Lung conditions, like COPD (chronic obstructive pulmonary disease), can be exhausting. Not being able to breath is very frightening, for the patient and for those present in the room.
Breathing impacts all aspects of daily life, such as eating, bathing, housework, and socializing. Frequently people with COPD end up in the emergency room because of breathing problems. Daily monitoring goes a long way toward preventing such crises. But it requires effort on the part of the patient, and usually on the part of family members as well.
If your loved one has COPD, there is a lot you can do to help. Recognize, however, that it’s a big job and can be very tiring. Beyond daily assistance, lung conditions such as COPD are very changeable. There are good days and bad days. Your relative can suddenly become too tired and need to cancel plans at the last minute. “Cabin fever” is common for both the patient and family members. So is depression.
As a family caregiver, you want to be sure you can continue helping over the long term. One of the best ways to assure this is to take breaks. It’s not selfish; it’s a necessity! Staying cooped up and becoming depressed yourself will not be of service to your loved one. You need to engage in activities with others, have an interest besides caregiving. By taking time off, even just an hour or two, you can come back with renewed energy.
If you are concerned about your relative’s physical symptoms or emotional well-being, or if you have had several recent ER visits, you might want to ask for a palliative care consult. Palliative care providers are experienced in easing the physical and emotional distress of living day-to-day with a serious condition. They take a holistic approach. They look at medical and non-medical solutions to the challenges of daily living for both the patient and family members.
In the meantime, here are some things you can do to make daily life with COPD the very best possible:
Avoiding crises with COPD
With periodic flare-ups and dashes to the ER, it’s easy to feel overwhelmed when caring for a family member with COPD.
The COPD Management Tool, developed by the American Lung Association, empowers you to help your relative prevent crises through better management of the disease. Several simple forms guide you in communicating with the doctor so you are all on the same page. Best of all, the forms take the guesswork out of decision making on those days when symptoms start to flare.
The tool has two components:
- The COPD Management/Action Plan. Complete this one-page document with the doctor. The first section, in blue, summarizes your family member’s current lung conditions and the doctor’s basic treatment plan. The “COPD Action Plan” section provides at-a-glance descriptions of what to do, depending on how your relative is feeling. It groups symptoms into good days (green), bad days (yellow), and emergency situations (red). Review these descriptions with the doctor so you and your loved one will know what to do in each case.
- The COPD Report Card. This two-page form helps you give your care providers a quick snapshot of how things have been going since your last visit. Before a routine check-up, use it to summarize symptoms. During a flare-up, refer to it to describe recent symptoms for emergency personnel.
The forms take only minutes to complete. And once the management and action plans are in hand, you and the person you care for will find it much easier to know what to do when symptoms get worse. Now that’s a plan for staying out of the ER!
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Breathing and anxiety: Proven relaxation techniques
Anxiety is no stranger when you are caring for someone who is seriously ill. Or, for that matter, when you ARE the person who is ill. Medical emergencies, financial worries, everyday care issues. They all cause stress.
And emotional distress sets off a physical reaction. When we feel scared or angry, our heart rate and blood pressure increase, and our breathing speeds up. When the stress is chronic, our “fight-or-flight” response may be engaged for days, weeks, or months. That’s hard on the body. And it’s a particular concern for families dealing with breathing problems.
Shortness of breath can generate anxiety, which causes one to feel short of breath, creating more anxiety…It’s a nasty downward spiral.
You and your relative can take the edge off by learning to relax. Relaxation stops the stress reaction and even makes breathing easier. It also clears the mind, enabling less anxious thinking about any issue at hand.
Following are three basic relaxation techniques that take about 10 minutes each.
- Deep breathing. Sit comfortably, feet on the floor. Put one hand on your chest, the other just under your ribs. Breathe slowly through your nose, counting to five. Only the hand at your belly should rise. Exhale slowly, counting to five. Repeat.
- Muscle relaxation. Lie down or sit comfortably. Starting with your toes, tense and relax your muscles, moving up your body to calves, thighs, etc. Count to five while tensing and to 30 while relaxing. Notice the difference between tense and relaxed.
- Visualization. In a quiet place, lie down or sit comfortably. Imagine yourself at your favorite place of tranquility (beach, mountains, etc.). Bring in as many elements of the place as you can: what you would be seeing, smelling, hearing, touching.
Share these techniques with your loved one. It takes dedication and practice, but everyone benefits from better stress management.
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Diet: How your food affects breathing
We’re all aware that diet affects health. But did you know that people with COPD (chronic obstructive pulmonary disease) can help themselves breathe better by making simple changes to their eating habits?
What we eat
The food we eat combines with the oxygen we breathe to create energy and carbon dioxide. Our body needs the energy to function. The carbon dioxide is a waste product we need to exhale out of our bodies. Too much of it is toxic. But having to exhale a lot can be tiring.
- Limit sugar and sugary foods such as candy, cake, and soft drinks. Carbohydrates (sugars and starch) produce more carbon dioxide than fats or proteins. They make more work for the lungs.
- Fats produce the least carbon dioxide. The best fats are polyunsaturated fats such as vegetable oils and soft margarine (look for those labeled “zero trans fat”).
- Protein is necessary to maintain the respiratory muscles. At least two servings a day is recommended: eggs, dried beans, dairy products, and meats.
- Limit foods that produce gas, such as carbonated beverages, dried beans, cauliflower, and broccoli. They cause the stomach to expand which puts pressure on the diaphragm.
- Limit salt. It can cause the body to retain fluid, making it harder to breathe. See our article under congestive heart failure on reducing salt.
The way we eat
- Consider eating four to six small meals a day and minimizing fluid intake at mealtime. It’s harder to breathe when your stomach is full.
- Eat earlier in the day. If energy is generally low by dinnertime, focus on consuming more of the day’s calories in the morning and afternoon.
As always, check with a doctor or dietitian to determine the diet that is right for your family member. You can search for a registered dietitian near you at www.eatright.org.
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Fatigue: When your loved one gets tired easily
Does the person you care for seem to “run out of gas” quickly, even when doing simple things around the house? Help your family member learn to conserve energy (physical energy) so he or she has enough “fuel” to enjoy special activities and exercise according to doctor’s orders.
It’s a simple strategy: Consider that there’s a limited amount of energy each day. If you’re careful how you use it for the routine tasks in life, you will have enough left over for necessary exercise and life’s pleasures.
Plan for the entire day and pace activities. Encourage your relative to:
- Allow ample time for what needs to get done. 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, consider 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 an elevated toilet seat, a grabber for objects, and elongated handles on shoehorns, brushes, and dustpans.
By learning to operate on “cruise control” whenever possible, your family member can get further on a day’s tank of energy.
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How to beat "cabin fever"
Feeling housebound is common among family caregivers, and is particularly so for partners caring for a loved one with an “unpredictable” disease. Some conditions, such as COPD make planning difficult because the patient’s stamina can fluctuate dramatically. The inability to make plans and get out of the house can be especially hard for spouses who are used to doing things together.
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 staying cooped up only puts their own health, and ability to care for their loved one, at risk.
There are many solutions to “cabin fever.” Help your relative’s spouse:
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- Reach out. Maintain relationships with friends and family, even if just by phone or email. Join an online support group to connect with others who understand.
- Create personal time. Set aside time each day for a pleasant activity, unrelated to caregiving.
- Stay active. Do something physical every day, even if it’s just a walk around the house or yard.
- Get out of the house. Take a real break. Do something carefree. There are 168 hours in a week. Taking one or two hours for personal time without responsibilities is not too much!
- Safeguard health. Encourage your loved one’s spouse to talk to a doctor if you think he or she may be depressed. Depressed caregivers have much greater health risks. If they hesitate, remind them they will not be able to help their partner if their own health goes south!
Planning for travel with oxygen
If your family member needs medical oxygen, the crucial ingredient for successful travel is planning ahead.
First, decide how you will be traveling. By air, train, or cruise ship? By bus or car? This information will help determine how much oxygen your relative must carry.
- Consult with the doctor for medical clearance to travel. Obtain a brief medical history to carry along. Include a list of current medications and an oxygen prescription.
- Create a list of contact information of health care providers.
- Check the health insurance plan for guidelines regarding out-of-area medical emergencies. The International Association for Medical Assistance to Travelers has a tipsheet for traveling with lung (pulmonary) conditions.
- Have a respiratory therapist calculate how much oxygen will be needed. Allow for an extra supply in case departure or arrival times are delayed.
- Contact the airline, train, cruise ship, or bus company to make arrangements for oxygen. The requirements are different for each mode of travel.
- When flying, prepare for getting through the security checkpoint with oxygen.
- When traveling by car with oxygen, secure the tank in an upright position. Ensure that no one smokes. Crack the window to prevent oxygen build up.
Vacation days, have your loved one
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- Wear emergency medical identification. Keep medications on hand at all times. Pack them in carry-on luggage and day-trip gear. Include a current prescription list and contact information for all health providers.
- Stay hydrated. Airplane air is especially dry. Drink lots of water and skip the caffeine or alcohol.
- Avoid sitting for long stretches of time. Try to move around every hour or so.
- Keep up to date about air pollution and weather at their destinations. Be alert to conditions that may make breathing more difficult.
If you have to go to the Emergency Room
About one of every five seniors goes to the ER in a given year. Most ER visits are literally “by accident.” But some conditions, like COPD, often result in frequent trips to the ER. Taking a few simple steps to prepare ahead of time 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 supplemental policies.
- Advance directive: This helps ensure your loved one’s preferences for life-sustaining treatment are followed.
- A change of clothes in case 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.
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- Support your loved one with your calm attention.
- Provide information to ER staff as requested. 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.
Making treatment decisions
If your relative is seriously ill, he or she is probably needing to make decisions about which treatments to pursue. These are deeply personal choices. And they aren’t always easy.
The University of Ottawa has developed an interactive decision-making guide for evaluating options. It helps you compare the alternatives, apples with apples, by:
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- Gathering information into one document. Note as much as you can about each treatment: What are the benefits/advantages? What are the risks/disadvantages? Are there any side effects? What will “success” look like? (“How good does it get?”) How likely is that outcome? Will your family member still be able to do the things that give him or her purpose? If a cure is questionable, and treatments are difficult, you might want to include the option of not seeking treatment. Your loved one 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. Palliative care may be the wisest choice.
- Applying personal values. For each 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. Looking at the number of stars for each option is very helpful in making a decision.
- Assessing the support system. Serious treatment decisions are often made in consultation with others: the doctor, a spouse, other family members. The decision tool helps highlight the role others play in the process.
- Identifying the next steps. As you work with the tool, it will become clear what’s missing. Maybe you need more information. Perhaps your relative wants to talk with others who have made the same choice.