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Caring for Individuals with COPD

By John W. Walsh

 

A diagnosis of chronic obstructive pulmonary disease (COPD) is a life-altering event for both the individual and the family members or friends who ultimately sacrifice everything to help during a difficult life passage. Taking on the role as caregiver has its challenges, but it can also be the opportunity of a lifetime.

COPD encompasses emphysema, chronic bronchitis, irreversible asthma and severe bronchiectasis. The two main causes of COPD are cigarette smoking and Alpha-1 antitrypsin (AAT) deficiency. Air pollution and occupational dusts can also contribute to COPD, especially when the person exposed to these substances is a cigarette smoker.

In the beginning stages of COPD, individuals with COPD (COPDers) experience minimal shortness of breath that might be noticed only during exercise. As the disease progresses, shortness of breath becomes worse, and may require an oxygen device. While COPD is incurable, its symptoms can be treated, and the individual’s quality of life maintained. As the disease progresses, caregivers play a critical role in helping to prepare meals, perform chores, run errands, manage medications and coordinate doctor visits.

Karen Anzalone, team leader for the C.O.P.D. Information Line, 866-316-COPD (2673), served as her father’s primary caregiver for several years and now provides assistance, education and support to other caregivers.

“Caregivers assist on a number of levels, from making sure the COPDer has a pulmonologist that they trust to ensuring that the right treatment plan is in place, and monitoring changes in symptoms,” Anzalone says. “In many cases, the caregiver is responsible for managing the household. First and foremost, it’s important to learn everything you can about COPD and to record events, flare-ups, diet, exercise and compliance in a notebook. Keep in mind that, as the caregiver, you have limitations and it’s normal to feel anxiety. Just do the best that you can for them, without sacrificing your own health and well-being.”

Education

To learn about COPD, caregivers can go online to find resources related to treatment, proper nutrition, pulmonary rehabilitation, medication, exercise and so on. In addition, they can:

  • Sign up for a COPD newsletter to keep pace with new developments and treatments
  • Join a support group either in the community or online
  • Learn about medication – and the proper way to take it
  • Know the equipment – oxygen therapy systems, including container, storage and delivery systems
  • Be well-prepared for emergencies
  • Become familiar with the types of exercise that benefit the individual with COPD – and stress its importance for mobility and extending quality of life
  • Become fluent in the terminology

“It’s important to have a level of knowledge that enables you to ask the physician effective questions on behalf of the COPDer, who may forget or be hesitant,” Anzalone says.

Communication

From the perspective of both the individual with COPD and caregiver, the biggest challenge can be communication. The individual with COPD must help the caregiver understand what they are experiencing, both emotionally and physically, while the caregiver must empower the individual and learn how and when to provide the right level of assistance. 

“Pushing the COPDer when they are not ready can lead to frustration and strain on the relationship,” Anzalone says. “Often, the COPDer worries that they will burn the caregiver out, while the caregiver worries that they are not doing enough. Caregivers should keep in mind that the COPDer may prefer to be given the space to feel better rather than being made to feel better. Ultimately, it is up to the COPDer to make sure the caregiver understands what they are going through so that they are better able to provide the best care.”

In general, individuals with COPD must feel free to discuss the disease. Open, clear communication is the best way for caregivers to negotiate that fine line between doing everything for the individual with COPD and empowering them to perform tasks on their own.  

Infection

People with COPD have trouble clearing their lungs of bacteria, dusts and other pollutants in the air, which puts them at risk for lung infections that can further damage the lungs. As caregivers, it’s critical to watch for signs of infection and take measures to help prevent them, such as:

  • Asking visitors with cold or flu symptoms to come back when they are feeling well
  • Keeping the environment clean and free from smoke of any kind, excess dust, pollen and air pollution
  • Washing your hands frequently, especially when handling food, equipment or medication

Warning signs of infection include: increased shortness of breath, wheezing, coughing up increased amounts of mucus, yellow- or green-colored mucus, fever over 101°F, chills, increased fatigue or weakness, sore throat, congestion and headaches.

Depression

Depression is common in individuals with COPD. In fact, about 40 percent are affected by severe depressive symptoms or clinical depression, according to studies. Monitoring the individual’s emotional state is an important part of the job. By the same token, caregivers should be aware of their own emotional states. At some point, those with COPD begin to lose the ability to be part of everyday activities, such as playing games with the grandchildren, eating a large meal or even going for a walk. Depression in the caregiver can be as much a part of life as it can be for the individual with COPD.

Travel

Caregivers and individuals with COPD must always have a well thought-out plan before traveling, even for a drive across town, because of the demands of supplemental oxygen. For airplane flights, make sure you:

  • Have a copy of the oxygen prescription, as well as the name and phone number of the doctor, respiratory therapist and oxygen supplier
  • Have enough medication for the journey
  • Know how to operate the portable oxygen system and how long the oxygen will last
  • Have oxygen refills available
  • Know where the nearest hospitals are located  

Using oxygen doesn't mean that individuals with COPD can't travel, but it does mean you should have a back-up plan for potential delays or detours, or in case of malfunction in the oxygen system.

Taking Care of the Caregiver

“The overwhelming emotion that many caregivers feel in their role is guilt,” said Anzalone. “You always feel like you’re not doing enough, but it’s important to create balance between caring for the COPDer and caring for yourself.”

Toward that end, caregivers should:

  • Take breaks
  • Get assistance from others as much as possible
  • Exercise and eat a balanced diet
  • Connect with other caregivers who have experience with COPD – and understand its special challenges

For caregivers, putting themselves first isn’t always easy. To understand why optimizing your own well-being is so critical for helping others, consider the analogy of an oxygen mask on an airplane: You have to put your own mask on first before you can begin to help others.
 

 

John W. Walsh, who was diagnosed with Alpha-1-related genetic COPD in 1989, is the Co-Founder and President of the COPD Foundation, a not-for-profit organization dedicated to developing and supporting programs which improve the quality of life through research, education, early diagnosis and enhanced therapy for persons whose lives are impacted by Chronic Obstructive Pulmonary Disease (COPD). He is also the Co-Founder of the Alpha-1 Foundation (a research organization) and AlphaNet, Inc. (a unique, not-for-profit disease management services company run by and for patients). He can be reached at jwwalsh@copdfoundation.org.

 

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