Support during a stroke: A Swedish caregiver shares their story

November 23, 2022 Swedish Neuroscience Team

[3 MIN READ]

In this article:

  • Time is of the essence when someone is having a stroke. Learn the warning signs and when to act F.A.S.T.

  • Caregivers can help make sure their loved who is having a stroke gets timely care, and they can support their loved one’s providers, too.

  • The Swedish Stroke Support Group is open to both stroke patients and their caregivers and can help families make their way through the aftermath of a stroke.

When Katje Kaczamerk began her job as a senior business data analyst for the Neuroscience Stroke Program at Swedish Medical Center, she’d been drawn to the job because she wanted to give back to a program known for the great work it does with patients. 

Katje and her family had experienced the program’s high quality of care firsthand when her partner’s sister experienced a stroke years ago. As an experienced health care data analyst, she’d be helping the stroke program move to a cloud-based model for collecting and managing patient data.

What she didn’t expect was to find herself in the emergency department on a Saturday morning with a front-row view of her colleagues at work while they delivered lifesaving care to her partner, who was now experiencing a stroke himself.

Being a caregiver starts at the first signs of a stroke 

“When Dean came to me that morning telling me that his face was numb and tingly feeling like it was asleep, he was talking slowly, slurring his speech,” Katje says. “He didn’t have the telltale signs of a stroke, like a drooping face or weakness in his arms or legs, but I knew that if it was a stroke, we had limited time to get him to the hospital for tPA.”

Tissue plasminogen activator (tPA) is a drug that can help break up a blood clot so the patient’s blood flow can return to normal. It is given via an injection and is used for emergency treatment of ischemic strokes, which happen when a blood clot interrupts blood flow to a region of the brain.

The time sensitivity of effective stroke treatment is why the American Stroke Association established the F.A.S.T Warning Signs to help identify a stroke:

F—Face: Can the person smile? Does one side of their face droop?

A—Arms: Can the person raise both arms? Does one arm drift downward?

S—Speech: Can the person repeat a simple phrase? Is the speech slurred or strange?

T—Time: If you see any of these signs, call 9-1-1 right away.

Always make note of the time that the symptoms first appeared to help providers determine the best treatment option, and do not drive to the hospital. Call 9-1-1 so that medical personnel can begin life-saving treatment on the way to the emergency room.

Caregivers can help stroke patients get priority care

Katje and Dean arrived at Swedish Issaquah and she told the reception desk they were there to rule out a stroke — an important detail that can help prioritize a patient at the ER. She knew that for Dean to receive tPA, there is a specific process with many steps that must be followed in a short amount of time — within just four and a half hours after the onset of symptoms.

“As I found myself standing in the doorway watching the nurses check his pupils and get his vitals, I realized that for the first time, I was seeing the collection of all the data that goes into the NIH stroke scale, the data I work with every day,” Katje says.

“When they whisked Dean out to go to CT, I was alone for the first time, and I started to cry,” she says. “Even with all my training and knowledge about stroke care, I was scared. But I could not let that fear overcome me.”

“Then it hit me, this is what my team does, and they do it for people who don’t know what is going on. All the work we put into auditing charts and following up with caregivers, all the details that go into caring for a patient to make sure everything we do is safe. They didn’t just do that for Dean on that one day; it’s done for every patient who comes to Swedish every day. It was humbling.”

Caregivers can advocate for patients while also supporting providers

While Katje’s understanding of stroke treatment at Swedish reassured her that Dean was getting the best possible care, her employee status made it challenging for her not to interject in the care team’s work or jump into their conversations. But she knew that if she didn’t hold back, the neurologists would not be able to assess Dean’s condition accurately.

“I knew it was important to let the team do what they do best,” she says. 

Katje says it’s important for a stroke patient’s caregiver to be available to answer questions when needed, but you shouldn’t try to answer questions on behalf of the patient because their responses will help the neurologist’s assessment.

“Try to observe but not interfere, even if you think you know the answer. You want to be aware of what is happening, but respecting the providers’ interactions with the patient is also important. What you can do is support them as they are doing it.”

The Swedish Stroke Support Group is a resource for caregivers, too

Because Dean and Katje made it into the hospital within the required time frame for tPA, the treatment was successful and Dean only had to stay in the hospital for a 24-hour observation period.

“Because we got him there so early, he has recovered almost 99%,” Katje says. “He has the full motion of his left side but still has some issues with spatial awareness, loss of taste and a bit of numbness in his left hand.”

Katje adds that as a member of the stroke program, she’s fortunate to have access to the expertise of her colleagues on the stroke team every day.

“There are questions that you won’t think of while you’re still in the hospital,” she says. “When those questions or other concerns arise, the Swedish Stroke Support Group is there for patients and caregivers, providing education and community.”

And if the family member who had the stroke isn’t up for joining the Stroke Support Group, that does not mean the patient’s caregiver can’t participate. Sometimes caregivers need care, too. 

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Learn more and find a provider

If you have questions about stroke care and resources for patients and caregivers, contact the Stroke & TIA Clinic at the Swedish Neuroscience Institute. We can accommodate both in-person and virtual appointments.

With Swedish Virtual Care, you can connect face-to-face with a nurse practitioner who can review your family and health history. To find a provider, try searching our provider directory.

Join our Patient and Family Advisory Council.

Related resources

Swedish Stroke Support Group Information

It’s National Stroke Awareness Month: What women should know

Swedish among the U.S. News & World Report Best Hospitals for 2022-23

Recovering from a health crisis, one step at a time

 

This information is not intended as a substitute for professional medical care. Always follow your health care professional’s instructions.

 

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About the Author

From deep brain stimulation to focused ultrasound to pediatric neurology, The Swedish Neuroscience Team is recognized as national experts to help people address a wide array of neurological conditions. Our goal is to provide useful and helpful advice and tips on non-surgical and surgical options to treat any disease of the mind.

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