full recovery, others will have lasting physical, mental, and emotional needs that often require additional help. It’s important to continue with medical care and therapies as appropriate.

At this point, members of your loved one’s team may still include:

• Primary care provider
• Physiatrist
• Physical, occupational, and/or speech therapists
• Neurologist
• Rehabilitation psychologist, who can help your loved one deal with the emotional aftermath of a stroke

How often your loved one visits them depends on their symptoms and level of impairment.

Getting outside help is important for you, the family caregiver, too. According to a 2020 report by the Centers for Disease Control and Prevention, nearly 20 percent of all caregivers report they are either in poor or fair health. And more than 50 percent of caregivers experience depression, says a 2022 study published in the World Journal of Psychiatry.

As a caregiver, you can’t control whether your loved one will make a full recovery. But you can take charge of how you respond to the situation. Consider this expert advice:

• Have confidence in yourself. Being a caregiver is a tough job, but remind yourself that you can do it.
• Acknowledge all feelings you have, such as sorrow, anger, resentment, and fear.
• Focus on the present. It can be easy to let worries about your loved one’s future take over, but concentrate on one day at a time. If you find that hard to do, practice a mindfulness-based technique like deep breathing or meditation for a few minutes.
• Recognize your limitations. You’ll need assistance sometimes, and that’s okay. Ask for help—and some time off—when you need it.
• Listen to your body. When you’re hungry, eat. When you’re tired, sleep (and have another family member take over caregiving duties for a while). When you don’t feel well, see a doctor.
• Watch for symptoms of depression in yourself, such as feeling hopeless or sad, and seek help. You might benefit from talk therapy, medication, or both.
• Resist the urge to isolate. Talking to other caregivers going through the same experience can help. You can find them at the American Heart Association’s Support Network for caregivers.
• Maintain a sense of self outside of caregiving. Take some time every day to do something you enjoy—read a chapter of a book, go for a walk, or watch your favorite TV show. At least once a week, break out of your regular caregiving routine—meet a friend for coffee, go to church, or head to the gym.
• Consider respite care, which gives you much-needed time for yourself. Respite care is when a professional caregiver or another family member temporarily cares for your loved one while you do whatever you need to do to help replenish yourself physically and emotionally. You might visit friends, enjoy a solo hike, or even plan a short vacation.

Seeking outside help is one of the most important things you can do for yourself. “When you have a loved one who is recovering from a stroke, the dynamic of your relationship changes,” Dr. Popolizio says. “Getting support and professional assistance will go a long way to preserve your loving connection to them. It takes pressure off you, while providing autonomy for your loved one.”