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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