By Rayna Neises

A sudden stroke can upend a life in minutes, but the real story unfolds in the long, uneven days that follow. We sit down with Lana Wilhelm—retired nurse, author of Stroke and the Spouse and Stroke and the Caregiver—to explore the hard truths and hopeful practices that carry caregivers from shock to steady ground. Lana speaks candidly about how medical expertise couldn’t prepare her for the emotional terrain of caring for her husband, the isolation that arrives after the hospital crowds thin, and the invisible deficits that make stroke recovery so misunderstood.

By Lana Pine

When a loved one experiences a stroke, the medical focus understandably centers on the survivor. However, according to Lana Wilhelm, RN, founder of Stroke Caregiver Connection, caregivers often face their own emotional, physical and logistical challenges that receive far less attention.

Wilhelm’s advocacy work is deeply personal. After her husband experienced a stroke, she quickly realized that while resources for stroke recovery were widely available, guidance specifically designed for caregivers was extremely limited. Many educational materials devote only brief sections to caregiver support, leaving families to navigate complex responsibilities on their own. Wilhelm describes stroke as a life-altering event that divides families into “before” and “after,” forcing caregivers to adjust to a completely new normal.

Patients with longer disease trajectories can have more complex needs compared to others. The trend has family caregivers facing significant challenges, with hospices employing various strategies to address them.

Some of these patients have longer hospice lengths for stay and also need improved upstream support, according to Diana Franchitto, president and CEO of HopeHealth. The nonprofit health system provides hospice, palliative and dementia care in Massachusetts and Rhode Island. 

Family caregivers need access to education and resources well before a patient becomes eligible for hospice, Franchitto said. Having person-centered, disease-specific approaches can help with families’ greatest long-term needs such as health care system navigation and providing emotional, psychosocial and practical support, she stated.

By Smart Senior Daily Staff

For many adult children, Alzheimer’s doesn’t arrive as a single turning point. It arrives in layers.

First, there’s worry — small moments that don’t quite add up. Then vigilance. Then responsibility. Over time, caregiving quietly expands until it fills every available corner of life, emotionally and logistically.

What surprises most families isn’t just how much care is required. It’s how disorienting it feels to provide it.

Lana Wilhelm, a retired registered nurse and nationally recognized caregiver advocate, describes this stage as a prolonged form of grief. Learning that a parent is slowly declining, she explains, brings shock and sadness — but for adult children, it becomes a slow grieving process.

By Jim Parker

Former intensive care unit and home health nurse Lana Wilhelm has founded an organization to aid family caregivers of seriously ill loved ones, particularly those who have suffered a stroke.

After 40 years in nursing, Wilhelm’s life was transformed in 2021 when her husband Rick suffered a stroke. All of a sudden, she was a 24-hour caregiver in her home as well as a professional nurse. She was instantly struck by the differences in providing those modes of care and how impactful such illnesses are on the patient’s family.

In response to the lack of available resources for caregivers, Wilhelm established the Stroke Caregiver Connection to provide additional support. Initially focused on families affected by stroke, the organization has since branched out to include those who have experienced other types of adverse health events.

Hospice News sat down with Wilhelm to discuss her work and the challenges families face while providing care in the home.

Featured: Hospice News

By Jim Parker

A former intensive care and home health nurse, Lana Wilhelm, has leveraged her experience as both a nurse and a family caregiver to found an organization that supports family caregivers of seriously ill loved ones.

After 40 years in nursing, Wilhelm’s life was transformed in 2021 when her husband, Rick, suffered a stroke. All of a sudden, she was a 24-hour caregiver in her home as well as a professional nurse. She was instantly struck by the differences in providing those modes of care and how impactful such illnesses are on the patient’s family. 

In response to the lack of available resources for caregivers, Wilhelm established the Stroke Caregiver Connection to provide additional support. Initially focused on families affected by stroke, the organization has since branched out to include those who have experienced other types of adverse health events.

By Abrah Taggart

After Lana Wilhelm was suddenly thrown into the role of caretaker when her husband had a stroke, she was driven to educate other caretakers with similar experiences by writing a book called “Stroke and the Spouse.”

The book follows the Wilhelm’s’ journey, beginning with the initial emergency room trip to the stages of outpatient rehabilitation at home. Now, her contributions to caregivers have been nationally recognized, leading her to speak across the U.S. and to eventually have her work embedded into classrooms at the University of Missouri College of Health Sciences.

Featured: The Columbia Missourian

By Lana Wilhelm, as told to Lauryn Higgins

She was ready for retirement, travel, and time with the grandkids—until one sudden moment turned her husband from partner to patient, and her world upside down.

Featured: The Flow Space

Every 40 seconds someone in the U.S. has a stroke[1], one of the leading causes of serious, long-term disability. To spotlight the courage and dedication of those impacted by stroke, the American Stroke Association, a division of the American Heart Association, is honoring seven recipients across the country with its annual Stroke Hero Awards, including St. Louis area resident, Lana Wilhelm.