COPD: Understanding Emotional, Mental Effects on Families

Chronic Obstructive Pulmonary Disease (COPD) is a progressive lung disease that makes it difficult to breathe and worsens over time.

According to the Centers for Disease Control and Prevention (CDC), COPD is the third leading cause of death in the United States, affecting millions of people each year.

While much attention is given to the medical aspects of COPD, its emotional and social impact on families and communities is equally significant, often leaving lasting scars on those who care for loved ones with the disease.

What Is COPD?

COPD is an umbrella term for a group of lung diseases, including chronic bronchitis and emphysema, that block airflow and cause difficulty breathing. Smoking is the primary cause of COPD, though long-term exposure to other irritants like air pollution, dust, and chemical fumes can also contribute. 

Symptoms of COPD often develop slowly over many years and may include shortness of breath, a persistent cough, wheezing, and increased mucus production. As the disease progresses, patients may experience exacerbations, or flare-ups, where symptoms worsen rapidly and require emergency care.

COPD is not curable, but with proper treatment, it can be managed to help improve quality of life and slow disease progression. Common treatments include medications, oxygen therapy, pulmonary rehabilitation, and lifestyle changes such as quitting smoking.

The ripple effect: How COPD affects families

COPD doesn’t just affect the individual diagnosed with the disease, it affects the entire family. Family members and caregivers often find themselves managing the physical, emotional, and financial challenges that come with supporting a loved one with COPD. 

The physical toll of the disease, including regular hospitalizations and the need for oxygen support, can create an immense burden on family caregivers. Family members may have to adjust their daily routines as they provide breathing treatments, medication management, and mobility.

Nine years ago, Catarina Caruso, 21, lost her grandmother, Agnes Caruso, 66, to COPD. Her grandmother, who had been her closest confidante, spent the last years of her life battling the disease.

Catarina remembers those years as being filled with sadness and helplessness as she watched her grandmother struggle to breathe and gradually lose her independence.

"My grandmother was more than just family to me—she was my best friend," Catarina says. "We did everything together, from cooking in the kitchen to sitting out on the lanai, sipping tea together. Watching her suffer from COPD, knowing there was so little I could do, was one of the hardest things I’ve ever experienced."

Her grandmother’s struggle with COPD required frequent hospital visits and an increasing reliance on oxygen therapy. 

“Each hospital visit brought home the reality of my grandmother’s condition,” Catarina says. “I’d feel a constant mix of hope and despair, really appreciating the moments when my grandmother was strong enough to talk, laugh, or share memories while also knowing her condition was getting worse.” 

Catarina says the emotional weight of watching her grandmother struggle with COPD caused feelings of frustration, sadness, and even guilt. 

“I felt a sense of powerlessness because there was no way to have her illness healed. I felt like there was no escape for her from the disease, which was incredibly upsetting,” she says. 

For families like Catarina’s who have lost a loved one to COPD, the grief process can be prolonged and complicated. The slow progression of the disease means that families often experience a form of anticipatory grief, where they mourn the loss of their loved one even before they pass away.

This type of grief can make the final loss feel even more intense and leave emotional scars that take time to heal.

Raising awareness 

Raising awareness about COPD is essential in helping to prevent the disease, improve patient care, and reduce the emotional and financial burden on families.

Education plays a key role in prevention, according to the American Lung Association. Understanding the early warning signs and symptoms of COPD can help patients seek medical care earlier, potentially slowing the progression of the disease.

Support for families and caregivers is also crucial. Organizations like COPD National Action Plan help empower people with COPD, their families, and caregivers to recognize and reduce the burden of COPD. Encouraging open conversations about the emotional aspects of caregiving and grief can help families feel more supported and less isolated.

COPD is more than just a medical condition—it’s a disease that affects families, communities, and lives in profound ways. For Catarina Caruso, the loss of her grandmother to COPD is a reminder of the devastating impact this disease can have. 

By sharing her story, Catarina hopes to inspire others to better understand COPD, raise awareness about its effects, and advocate for better resources for those with it.

The Lee Health COPD Management Program

If you have COPD or have just been diagnosed with it, the Lee Health COPD Management Program provides education, support and self-management to maintain your lung health and quality of life.

Our Asthma/COPD Educators use the guidelines of the Global Initiative for Chronic Obstructive Lung Disease to help empower people with COPD, their caregivers, and family members.

Appointments are available one-on-one via TeleHealth, in person, or group settings. 

To learn more about COPD Management Education, call 239-343-0765. 

WATCH: Chronic Obstructive Pulmonary Disease Education Video Series. This health education video library helps people with COPD understand and manage their care. A board-certified pulmonologist and accredited experts provide informative and easy-to-understand programming on a variety of topics. 

• COPD medications
• Stress management
• Nutrition & COPD
• Smoking cessation
• Home equipment
• Infection prevention
• Aerobic exercise and breathing
• Breathing easy and exercise
• Flexibility training
• Strength and breathing

We invite you to access the entire library online anytime, anywhere.