A Caregiver's Guide to Stage 4 COPD or Advanced COPD

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In Stage 4 COPD -- defined as having forced expiratory volume of below 30 percent of normal, as measured by lung function testing or experiencing chronic respiratory failure -- patients typically are having at least occasional severe breathing problems, requiring a comprehensive program of medications and oxygen to manage the disease.

At this advanced stage of COPD, your loved one likely has trouble maintaining a healthy weight as his or her chest muscles work harder to breathe, or he or she is overweight because of restricted physical activity. You may also be seeing heart problems caused by reduced oxygen in the blood and buildup of CO2. Symptoms can include edema due to a less efficient circulatory system or swelling in the ankles and feet from reduced circulation.

How to help the person in your care

1. Medication management becomes a challenge.

As breathing becomes more restricted, your loved one will need more medications to open his or her airways. Most COPD patients are on a number of different medications, both short-acting and long-acting. Keeping all the medications straight, understanding how they're used, and being aware of side effects is a big job.

Action steps

  • Develop a relationship with someone on the medical staff, usually a nurse, who can help set up a medication schedule and answer medication-related questions.

  • Ask about inhaler-enhancing devices. As your loved one's COPD becomes more severe, using standard inhalers becomes more challenging, since it's harder to time inhalations effectively. If using a metered-dose inhaler is becoming challenging, it can help to add a delivery device called a spacer.

  • For inhaled bronchodilators, ask the doctor about using a nebulizer, which is a device that creates a mist of the drug in the air. Nebulizers are now available as portable devices, including some that can be plugged into a car's cigarette lighter.

  • If the person you're caring for isn't using corticosteroids, ask the doctor to consider prescribing them to relieve breathing and prevent flare-ups. Doctors prefer inhaled corticosteroids because they have fewer side effects, but there are corticosteroids in pill form that you can ask for if your COPD patient is having severe flare-ups or continues to have obstructed airflow when attempting to use inhaled corticosteroids.

2. Be smart about supplemental oxygen therapy.

With advanced COPD, many patients need supplemental oxygen to keep their bodies functioning properly. The person you're caring for may resist starting oxygen therapy, but once he or she starts you'll both find that it improves quality of life considerably and makes it possible for your loved one to be more active and involved in everyday activities.

Action steps

  • Learn the pros and cons of oxygen delivery systems. Ask your doctor to refer you to a social worker or pulmonary rehab nurse who can explain the ins and outs of all types of oxygen systems and help you choose what's going to work best for your loved one -- and you.

  • Be a strong advocate in getting the best oxygen equipment covered by your insurance. Many COPD patients say their doctors and insurance companies didn't take enough time explaining all the choices available to them depending on their plan. Ask for a nurse or social worker to walk you carefully through the options and any steps needed to obtain coverage.

  • Get thorough training. In most cases, the oxygen supplier does the training, and it can be insufficient. Don't let your trainer leave until you and your loved one understand how the equipment works, its maintenance requirements, and who to call if you have questions.

  • Make sure you have replacement tubing, batteries, and all the attachments needed for portable systems.

  • Make sure you have a backup system, in case the primary system fails, and that you and your loved one know how to use it.

  • Ask about "water traps" that prevent condensation inside the hose. Companies often don't offer them unless you ask.

  • If your loved one hasn't quit smoking, now's the time to talk about it. In addition to all the other reasons to quit, smoking around oxygen equipment can be dangerous. Suggest a quit-smoking class or support group and work with his or her doctor to obtain the full range of nicotine substitution products.

  • If the oxygen equipment is electrically powered, save money by contacting your power company to see if they offer discounts to those on life-saving equipment. Some do -- and even if they don't, it's important to let them know to prioritize your household in the event of a power shutoff.

Tip: When you first open new plastic cannulas, they may have a chemical smell. Air them out for a few days before first use.

3. Mobility and physical activity are harder, but even more important now.

At this stage, many COPD sufferers begin to avoid physical activity because it triggers shortness of breath and fatigue, which can feel uncomfortable and scary. But continuing to stay active and to exercise are among the only things your loved one can do to help his or her lungs get stronger. Helping your loved one find ways to stay active with minimal discomfort is one of your most important jobs as a COPD caregiver.

Action steps

  • Help the person you're caring for experiment with mobility devices such as walkers and rollators (a fold-up walker on wheels, usually with a basket). Many people with advanced COPD find it easier to get around if they can lean on something. In addition, many walkers and rollators have a built-in seat that can be handy for stopping and resting, and COPD sufferers put their portable oxygen containers in the basket.

  • Help the person you're caring for overcome any embarrassment about using oxygen in public. Your loved one may worry about being stared at, but with time and experimentation, he or she will realize few people care and that physical activity is much more comfortable when using portable oxygen.

  • Find settings where walking is comfortable; many COPD sufferers like malls because they're air-conditioned and flat, with lots of places to sit and rest.

  • Buy resistance bands, free weights, and other home exercise equipment, so both of you can do simple exercises while watching TV or listening to music. If your loved one is on oxygen therapy, exercising at home can be more convenient.

  • If mobility is severely limited, talk to the doctor about wheelchairs and electric scooters. There are many more options available than there used to be, and you'll want to be well educated about what's available and what's covered by your insurance.

  • Don't give up on sex. If your loved one is a spouse or partner, it's important to work together to maintain an active sex life. Encourage him or her to take more passive positions if needed, or to use oxygen during sex; you may need to offer some reassurance that this is fine with you!

4. Prepare in advance for flare-ups.

Flare-ups can come on suddenly, and they need to be treated as quickly as possible to prevent them from worsening and causing a chain reaction of long-term problems. Talk to your loved one's doctor about what supplies you should keep on hand and what steps you should take to act quickly to obtain treatment for your family member when necessary.

Action steps

  • 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.

  • Be prepared for sudden trips to the hospital. Prepare a simple document that lists all your loved one's pertinent medical information, including a list of medications, that he can take with him if he has to go to the emergency room or call an ambulance.

  • Keep a hospital bag packed and ready so your loved one has what's needed should a trip to the hospital be necessary.

  • Stockpile antibiotics. Many flare-ups are caused by bacterial infections. Sometimes doctors will allow you to fill an antibiotic prescription ahead of time and keep the medication on hand so your loved one can take it right away in case of a flare-up.

  • Be on the alert for antibiotic resistance. Sometimes the first antibiotic prescribed doesn't work. There are many antibiotics available and doctors usually reserve the newer, stronger -- and more expensive -- antibiotics for more severe infections, or in cases where older, less expensive antibiotics haven't worked. If your loved one isn't getting better after 24 hours on an antibiotic, call the doctor and ask how long you should wait before trying a different one.

  • Consider a medical alert system so the person you're caring for can let someone know if he or she needs help.

5. Fatigue increases, and sleep is compromised.

When breathing is at less than 30 percent capacity, as it is with Stage 4 COPD, every activity can be exhausting. Your loved one may experience fatigue with even simple everyday activities. Meanwhile, breathing problems interfere with sleep quality, preventing restorative rest.

Action steps

  • Encourage your loved one to rest when he or she needs to or to use physical support when walking. Some COPD patients purchase a folding grocery cart and lean on it while they walk if they're not yet ready for a walker or rolling walker.

  • Set up the bathtub with a shower chair and a handheld shower head so your loved one can sit down if needed. Also install hand bars for safety and make sure there's a nonslip mat or surface.

  • 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.

  • Switch to an adjustable bed, which may be covered by Medicare. Raising the head of the bed makes it much easier for someone with COPD to breathe.

  • Talk to the doctor about sleep apnea. Many people with COPD also suffer from sleep apnea, a type of sleep-disordered breathing in which they briefly stop breathing, disrupting deep sleep. A type of sleep mask called a CPAP device helps ease breathing.

  • 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. If GERD is a concern, talk to the doctor and ask for a referral to a gastroenterologist.

6. Coughing fits become more frequent and severe.

As COPD advances, it becomes harder to cough up mucus because the lungs aren't as strong, and the phlegm thickens. The result: The lungs are no longer as efficient at clearing themselves.

Action steps

  • Watch out for steam in the shower, which can make breathing difficult; open a window while your loved one showers, leave the door open, or install an exhaust fan.

  • Pay attention to air quality. Many COPD sufferers find that car exhaust, air pollution, smoke, and pollen irritate their lungs and bring on coughing fits. As a caregiver, aim to notice whether it's smoggy outside and check for "spare the air" alerts and avoid situations likely to bring on coughing fits or flare-ups. You might not want the person you're caring for to get out of the car at a gas station, for example, if other cars are running their engines.

  • Ask others to respect the COPD patient's need to avoid irritants. Some people with COPD find that perfumes or air fresheners irritate their lungs and cause breathing problems, and nearly all COPD sufferers will react to secondhand cigarette smoke in an enclosed space. Ask friends and family members to refrain from wearing perfumes and smoking around the person you're caring for, and to unplug air freshener devices while you're visiting. You may even need to switch to natural cleaning products. COPD patients vary in terms of what they react to.

  • Help the person you're caring for 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.

  • 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.

7. Be on the alert for depression.

Because COPD is progressive and feels like a limitation on daily activities, many people experience sadness, frustration, and depression as they cope with COPD. 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.

Action steps

  • As COPD sufferers face more restrictions on what they can do, frustration, isolation, and sadness can lead to depression. Talking about fears and frustrations can help, but don't try to be a therapist. If you sense the person you're caring for could benefit from therapy or medication for depression, encourage him or her to seek professional help.

  • 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 work to 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

1. Be practical, but avoid pessimism.

Based on what the doctor tells you to expect from Stage 4 COPD, you may look ahead and dread what's to come. However, COPD is nothing if not unpredictable, and COPD patients experience a wide range of symptoms and limitations. In the case of advanced COPD, an approach of "plan for the worst, expect the best" is going to work best. You want to feel protected if your loved one's condition declines, but meanwhile you want to enjoy what today has to offer.

Action steps

  • Stay in touch with friends and family members. Keep up phone and e-mail contact with your immediate support network. If you need to, don't be shy about asking them to provide respite care or pitch in financially to help pay for home nursing help.

  • Make sure the person you're caring for has put legal protections in place, such as a durable power of attorney for finances and an advance health care directive and living will, so you're empowered to make medical decisions for your loved one should you need to.

  • Educate yourself on late-stage treatments, but try not to borrow trouble. COPD is a progressive disease, but it progresses at different rates. Talk to your loved one's doctor about what to expect, but don't panic or assume the worst. COPD sufferers "plateau" and maintain a certain level of symptoms for long periods of time.

  • 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.

2. Don't try to go it alone.

What typically happens as COPD progresses is that the person you're caring for can no longer handle physical tasks around the house, leaving you responsible for everything, even as you're caring for his or her health. Meanwhile, your loved one may resist visitors when he or she isn't feeling up to par, which can leave you isolated. Don't let fatigue and disability prevent you from involving family and friends in your loved one's life; you need their support.

Action steps

  • Encourage friends and family members to visit. As it becomes harder to travel and get out, it's increasingly important to be social at home. Be clear about what the person you're caring for can handle, so visits don't get too long or loud. If talking or eating together is a strain, do something relaxing, like watching TV together or playing cards.

  • Don't let yourself feel trapped. Many COPD sufferers fear being left alone, but it's also not good for your relationship for you to be chained together. Go out when you need to, using cell phones to stay in touch; if this doesn't feel safe, find someone to stay with your loved one while you get breaks.

  • Seek help for household tasks that are falling on your shoulders. If, for example, you can't keep up with the yard work on your own, consider hiring some help if you can afford it. If not, ask friends and family members to help you out when they visit.

  • Be germ-phobic. Because pneumonia is a dangerous risk for COPD patients, make clear that no one can visit if they're sick. Have everyone wash their hands when they enter the house.

  • Keep kids away from oxygen equipment. The knobs and dials look tempting to small hands, and changing settings can be highly dangerous.

How to build your family-and-friends support system

1. Stay positive, but be realistic.

A diagnosis of Stage IV COPD is scary for everyone, and peoples' reactions will vary from misunderstanding and denial to making dire predictions. Family members may have a hard time understanding and accepting the seriousness of your loved one's COPD, or they may become fatalistic and act as if it's time to give up and prepare for the end. Neither reaction is going to help you, the primary caregiver, so it's your job to help others see the situation as it is and pitch in to lend a hand.

Action steps

  • 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 with the person who has COPD -- taking a walk or doing something else that involves mobility -- so they can experience what's happening. 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 how profoundly advanced COPD affects lifestyle and even changes personality. Share the medical information that doctors provide, and pass along links to articles and other research you discover.

  • Be open about changes in your loved one's situation. Don't put on a "brave face" and keep details private. If you're exploring oxygen therapy, tell family and friends. When it's time to get a walker or wheelchair, discuss this with family.

  • Communicate clearly. If you need help exploring options or making decisions for palliative care, this is the time to ask.

2. 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.

Action steps

  • 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'll need to be dropped off at the front, then you'll need to go park and rejoin him, so plan to arrive 15 minutes early."

  • If possible, divide tasks into categories and give each category to one sibling or other family member. Let someone with technological expertise help you choose a medical alert system; let someone with mechanical abilities help you figure out the best portable oxygen system to use.

  • 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?

3. Don't panic when it's time for hard decisions.

Deciding what to do as COPD progresses can be difficult, and not everyone will feel the same course of action is the correct one. Expect discussion and disagreement, and keep your cool as each person airs his or her opinion.

Action steps

  • 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.

  • Meet complaints and criticisms with requests for help. 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 not to take it personally, and keep everyone focused on practical action.

  • 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.

  • Once decisions are made, let them go. Guilt and resentment are the twin ghosts that haunt of family caregivers. Once choices have been researched and decisions made, the only healthy strategy is to move on. Don't let bad feelings drag you down and sap the energy you need to continue caring for your loved one.

Melanie Haiken

Melanie Haiken discovered how important it is to provide accurate, targeted, usable health information to people facing difficult decisions when she was health editor of Parenting magazine. See full bio