How to take care of yourself
How to build your family-and-friends support system
How to help the person in your care
In Stage I COPD -- defined by having forced expiratory volume greater than 80 percent, as measured by a test called spirometry or FEV1-- symptoms are mild but can be debilitating in ways that the person you're caring for may not notice. At this stage most people may not even realize their lungs aren't functioning at full capacity, and they're grappling to understand what that means. Here's what to expect:
Physical activity decreases, yet the need to exercise actually increases. You may already be noticing the COPD "vicious cycle": Because exertion can bring on shortness of breath, COPD sufferers resist physical activity. But they need to increase their level of physical activity despite the discomfort. Over time, negotiating this balance will be one of the big challenges you'll face as a COPD caregiver.
Explain that engaging in physical activity is the best way to strengthen respiratory muscles, which helps prevent COPD from progressing and improves overall strength and endurance.
Help him or her find a class or group to participate in so exercise is regularly scheduled.
Set up a "buddy" program to help your loved one stay motivated, or plan exercise you can do together.
Purchase some free weights to keep at home so the person you're caring for can do simple exercises while watching TV or listening to music.
Expect episodes of shortness of breath. Your loved one may notice shortness of breath during exercise, or during any activity that boosts heart rate, such as hurrying for a bus or carrying a heavy object.
Don't panic. Suddenly not being able to draw a deep breath can be frightening, but unfortunately panicking just makes symptoms worse. Stay calm and try to encourage your loved one to slow breathing to a steady rhythm.
If you haven't already, get a referral to a pulmonologist or COPD specialist. There's a great deal of misinformation about COPD, and some doctors don't treat early COPD as aggressively as experts now recommend.
Make sure the person you're caring for has a good supply of inhalers, if one has been prescribed.
If the doctor hasn't yet prescribed inhalers, discuss this issue as soon as possible, since many experts now believe that inhalers are beneficial in the treatment of early COPD.
Make sure your loved one has been referred for pulmonary rehabilitation, a comprehensive program of breathing retraining and medical management. If not, get the referral.
Fatigue increases. When breathing isn't easy, every activity becomes more tiring. Your loved one may experience fatigue after exertion and, gradually, more and more with everyday activities.
Be the "exercise police" -- make sure your loved one is exercising regularly, even if he or she doesn't want to. Studies show that COPD patients who exercise regularly report less fatigue and better quality of life than those who don't.
Make good sleep a priority. If sleep is a problem, discuss the issue with his or her doctor. There are techniques that work to help COPD patients sleep better with fewer interruptions.
Enroll in a pulmonary rehabilitation program. Pulmonary rehabilitation, a structured program of exercises to strengthen the breathing muscles, is one of the most effective ways to stay healthy with COPD. Pulmonary rehab can help COPD patients maintain and even improve physical fitness and conserve energy.
More ways to help the person in your care
Coughing fits become more frequent. A phlegmy cough or morning "smoker's cough" is often one of the first signs of COPD. The reason: Mucus is collecting in your loved one's air passageways, which are no longer as efficient at clearing themselves.
Help him or her explore the use of "controlled coughing." This technique, which a doctor can teach, is one of the best strategies for coping with the buildup of mucus in the airways.
Remind him or her to drink lots of water; it hydrates the respiratory system. If you get resistance -- some COPD patients resist drinking out of fear that it will trigger coughing -- see if a straw helps.
Use a humidifier when air is dry or at night during sleep.
Support him or her in learning airway clearance techniques. These techniques, which can help to expel excess phlegm, are taught as part of pulmonary rehabilitation or as part of a program of COPD breathing exercises, also called breathing retraining.
Be prepared for exacerbations. The term exacerbation is used by doctors to describe a flare-up or worsening of COPD symptoms. These can come on suddenly and can be scary. Sometimes the symptoms then go back to their previous level, but often after an exacerbation they remain worse than before.
Ask the doctor which medications you should have on hand in case of an exacerbation. Some types of inhalers are best for short-term treatment when COPD symptoms worsen.
If your loved one is struggling to breathe and inhalers don't provide enough relief, seek treatment as quickly as possible.
Exacerbations can be dangerous: Go to the emergency room if a same-day appointment isn't available.
If your loved one hasn't quit smoking, now is the time to talk about it. Suggest a quit-smoking class or support group and work with his or her doctor to use nicotine substitution products to make quitting either. Hypnosis can also help.
Sleep interruptions become more frequent. Any type of breathing problem, including COPD, can interfere with sleep by half-waking the person over and over. If this happens, the sleeper is prevented from going into or remaining in deep REM sleep.
Discourage sleeping in a chair. COPD patients often find they breathe better with their head elevated, making it tempting to sleep in a chair. But COPD patients don't sleep as deeply or stay asleep as long in a chair, experts caution, and as a result they're more likely to wake up feeling tired and suffer more fatigue.
Ask the doctor about testing for sleep apnea, particularly if you've noticed "snorting" or snoring. About 10 to 15 percent of people with COPD also have sleep apnea, marked by loud snoring, interrupted breathing, or pauses followed by sudden intakes of breath.
Review medication side effects. Some inhalers, such as those containing albuterol, can cause jitteriness, anxiety, and sleeplessness.
Notice heartburn and other symptoms of GERD. Studies show that more than half of patients with advanced COPD also have gastroesophageal reflux disease, or GERD. While this is less common in people with early-stage COPD, the two conditions can occur together. If GERD is a concern, talk to the doctor and ask for a referral to a gastroenterologist.
Depression can develop. Because COPD is progressive and feels like a limitation on daily activities, many people experience sadness, frustration, and depression as they cope with the condition. For some, depression can manifest as grumpiness, anger, and even rage. When you're caring for someone with COPD, you may find yourself a constant target of irritability, fault-finding, and anger.
Try to get the person you're caring for to open up about how he or she feels. Talking about fears and frustrations can help. But don't try to be a therapist; if the situation feels overwhelming, encourage him or her to seek professional help.
Lend a supportive ear when sadness strikes and the person you're caring for feels discouraged about no longer being able to do certain things; these are legitimate feelings to have.
Try not to dwell on the negative. Make concrete suggestions for ways to cope with COPD so that it's possible to continue meaningful activities. Go over each limitation and find a solution.
Don't let fear become one of those limitations. Some people with COPD overly limit themselves out of fear of triggering an exacerbation. But it's important for COPD patients to stay active and to continue to push their limits, because this is the best way to stay healthy. Turn the conversation in a positive direction whenever possible.
It can be difficult when the person you're caring for is irritable or angry. You're an easy target. If this is happening, find support for yourself; don't struggle on alone. Ask the doctor for a referral to a therapist and a support group.
How to take care of yourself
Be practical, but avoid pessimism. Based on what the doctor tells you at the time of diagnosis, you may be looking ahead and thinking that caring for someone with COPD will drastically change your life. This may be true down the line, but right now there isn't as much required; you don't want to use up your resources or burn out too early in the game.
Stay in touch with friends and family members. Keep up phone and e-mail contact with your support network.
Maintain regular activities and commitments. If you have a weekly book group, card game, or dance class, continue your involvement as always. Many COPD patients become demanding. Don't let this stop you; you're already sacrificing a lot. It's not healthy for anyone if you sacrifice everything you care about.
Stay in touch but don't stay home. Fear of exacerbations can make some COPD sufferers anxious, but with a cell phone handy there's no reason you can't maintain your normal routine.
Research COPD and become well informed, but try not to borrow trouble. COPD is a progressive disease, but it progresses at different rates, and there's no way to know what's down the line. Many COPD sufferers continue to have mainly mild symptoms for many years.
Seek emotional support. Find a COPD caregivers' support group. If there isn't one in your area, ask your loved one's doctor or social worker if the medical center can put you in touch with other families coping with this disease. If that doesn't work, seek help online, or look for a general caregivers' support group.
Don't try to go it alone. As COPD progresses, the person you're caring for will be less and less able to handle physical tasks around the house and elsewhere, putting more of the burden on you. That's not a workable solution now, and it will become increasingly unrealistic as the disease progresses.
Beware the "do it all" pattern. Early on, when your loved one is just beginning to face restrictions on his or her abilities, it's easy to become overly solicitous. Right now there's still a lot your loved one can do, and it's important for both of you to let him or her stay active and involved.
When the person you're caring for can't do something, try what some COPD caregivers call "task trading." If your loved one doesn't feel up to taking out the garbage, ask him or her to cut up the vegetables for dinner instead while you carry out the garbage. It's important to set boundaries early on.
Seek help for household tasks that are falling on your shoulders. If, for example, there's more gardening work to be done now that you're loved one can't easily do it, consider hiring some help if you can afford it. If not, ask other family members to help out.
How to build your family-and-friends support system
Expect denial. Understand that with a subtle, progressive disease like COPD, denial is a common reaction, especially among those who don't see your family member as often or spend as much time together as you do. It's typical for those who see family members primarily in group situations and festive gatherings to miss the subtle changes that you see day to day.
In the early stages of COPD, when symptoms are mild and intermittent, family members may have a hard time understanding and accepting that today's mild symptoms will develop into a serious condition that will require big decisions and changes down the road.
Stay in touch and share what your family member is experiencing. Update family and friends regularly, and don't minimize symptoms. Talk about your own feelings, too; if your loved one has an exacerbation and it's scary, say so. The more you share, the better they'll begin to understand what's happening and what's in store.
If family members seem to be in denial, suggest that they spend time doing physical activities with the person who has COPD, so they can experience what's happening. Don't limit their time together to meals and short visits, even if the person with COPD resists longer visits. It's much easier for people to understand the physical limitations that come with COPD if they see them firsthand.
Share what you learn. Most people are unaware of the stages of COPD, and of how physical symptoms can affect lifestyle and even change personality. Share the medical information that doctors provide and pass along links to articles and other research you discover.
Ask for help in specific ways. Many family members and friends will be willing to help but may not know what to do, or they'll need prompting.
Keep a list of tasks, from mowing the lawn to fixing the leaky faucet to picking up groceries.
When you request help, be as detailed as possible, and give plenty of advance notice unless it's an emergency. It's also helpful to mention time constraints or potential obstacles: "He might need extra time to walk from the parking lot, so plan to arrive 15 minutes early."
If possible, divide tasks into categories and give each category to one sibling or other family member. If one person handles everything related to medical bills, for example, there won't be a learning curve trying to bring someone else up to date. If one person's a good cook, let him or her handle meal requests and delegate as he or she sees fit.
Don't hesitate to ask family members who aren't close by or readily available to pitch in financially. If a family member pays for a housecleaner to come in once every two weeks, wouldn't that lift your burdens and free you to concentrate on caregiving?
Don't panic when people don't see eye to eye. Disagreements happen; not everyone will feel the same course of action is the correct one. Explain that there are many options available for COPD treatment and your loved one will be exploring lots of options.
Work your way patiently through difficult decisions. Let everyone bring his or her opinion to the table and be heard, but don't feel the need to reach consensus.
Make sure everyone has the most up-to-date information, and remind everyone what the doctor advises. Go through pros and cons. Once you've made a decision, stick to it long enough to give it a chance to work.
When complaints and criticisms come up, try not to be defensive. But set boundaries so it doesn't get personal. If a family member disagrees with something you're doing, let him or her take responsibility for coming up with an alternate plan or solution. Try to keep everyone focused on the practical side of things and keep things from becoming personal.
When there are big decisions to be made, call a family meeting so everyone feels included. Family conference calls can help include those who don't live close by. Setting up a family e-mail list can help streamline communication and share news.