Caregiving for Chronic Obstructive Pulmonary Disease (COPD)

When you or a loved one is diagnosed with chronic obstructive pulmonary disease (COPD), the only thing certain is that life is probably going to change. The features of the disease affect every area of a patient's life, including the ability to work and enjoy social activities. 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 tools to have in your COPD toolkit. If you're taking care of someone who is coming to the end of his or her life, there are also 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 emergencies before they happen. It may help to talk to your loved one's doctor 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 the cigarette habit is the number one priority for someone with COPD and one of the best ways to slow the progression of the disease. Here are a few tips 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. Furthermore, when someone is trying to quit smoking, nothing weakens the resolve to quit more than the smell of someone lighting up. If you must smoke, do so outdoors when your loved one isn't around.
  • Remove anything associated with smoking from your loved one's view. This includes cigarettes, ashtrays, and lighters.
  • Distract him or her with alternative, healthy activities when a craving arises. Try a board game, a massage, or a walk to the park.
  • Keep candy dishes filled with healthy snacks to curb those annoying cravings.

Provide Exercise Motivation

People with COPD will feel better—and stay stronger—with regular exercise. If COPD symptoms make it difficult to exercise, encourage an approach to exercise that includes starting slowly: three to five minutes 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 him or her. 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 activities of daily living. 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 Energy Conservation

COPD literally 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 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

Use 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.

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, 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

COPD is the third leading cause of death in the United States, behind only heart disease and cancer, yet it's amazing how little people know about it. 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 he or she is going through. Here are some ways you can do your part:

End-of-Life Issues

If you believe the death of your loved one is approaching, it's time to deal with managing his or her 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 his or her 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 in the final days. Common symptoms associated with the end of life and COPD 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.

Dyspnea and anxiety have been reported as being the most troublesome COPD symptoms associated with the end of life. Controlling these symptoms involves careful assessment and treatment, preferably by your hospice nurse, using a combination of medication and non-medication-related interventions that may include medications 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 and if indicated
  • Glucocorticoids, since the drug's negative side effects, are no longer a consideration at this stage
  • Benzodiazepines for 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
  • Directing a gentle fan toward your loved one's face
  • 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 with a drug wears off/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
  • Nebulized lidocaine, which if used, means your loved one shouldn't eat for at least 30 minutes after administration due to the risk of aspiration

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.

It is advisable, however, 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. 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 him or her to eat.
  • Offer foods that she enjoys, regardless of nutritional value. If she wants 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.

Confusion

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

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. 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. Don't hesitate to seek support. There are many resources that can help you deal with your grief and, at your own pace, move ahead with your life. 

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