Caregiving for Chronic Obstructive Pulmonary Disease (COPD)

When you or a loved one is diagnosed with chronic obstructive pulmonary disease (COPD), the only thing that's certain is that life is probably going to change. The features of the disease affect every aspect of a patient's life, including the ability to work and socialize. If you're a friend, family member, or caretaker of someone with COPD, recognizing the extent of the limitations imposed by the disease and knowing what you can do to help are invaluable.

If you're taking care of someone who is coming to the end of their life, there are additional issues to consider.

Be Prepared

COPD exacerbation is the number one reason that people with COPD seek emergency treatment and are admitted to the hospital. An exacerbation of COPD is often accompanied by worsening symptoms like shortness of breath, called dyspnea, and cough.

Keep a list of emergency contact numbers in your phone and make sure you know how to recognize COPD or respiratory emergencies before they happen. It may help to talk to your loved one's healthcare provider about what you should be on the lookout for.

Encourage Healthy Habits

Lifestyle changes can go a long way in helping someone with COPD ease their symptoms. As a loved one, you may be able to play a significant role in helping make those changes a reality.

Support Smoking Cessation

Kicking a cigarette habit is the number one priority for someone with COPD and one of the best ways to slow the progression of the disease.

To help your loved one quit:

• If you smoke, don't smoke inside the house or anywhere near your loved one. Secondhand smoke causes further lung damage and contributes to worsening COPD.
• If you must smoke, do so outdoors when your loved one isn't around. Nothing weakens the resolve to quit more than the smell of someone lighting up.
• Remove anything associated with smoking from your loved one's view. This includes cigarettes, ashtrays, and lighters.
• Distract them with alternative, healthy activities when a craving arises. Try a board game, a massage, or a walk to the park.
• Keep small dishes filled with healthy snacks such as nuts or granola to curb cravings.

Provide Exercise Motivation

People with COPD will feel better—and stay stronger—with regular exercise. Exercise helps build endurance and muscle strength, ultimately making it easier for your loved one to breathe.

If COPD symptoms make it difficult to exercise, encourage a slower approach: three to five minutes of activity at a time, several times a day, working up to longer periods.

Of course, the best encouragement you can provide for your loved one is to exercise right along with them. You may want to limit or avoid conversation during activity, as it may make it harder for your loved one to breathe and keep going.

Prepare Healthy Meals and Snacks

People with COPD need a healthy, well-balanced diet to maintain adequate energy to breathe and complete their daily activities.

Stock up on fresh fruits and vegetables, limit red meats and processed foods, choose alternate protein sources like nuts and seeds, and consider buying a juicer to whip up nutrient-rich beverages.

Modify Your Home

By making some changes to the way your home is set up or its features, you may provide more relief for your loved one than you may think.

Promote Physical Energy Conservation

COPD drains a person of vital energy, leaving very little for necessities like breathing and eating. Energy conservation is an important part of disease management that you can promote in a number of ways, including:

• Organizing items most used by your loved one so that they are primarily on the first floor of your home
• Lowering shelves so that your loved one does not have to reach, or putting most-used items on bottom shelves
• Placing a shower chair in the shower

Set Up a Fan or Air Conditioner

Some people with COPD find that a fan blowing directly on their faces or an air conditioner running continuously helps them breathe easier. If this is true for your loved one, try setting the thermostat at a comfortable, cool temperature for everyone in the house. If you find you're uncomfortable in a cooler environment, bundle up with extra blankets or a sweater while indoors.

Secure Monitoring Equipment

If your loved one is on oxygen therapy, having an FDA-approved pulse oximetry monitor on hand can help you and your loved one know if they are effectively getting enough oxygen.

Just like the fingertip pulse oximeters used at the healthcare provider's office, there are several compact models available for home use that can help give you an accurate sense of oxygen saturation levels. If necessary, you can help log and keep track of the data so it's available to discuss with a healthcare provider or home health aide.

Because many patients with COPD experience COPD complications such as high blood pressure, a home blood pressure monitor is another essential part of your caretaker's toolkit. Not only can an at-home monitor provide regular blood pressure readings, but some models also include an automatic alert feature if an irregular heartbeat is detected.

Improve Your Indoor Air

Indoor air is sometimes more polluted than outdoor air, and that pollution can exacerbate symptoms and worsen COPD. Improving the quality of your indoor air will help keep the air you and your family breathe cleaner and healthier.

Though this may not readily come to mind, the products you use may contribute to this. Beauty products that contain heavy scents, like perfumes, hairsprays, lotions, and aftershaves, give off strong odors that can further irritate your loved one's inflamed airways, causing COPD symptoms to worsen. When you're around your loved one, it's best to go without these.

Similarly, fumes from harsh chemicals can worsen COPD and exacerbate symptoms. Use only non-toxic cleaning products when cleaning your home, and don't forget to provide adequate ventilation.

Educate Others

In 2021, COPD was the sixth leading cause of the death in the U.S. behind heart disease, cancer, COVID-19, accidents, and stroke. It's also a disease surrounded by unfortunate myths and stereotypes.

Help increase awareness of COPD by spreading the word about its causes, symptoms, diagnosis, treatment, and prevention; your loved one may benefit from having others better understand what they are going through.

Visiting World COPD Day on Facebook can give you some starter ideas. Printing out the COPD Self-Assessment Tool is useful for anyone who you think is at risk for the disease.

End-of-Life Issues

If you believe the death of your loved one is approaching, it's time to deal with managing their end-of-life issues. These can be difficult to manage, particularly when you're dealing with a chronic, debilitating illness like COPD. Because of this, you and your family may want to consider enlisting the help of a hospice provider to guide you through this time.

Whether or not you choose hospice, if your loved one is dying, you probably have a lot of questions about how to provide adequate comfort and support during their final days. Here are some ways to help.

Managing Symptoms

Symptom management is one of the most important aspects of end-of-life care because COPD symptoms often worsen at this stage.

Common symptoms associated with COPD and the end of life include a worsening of dyspnea and cough, increased pain, anxiety and depression, confusion, anorexia, and cachexia, a condition defined by weight loss, muscle atrophy, and fatigue.

Controlling these symptoms involves careful assessment and treatment, preferably by your hospice nurse, using a combination of medication and non-medication-related interventions such as:

• Bronchodilators to reduce dyspnea
• Diuretics, if fluid retention due to related heart problems is worsening dyspnea
• Opioid narcotics, preferably taken orally or buccally (between the cheek and gums)
• Oxygen therapy, which is used carefully if indicated
• Glucocorticoids, since the drug's negative side effects are no longer a consideration at this stage
• Benzodiazepines for the relief of anxiety
• Thorazine for severe agitation

Non-medication-related interventions for managing dyspnea that you can implement on your own or help your loved one with include:

• Elevating the head of your loved one's bed at least 30 degrees
• Encouraging your loved one to try pursed-lip breathing
• Aiding with relaxation and visualization techniques
• Providing therapeutic massage
• Incorporating music therapy using live instruments, CDs, or the radio

Pain Control

Controlling pain is an issue during the final stages of life with COPD and every effort should be made to alleviate discomfort. Pain medication should be given around the clock to avoid a lapse in relief that can come when a drug wears off or there's a delay in administration.

Expectorants and mucolytics do little to relieve a cough during the final phases of COPD. Other methods may provide more effective cough relief, such as:

• Warm, humidified oxygen or use of a humidifier in the room
• Opioids, such as codeine or morphine, taken orally

Be sure to talk to your loved one's hospice nurse regarding any medical treatments.

Refusing to Eat

It's difficult to watch someone you love refuse life-sustaining nourishment, but this is a very common symptom among dying patients. In fact, in the last three days before death, many patients are unable to eat.

Here are some tips with regard to nutrition and hydration at the end of life:

• If your loved one doesn't feel like eating, don't force them to eat.
• Offer foods that they enjoy, regardless of nutritional value. If they want ice cream for breakfast, serve it.
• Consider enteral tube feeding if this is something that your loved one has expressed a desire for.
• Provide frequent oral care using moisture swabs and ice chips to avoid oral conditions related to dehydration.

It is also advisable to ensure that something else is not contributing to the loss of appetite, such as loose-fitting dentures, sores in the mouth, oral thrush, pain, or nausea.

Confusion

When a COPD patient is terminal, there are a number of factors that can cause confusion, including:

• Medications
• Hypoxia
• Uncontrolled pain
• Lack of sleep
• Urinary retention
• Physiological imbalances

Treatment should be directed toward the cause if it can be determined. For example, if the underlying cause of confusion is hypoxemia, a lack of oxygen in the blood, then supplemental oxygen can be used to correct it. If it's related to urinary retention, you can discuss Foley catheter placement with your hospice nurse.

Depression

The end of a person's life can be a time of deep reflection for both patient and family. It can also be a time of great sadness.

Simply holding your loved one's hand and listening may provide the comfort that words cannot. Be sure to address any spiritual needs that your loved one may have as well. You may even want to ask a priest, pastor, or counselor to help.

Encourage your loved one to talk about his or her feelings and to address any unresolved issues openly and freely.

When Death Is Near

When death is close, the body naturally begins to shut down. Manifestations of this may include:

• Increased sleepiness
• Increased confusion and agitation
• Visions and hallucinations
• Unresponsiveness and/or unconsciousness
• Decreased interest in food or water
• Withdrawal from others
• Inability to control bowels and/or bladder
• A decrease in body temperature; skin feels cold to the touch
• Dark, concentrated urine; decrease in urine output
• Increased, uncontrollable pain
• Irregular breathing patterns
• Gurgling or other disturbing noises heard when breathing
• Unintentional movement
• Changes in blood pressure, respiration, and heart rate
• Loss of reflexes

Consider having someone there to support you if you are witnessing this moment.

After Death

After your loved one has passed, you will undoubtedly feel a number of mixed emotions from relief, to anger, to intense sadness. It's important to understand that these are normal reactions and part of the grieving process.