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How to Cope While Caregiving for a Stroke Patient

Occupational and physical therapy experts provide tips for balancing self-care with helping loved ones on their road to recovery.

According to the CDC, someone has a stroke every 40 seconds in the United States. Although the risk of stroke increases with age, strokes can affect anyone and cause long-term and serious disability. It’s a life-changing diagnosis for the patient and their loved ones, who often, just as suddenly, become full-time caregivers.

“One of the most challenging aspects of a stroke diagnosis is the sudden onset of it,” explains Elizabeth Hearn, a board-certified clinical specialist in neurologic physical therapy and advanced clinician at Jefferson’s Hospital for Neuroscience. “One day you’re absolutely fine, and the next day you’re completely debilitated. It’s incredibly overwhelming for the patient.”

Furthermore, the symptoms can be wide ranging, and affect various aspects of daily independent living.

“Some patients can experience aphasia or speech deficits, and that can make it really hard to communicate their needs,” adds David Santacroce, an occupational therapist at Jefferson’s Hospital for Neuroscience. “This greatly impacts the patient, but it’s also incredibly challenging for the person looking after them.”

If symptoms don’t warrant in-patient rehabilitation, stroke patients can make the transition from hospital to home quite soon after their diagnosis. Caregivers therefore often find themselves having to adapt and take in a lot of information about medications, home safety and rehabilitation in a very short span of time.

“For the caregiver, this is a critical period where they may not have the support they need to care for their loved one who is returning home with a reduced functional status,” says Namrata Grampurohit, PhD, assistant professor of occupational therapy, in Jefferson’s College of Rehabilitation Sciences. Dr. Grampurohit is conducting research that focuses on how to better support patients and caregivers in the rehabilitation process. “Taking on a caregiver role can trigger depression, stress, anxiety, poor health and reduced quality of life.”

Our experts in occupational therapy share tips that caregivers can use to cope as they help their loved one rebuild and recover after stroke.

Find Connection and Peer Support

Depending on their loved one’s impairments, caregivers may have to provide hands-on assistance 24 hours a day, or check in periodically. No matter the circumstances, it is a change for the caregiver and their daily routine, a loss of independence, normalcy and adjusting to the new normal of their loved ones.

Santacroce and Hearn both stress that it is crucial for caregivers to connect with others who are going through the same or similar experience. Support groups can be an important source of solace and a space for commiseration, as well as a way to share resources and tips on how to best support your loved one, while also taking care of yourself.

Stroke can be a very stressful event for the patient, and survivors can often experience difficult emotional changes like depression and anxiety. Hearn recommends caregivers encourage the patient to also participate in support groups and meet others who have lived through and are recovering from stroke.

While the pandemic has hindered in-person physical support groups, there are various virtual support groups available at Jefferson. The Jefferson Stroke support group meets monthly (to register, email: Stroke@Jefferson.edu). During the patient’s hospital stay, Santacroce runs a virtual stroke education group for patients and their caregivers, and as part of his doctoral research, alongside Dr. Grampurohit, he is collecting data and evidence to improve this education program. Separately, Dr. Grampurohit is conducting a study to explore whether coaching can benefit stroke caregivers.

“Coaching facilitates caregivers in identifying and solving barriers to rehabilitation and recovery goals,” explains Dr. Grampurohit. “It involves constructive and reflective conversations that empower caregivers to come up with ways to make meaningful changes to how they care for their loved ones, which benefit both the caregiver and the patient.”

Dr. Grampurohit and her team are currently recruiting study participants for this trial (Clinicaltrials.gov #NCT04535284).

Work with Your Loved One’s Therapist to Ensure Safety

Creating a safe environment for your loved can be daunting and overwhelming. Hearn suggests starting with small things first that are easier to control, like getting rid of cluttered spaces, making sure fall or trip hazards like rugs are out of the way, ensuring adequate lighting etc. You can work with your loved one’s occupational therapist to navigate any home equipment, at-home rehabilitation, and bigger tasks that might require more time to accomplish.

As part of outpatient and inpatient rehabilitation, family training is often provided so that caregivers can observe a treatment session with a physical and/or occupational therapist, and get tips on how to physically assist their family member.

“We always tell caregivers, if it doesn’t feel safe, don’t do it,” says Santacroce. “We also encourage our patients and their caregivers to always come back in for more training if they’re finding themselves in a situation that seems unsafe. Lean on resources available to you through rehabilitation services.”

Find Time for Respite and Rest

Caregiving is mentally draining so it’s important to avoid getting burnt out. Find little moments for yourself, whether it’s taking a walk or doing a short meditation. Depending on the severity of symptoms, your loved one may require assistance during the night to go to the bathroom or to get a drink of water – while this can cause disruptions to sleep, try to maintain good sleep hygiene and if it possible, try to catch up on your sleep with a nap during the day.

“Caregivers can often feel like they have to take it all on by themselves, and sometimes there can be guilt around taking a break or needing space,” adds Hearn. “But you can’t take care of your loved one if you’re not taking care of yourself. Rest is rejuvenating.”

Maintain Overall Health

Caregiving is mentally challenging and oftentimes involves a lot of physical labor. It’s important to get enough and proper nutrition, be active and maintain overall physical health so you do not injure yourself while helping your loved one.

“As part of family training, we go over body mechanics and techniques on how to properly transfer someone from a seated position or provide support to someone who can’t walk safely in order to reduce the risk of falls or injury,” says Santacroce.

There can be a lot of disruptions to a caregiver’s daily routine, and it may take some time to find a new rhythm. Be patient with yourself as you establish a new routine and balance caregiving with work and self-care habits.

Manage Expectations

Stroke recovery has ups and downs, and it is natural for the patient to feel frustrated when they’re not making as much progress as they want. For the caregiver, changes in their loved one’s progress or sudden declines can be alarming and cause more uncertainty.

“Most patients experience the fastest recovery within the first few months after their stroke,” says Santacroce. “While we do observe a plateau after that, it’s important to remember that there is still room for healing, and progress can still be made even years after a stroke.”

“It’s important for caregivers to manage their expectations around how much functionality a loved one will get back after a stroke,” says Hearn. “Understand that everyone’s brains heal differently, and always reach out to your loved one’s provider and therapist if you ever have questions.”

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