Stage 4 COPD
What You Need to Know About Stage IV COPD
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 IV 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 stage, 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. Here's what to expect:
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.
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.
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.
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.
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.
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!