Living with COPD

Preventing a COPD flare

COPD is a combination of emphysema and chronic bronchitis. Together they damage the structure of the lungs, making it difficult to take in much oxygen. This results in fatigue, “air hunger,” anxiety, and frequent infections. Other symptoms include pain, coughing, and trouble sleeping. People with COPD frequently become isolated and depressed. So do their family caregivers.

COPD is known for flare-ups that rather suddenly make breathing much more difficult. Often the patient needs to go to the Emergency Room. Every flare-up is stressful. It also has the potential to make the disease get worse at a faster rate.

Tips for daily life

Here’s what you can do on a daily basis to ease breathing and reduce the chance of a flare:

• Open a window
  Fresh air is refreshing! If weather permits and the air is clear (no smog or smoke, low pollen count), this can be a natural way to promote easy breathing.
• Run a fan
  If your loved one enjoys it, you can even point the fan to blow air directly toward his or her face.
• Add moisture to the room
  Hot air and a dry throat can make it harder to breathe. A simple humidifier adds moisture and soothes the airways.
• Raise the head of the bed with pillows
  Lying flat makes breathing more difficult. Lying more upright relieves pressure on the chest. It also reduces the tendency to cough.
• Lie on one side to sleep
  Some positions are more comfortable than others. For sleeping, try lying on the side with the head slightly elevated. Experiment to find out which position feels best for your loved one.

Make changes around the house:

• No smoking
  If your loved one has breathing problems, he or she should not be smoking at all. Smoke from the cigarettes of others also clogs the air and makes it harder for your relative’s lungs to do their job.
• Eliminate or reduce strong smells
  Perfumes, bleach, household cleaners, and paint fumes all represent chemical particles in the air. These can “catch at the back of the throat” and make it harder to breathe.
• Remove dust and replace air filters
  A thorough dusting will remove this common irritant. (Best to do this on a day when your relative can be out of the house!) Replacing furnace and air conditioning filters will also reduce particles in the air.

Avoid colds or respiratory infections
These lung illnesses can spark a flare.

• Stay current on vaccinations
  Make sure your relative keeps up with flu and pneumonia vaccines.
• Avoid crowds
  During flu season, your loved one should avoid public places. Ask friends to be mindful of their own health before visiting.
• Wash hands frequently
  Fingers and hands collect bacteria from everything! Have your relative avoid touching his or her eyes, mouth, and nose. Bring a personal pen for use in stores, at the doctor’s, etc. Carry hand sanitizer or wipes.
• See the dentist regularly
  Good dental hygiene helps protect against infection. 

Promote overall health

• Sleep
  Getting adequate sleep is important for a person with COPD. So is adequate rest. Pace activities and make time for naps in the day.
• Exercise
  There is a fine line between too much exercise and not enough. Walking is recommended. But talk with the doctor first. Special lung-friendly activities have been designed for persons with COPD. There may even be a “Better Breathers Club” nearby where your relative can meet and work with others who also have COPD.

Ask your health care provider about

• breathing exercises
  Depending on your loved one’s condition, simple exercises can expand the lungs. Something as simple as singing favorite songs might help. It doesn’t feel like exercise, yet it naturally (and joyfully!) encourages deeper inhales and stronger exhales.
• oxygen therapy
  Providing your loved one with more-concentrated oxygen is another way to address air hunger. There are significant lifestyle changes that come with using oxygen. There can be no smoking in the house. (Oxygen is extremely flammable!) And your loved one will need to have a cannula (plastic tube) across the face under the nose. It also requires keeping an oxygen tank nearby. (They often come with little carts or small canisters that can be carried in a large handbag or backpack.) For all that, oxygen therapy can be extremely effective in providing adequate air.
• medications
  Depending on the type of breathing problem, there are medicines and inhalers that can help. Ask about prescriptions that would be most effective for your relative’s situation.
• daily weight checks

In the advanced stages of the disease, fluid may build up in the body. This can be a sign that a flare is brewing. Weigh your relative once a day, in the morning, after urinating and before eating. In general, a weight gain of two to three pounds from one day to the next means that fluid is starting to build up. Work with the health care provider to determine how much weight means a problem and what you should do to nip a flare in the bud.

Create an Action Plan

Develop a personalized action plan with your relative’s health care provider. The office may even have classes or nurse educators to help. Think of the plan in terms of

• Green light: everything is within normal limits.
• Yellow light: caution, need to make some changes at home.
• Red light: go to the hospital.

Ask about the range of normal for each of the symptoms below (green light). What prompts a yellow light response (changes at home)? When do you need to go to the hospital (red light)?

• Feeling more breathless than usual
• Extreme fatigue
• More coughing, with thicker phlegm or mucus
• Needing to use a quick-relief “rescue” inhaler or nebulizer more often
• Weight gain of three pounds or more in a day’s time. This may be the result of fluid build-up. Check for increased swelling around the ankles
• Inability to sleep well because of breathing or coughing difficulties
• Lack of appetite

The doctor may suggest

• special medications
• special breathing exercises
• increased oxygen

Have these on hand and ready for use at the yellow light level. Call the doctor immediately if these treatments don’t help and the condition seems to be getting worse.

Reducing anxiety

Constant coughing and fatigue can be wearing. Add to it a persistent hunger for air and your loved one may develop a great deal of anxiety about breathing. Each breath becomes a worry. Reducing that anxiety can do a lot to improve your relative’s quality of life.

• Deep breathing
  When people get anxious, they take shallower breaths and breathe more quickly. This can actually make things worse. Shallow breathing does not clear the air sacs of the lungs, so there is less room to bring in fresh oxygen. Taking slow, very measured breaths is not only calming, it also helps solve the problem of lack of oxygen. Have your loved sit upright and then take one inhale slowly for a count of 4. Then try for a sustained exhale over a count of 4. Start again. Continue.
• Pleasant distractions
  Engage in conversation about topics that have been of interest in the past. Keeping the mind focused on other things can help your relative weather a short spell of anxiety.
• Guided imagery
  Visualizations can help ease the mind and reduce anxiety. With closed eyes, your loved one imagines a place that is cool and peaceful. Perhaps the beach or a brook in the mountains. Try to draw on as many senses as possible. Describe the smell of the trees, the sound of the water in the stream, the light coming through the trees. Perhaps put on some soothing music. Whatever you can think of to immerse your loved one in a tranquil environment.
• Medications
  Ask your health care provider about medicines that can help.

Combating fatigue

Help your family member learn to conserve energy—physical energy—so he or she has enough “fuel” to enjoy special activities and to exercise according to doctor’s orders.

It’s a simple strategy: Consider that there’s a limited amount of energy each day. If your relative is careful how energy is used for the routine tasks in life, he or she will have enough left over for necessary exercise and life’s pleasures.

Plan for the entire day and pace activities. Encourage your loved one to

• allow ample time
  Planning ahead allows for a more leisurely pace. Rushing wastes energy.
• alternate activity with rest
  Divide large chores into smaller tasks spread across the day or week.
• work smarter
  Minimize trips up/down stairs. Shop with a list and in as few stores as possible. Cook in quantity and freeze the extra. Soak dishes first for less scrubbing later. After a bath, slip on a terrycloth bathrobe instead of drying with a towel.
• get help when you can
  Have medications and groceries delivered.

Throughout the day, there are many opportunities to reduce standing, walking, lifting, and bending:

• Sit down whenever possible
  When cooking, cleaning, bathing, dressing, or grooming face and hair, have a stool or seat handy.
• Create task stations
  Lay out supplies at waist height so everything is within easy reach before you start cooking, cleaning, bathing, or dressing.
• Wheel or wear, don’t fetch
  Use a cart on wheels, a walker with a basket, a pocketed apron, or a fisherman’s vest to keep supplies at hand.
• Use extensions
  To avoid bending and reaching, use a grabber for objects, an elevated toilet seat, and elongated handles on shoehorns, brushes, and dustpans.

COPD tips for families

Anyone living with or helping someone with COPD will find it is a big job. And it takes its toll. In addition to daily assistance, COPD is unpredictable. There are good days and bad days. Your loved one can tire easily and may need to cancel even the most cherished plans.

“Cabin fever”
The inability to make plans and get out of the house can be especially hard for spouses who are used to doing things together. “Cabin fever” is common for both the patient and family members. So is depression.

The importance of breaks
Staying cooped up and becoming depressed yourself will not be of service to the person you care for. You need to cultivate other activities to recharge your batteries.

Isolation and depression
Isolation frequently leads to depression in both patients and their partners. It has also been linked with worsening physical health among family caregivers. Unfortunately, spouses tend to feel guilty if they go out with friends or engage in pleasurable activities. But isolation only puts their own health, and ability to care for their loved one, at risk.

Solutions to “cabin fever”

• Create personal time
  Set aside time each day for a pleasant activity unrelated to caregiving. Even just 10 minutes reading a favorite book or talking with a friend can do wonders.
• Stay active
  Do something physical every day, even if it’s just a walk around the house or yard.
• Reach out
  Maintain relationships with others, even if just by phone or email. Join an online support group to connect with people who understand.
• Do something carefree
  Take a real break now and then. Do something carefree. There are 168 hours in a week. Taking one or two hours for personal time without responsibilities is not too much to ask!

Explore palliative care

If your loved one has had several recent ER visits, it sounds like the symptoms are flaring a lot. You might want to ask for a palliative care consult. (You don’t have to have numerous ER visits, though. Concern about your loved one’s quality of life is reason enough.)

The “relief” experts
Palliative care is a special branch of medicine. Its providers are experienced in easing physical and emotional distress. They focus on the relief of difficult symptoms. Their goal is to improve quality of life for the patient and the family.

Holistic approach
Palliative care providers look at medical and nonmedical solutions. For instance, with COPD, there are medicines that can help reduce the intense feelings of “air hunger.” Palliative care specialists can recommend exercises that let more oxygen into the lungs. It may be that massage will help relieve any pain or discomfort.

Palliative care specialists have strategies to reduce coughing. And methods to address insomnia. They can show you relaxation techniques for breathing anxiety. They can prescribe medicines. They can also work with you and your loved one to treat depression.

Be ready for the ER

About one of every five seniors goes to the Emergency Room in a given year. Most ER visits are literally “by accident.” But some conditions, such as COPD, result in frequent trips to the ER. Packing an “ER kit” and having it ready to go at a moment’s notice can reduce some of the stress.

Create an “ER kit” and keep it updated with

• medical information
  A list of your loved one’s conditions, medications, allergies, and past surgeries. Include contact information for current physicians.
• insurance information
  A copy of your family member’s insurance card(s). Include any prescription or supplemental policies.
• advance directive
  This helps ensure your loved one’s preferences for life-sustaining treatment are followed. (See our article about health care planning.)
• a change of clothes
  This will come in handy if your loved one’s garments become wet or soiled.
• stress-relieving supplies
  ER visits are often lengthy and tiring. Pack water and snacks and cash for purchases. A pen and paper, a light sweater, and reading material or CDs can also come in handy.

What to Do: Strive for balance.

• Stay calm
  Support your loved one with your calm attention.
• Provide information to ER staff
  Your input is essential to help them understand what’s different from “normal.”
• Ask for periodic updates
  It’s fine to ask every 40 to 60 minutes for an update. If your family member’s condition seems to worsen while you are waiting, alert ER staff immediately.
• Observe and take notes
  Write down what procedures were done and what medications were given.
• Get instructions
  Don’t leave without written instructions. Ask specifically about the diagnosis, follow-up care, and any new prescriptions. Be sure you understand when to call the doctor. If you are uncertain, ask questions until you know what to do.

Treatment decisions

If your loved one is seriously ill, he or she probably needs to make decisions about which treatments to pursue. These are deeply personal choices. And they aren’t always easy.

Weigh the options

• Compare pros and cons
  Gather information into one document, perhaps a spreadsheet. Note as much as you can about each treatment:
  • What are the benefits/advantages?
  • What are the risks/disadvantages? For instance, are there any side effects?
  • What will “success” look like? (“How good does it get?”)
  • How likely is that outcome?
  • Will your loved one still be able to do the things that give him or her pleasure or purpose?
  • What about the option of “no treatment”? If a cure is questionable and treatments are difficult, this option may be worth considering. The person you care for might prefer to stay comfortable and pain free and spend his or her remaining time and limited energy on those activities that provide pleasure and meaning in life.
• Apply personal values
  For each treatment option, rate how important each benefit is: five stars for extremely important versus one star if it doesn’t matter much. Use this system for rating the disadvantages, too. Looking at the number of stars for each option is very helpful while making a decision.
• Ask the support system
  Serious treatment decisions are often made in consultation with others: the doctor, a spouse, other family members. They can be valuable counselors. But ultimately the decision rests with the patient. What does the support system say? Does your loved one agree with them? Why or why not?

Our article about quality of life may offer insights to help with difficult choices.