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How to Be a Caregiver for Someone With COPD

Breathing problems can be scary, but you can help

spinner image a person breathes deeply
Illustration: Jin Xia

COPD — chronic obstructive pulmonary disease — “is a tough disease,” says Colleen Brennan-Martinez, 64, a retired nurse practitioner from New York City whose father, James Brennan, died from COPD in 2020 at age 84. It’s tough for those who have it and struggle to breathe, she says, and it’s tough for those who watch them struggle.

Seeing a loved one gasping for air can be “very frightening,” says Goldia Brown, a 60-year-old funding analyst from Fairburn, Georgia, whose mother, Goldia Cotten Brown, died of COPD in 1997 at age 52. As a volunteer for the COPD Foundation, an education and advocacy group, she often talks with families about those fears.

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But these veteran caregivers, along with medical professionals who treat COPD, say caregivers should know that COPD is more treatable than many people realize — and that they can help their loved ones live better, longer lives.

“There are so many things that can be done,” Brown says. “I would want them to know that there is hope.”

Here’s what experts say caregivers for people with COPD should know.

What is COPD?

COPD is an umbrella term for a group of diseases that block airflow in the lungs, making it hard to breathe. The major types are:

  • Emphysema. With emphysema, small air sacs (alveoli) inside the lungs are damaged. Because of the damage, the walls between sacs break down, creating larger sacs that don’t work as well. It gets harder to breathe air out.
  • Chronic bronchitis. This is when the bronchial tubes that carry air to and from the lungs are constantly inflamed, producing mucus. If you cough up mucus most days for at least three months over two years, you could have this form of COPD.

“You can have all these manifestations in an individual patient,” or just some of them, says Fernando Martinez, M.D., chief of pulmonary and critical care medicine at Weill Cornell Medicine in New York (and Brennan-Martinez’s husband). While people are commonly diagnosed with COPD in their 60s or 70s, symptoms often start earlier, he says. In addition to shortness of breath and coughing, symptoms can include wheezing, chest tightness and tiredness.

The primary test for COPD is called spirometry. In this test, you blow through a tube into a machine called spirometer. It measures how forcefully and completely you can get air out of your lungs. The same test can be used over the course of the disease to see how it’s progressing.

What causes COPD?

In the U.S., the major cause of COPD is smoking, though “up to probably 25 percent of COPD occurs in people who’ve never smoked,” says David Mannino, M.D., chief medical officer and cofounder of the COPD Foundation. Other causes include dust, fumes and chemicals in workplaces, as well as secondhand smoke. Some people have a genetic condition, called alpha-1 antitrypsin deficiency, that causes COPD. (It’s diagnosed with a blood test.)

The link with smoking is a source of shame and blame for some families, says Keith Siegel, a respiratory therapist in Union, Maine. “It’s really important for caregivers to understand that it doesn’t matter why they have this disease,” he says. “They have this disease, and they need help and they need support.”

That support, he adds, should include helping loved ones try to quit smoking — even if they’ve tried many times before.

How it’s treated and how caregivers can help

The primary treatments for COPD are medicines called bronchodilators that help open airways. Patients typically get two kinds, Martinez says: medicines to take every day on a regular schedule, called long-acting bronchodilators, and medicines to take as needed, when symptoms flare up, called short-acting bronchodilators. You might also hear these described as “controller” and “rescue” or “quick-relief” medications.

They usually come in inhalers or are delivered with misting devices called nebulizers. Learning to use them effectively can be a challenge for patients and caregivers, says Suzanne Lareau, a senior instructor in nursing at the University of Colorado, Anschutz. “Probably 80 percent of people do not take their inhalers properly,” so they don’t get the full benefit, she says.

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Caregivers who show up for medical appointments and hospitalizations can help by learning how and when to use each medication, says Martinez. Unfortunately, he says, insurers sometimes switch patients to inhalers they don’t know how to use. Online videos, he adds, are sometimes the best teachers. (The COPD Foundation has a series of them.)

In addition to medications, some people with advanced COPD get procedures to reduce lung volume and improve breathing, Martinez says. Some with low oxygen levels may require oxygen therapy where supplemental oxygen is given at home through nasal tubes or a mask. Good treatment and a healthy lifestyle can extend lives, Mannino says: “All of us that take care of patients have had patients that have lived and lived fairly well with COPD for 15, 20, 25 years.”

The role of rehab

If a loved one with COPD has never been told about pulmonary rehabilitation, they may be missing out on “the single best intervention” for improving their quality of life, Martinez says. Rehab programs combine medically supervised exercise with education on medication use, breathing techniques, infection prevention, diet and other aspects of living with COPD. Caregivers are often welcome to sit in on educational sessions, Siegel says.

Rehab helps many people break out of a “vicious cycle” in which fear of shortness of breath leads to inactivity, leading to more shortness of breath, Lareau says.

While Medicare and other insurers cover rehab for many patients, it’s greatly underused, experts say. One study published in the Annals of the American Thoracic Society found that fewer than 3 percent of eligible Medicare recipients got rehab in the year after a COPD hospitalization.

One reason: The programs aren’t available everywhere. About 20 percent of Americans live farther than a 30-minute drive from one, research shows.

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Elizabeth Berger, pictured with mom, Amy Berger, says that everyday tasks like making a bed are "exhausting" for someone with COPD.
Courtesy: Elizabeth Berger

Elizabeth Berger, 32, a COPD Foundation volunteer who now lives in Sacramento, California, says her mom, Amy Berger, had COPD for many years before the family ever heard of pulmonary rehab — and then learned the nearest program was an hour from her home in rural upstate New York. That was just too far, Berger says. Eventually, her mom found some online sessions that helped, she says. She died of COPD at age 60 in 2017.

Brennan-Martinez says her dad went to rehab several times, “kicking and screaming,” but always benefiting. She says that while families should encourage eligible loved ones to go, they should appreciate that it’s hard for many people to do “something that makes them shorter of breath so that they can be less short of breath in the future.”

spinner image james brennan at his granddaughter’s wedding
James Brennan at his granddaughter’s wedding in July 2016. It was “incentive for him to participate in pulmonary rehab program following a hospital stay,” Colleen Brennan-Martinez said.
Courtesy: Colleen Brennan Martinez

Preventing flare-ups

Part of having COPD is dealing with so-called exacerbations — flare-ups when symptoms get worse, sometimes leading to hospitalization. The most common causes are infections, like colds, flu and COVID-19, followed by poor air quality, like the kind caused by wildfire smoke or other pollutants, Martinez says.

Caregivers should do everything they can to help prevent infections, Siegel says: “Every time you get a severe infection, you’re just adding to the overall lung damage.” 

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He and other experts say you can help by:

  • Urging your loved one to get all the vaccines their doctors recommend.
  • Following good infection control at home by washing hands and keeping any nebulizers clean.
  • Encouraging masking in higher-risk situations (Mannino says he includes air travel on that list).
  • Keeping sick people away. That includes you, Brown says: “If people are feeling a little under the weather themselves, even if they’re a caregiver, they need to distance themselves if they can and have someone else come in to help.”

It’s also important for people with COPD to eat well, the experts say. Ideally, that means “a basic healthy diet,” like the Mediterranean diet, says Mannino. Avoiding big meals can help, he says, since a full stomach can make breathing more uncomfortable. For some people, breathing problems make chewing and swallowing hard, leading to poor nutrition, Lareau says. In those cases, soft, higher-calorie foods may be in order, she says.

To minimize a flare-up, caregivers should urge their loved ones to get medical advice “sooner rather than later,” Brown says, when they see things like worse breathing, more coughing, more mucus and greater fatigue. Another possible warning sign: low oxygen levels, which most people now test for at home with a simple pulse oximeter finger device, Lareau says.

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As a COPD Foundation volunteer, Goldia Brown, pictured with mother Goldia Cotten Brown, talks with families about their fears.
Courtesy: Goldia Brown

Finding balance

It’s tempting when you care for someone with COPD “to ease their load and do a lot for them,” whether that’s grabbing a glass of water, fetching their mail or doing all their cooking, Lareau says. It’s better, she says, to encourage them to do as much as possible for themselves. The less people with COPD do, the less they can do, she says. “They need to exercise like everybody else.”

So, she says, encourage them to walk to the mailbox, make their own sandwich, and come with you to the grocery store and push the cart, if they can.

Encourage walking for exercise, even when it’s hard, Martinez says. He tells patients to “stop if you have to, catch your breath and do it again.”

The other side of the coin, experienced caregivers say, is understanding when things are hard for someone with COPD.

Just making a bed might mean sitting down for a break after every sheet corner, Berger says. “I think for regular people, it’s kind of hard to imagine how exhausting that is.”

Brown says her mother reached a point where getting dressed for the day was too hard, though she never stopped cooking for family and friends. Brennan-Martinez says her dad, a successful businessman, kept going to work as long as he could, but eventually needed help with things like showering and shaving.  

When caregivers themselves get exhausted, Brown recommends reaching out to in-person or online support groups: “There are other people in your situation out there that you can talk to. You’re not alone.”

Keeping indoor air clean 

Air quality, indoors and out, matters for people with COPD. That’s why they are urged to stay inside when outdoor air quality is bad. (You can check yours at Air Now.) Caregivers who want to improve indoor air should look for air cleaning devices with HEPA filters, not ionizers, says respiratory therapist Keith Siegel. Ideally, he says, the home will have air conditioning for warmer months.

Other tips from the American Lung Association: 

  • Keep smoking out of the house and car. 
  • Avoid burning things — including candles, fireplaces and woodstoves. 
  • Use exhaust fans when cooking. 
  • On days with good air quality, open doors and windows for at least 15 minutes. 
  • Avoid using air fresheners, incense, sprays and toxic cleaning products.

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