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Here are answers to Frequently Asked Questions that may provide insight for you as a family
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2—Family Matters: Frequently Asked Questions
By Richard Knowles, PhD and Brian L Tiep, MD
Here are our answers to some frequently asked questions.
- What is COPD? Can this disease be controlled? What is the outcome? How does shortness of breath affect the person with COPD?
- How does COPD and shortness of breath affect the FAMILY of the person living with COPD?
- What can be done to help the person living with COPD?
- What can family members do to help the person living with COPD? How can the person with COPD be motivated?
- Why should I help my loved one who has COPD--didn't they bring this on themselves by years of smoking?
- Is there something we can do at home or while traveling in the car?
- What can we do when everyone is angry, upset, or in a panic?
- Where can I learn more?
What is COPD? Can this disease be controlled? What is the outcome?
It means that the person has a Chronic Obstructive Pulmonary (Lung) Disease. The key words are chronic and obstructive. Chronic means that it not curable, but it is certainly manageable. Obstructive means that it is hard to breathe though constricted air passages. This contributes to shortness of breath. COPD is a combination of emphysema, chronic bronchitis and even some asthma. This sounds like we are handing out more disease. In reality, this is a way of understanding and managing a disease with multiple components. It means that there are more opportunities to bring the illness under control. (Emphysema results from the destruction or enlargement of the alveolar sacs, tiny structures where air meets the blood in the lungs. Bronchitis is an irritation of the lining of the bronchial tubes which carry air to the lungs. Asthma causes difficulty breathing.)
It is important that the person with COPD have been given a correct diagnosis and has a doctor who fully understands the illness and its total impact upon the family as well as on the person living with COPD. Being short of breath and having the fear of not being able to catch one's breath can raise the tension within the family. There are many ways to relieve shortness of breath and to deal with the emotions surrounding the symptoms of COPD. When the person with COPD is able to understand and to manage the emotional issues as well as the physical symptoms, there will be less stress for the family. Such proven methods of self management can help bring emotional balance back to the family.
The person with COPD may ask such questions as:
- What is self-management?
- How can this help?
- What about my doctor? Will he still help me?
For answers, see online selections from Courage and Information.
How does COPD affect the family of the person living with COPD?
The impact of COPD on the family depends on many factors: the personality of the patient, of family members, and the family structure. COPD can create changes in the family structure, but these changes can be an opportunity for strengthening the family. Both patient and family may be sharing a ride on an emotional roller coaster. This is a dynamic process that is likely to change over time—without prior notice.
Watch for these emotional pitfalls: anxiety, depression, anger and a cycle of frustration that rapidly spreads across your entire family. How you and your loved one deals with this situation will determine the quality of life for everyone in your house. Some signs of these emotional pitfalls:
- sleeping in/ sleeping late;
- staying up all night;
- not eating; overeating;
- lack of communication; too much communication;
- not dressing, not grooming.
Recognize them for what they are—signs of needing help. Don't be judgemental, do be helpful. Be positive and supportive.
At some point you may need to get in touch with professional help—start with the doctor caring for the person with COPD; this doctor can best guide you to a referral to a mental health professional. You will want to find a problem-solving professional who will help you sort out these problems and help you find a solution. The ideal professional will know about COPD and chronic illness and have experience in family counselling as well as appropriate professional credentials.
What is the best way to care for a person with COPD?
Both patient and family need an effective approach to managing this disease. We have come up with an acronym for COPD that may help. COPD is: Co-Operation of Patient and Doctor. This implies disease control where the patient’s role is to do good daily management; the doctor’s role is to direct; and the family’s role is to provide support and encouragement. This is a truly co-operative effort! By this method, patients and their families can enjoy a more normal and fulfilling life in spite of this disease.
How does a family member provide support, while encouraging or enabling independence?
Functional and symptom relief come from an understanding of the disease process and the prescribed treatment by the doctor. Emotional relief and support comes from such understanding and empathy. You can learn about COPD and treatments for it, and you can help to educate your loved one who has COPD. You can help support your loved one in overcoming the barriers to activities that will improve their quality of life. Here are some simple suggestions to consider.
Difficulty breathing can often lead to fear and anxiety. You can remind your loved one to learn and use relaxation and pursed lips breathing techniques that can quickly restore calm.
Staying at home can be like a prison sentence. Thus, although it may be a struggle—physically and emotionally—to get out of the house, the result can be to feel better. Getting out for physical exercise, for a game of bridge, or even to meet with a psychologist, can bring a new lease on life. You can encourage and facilitate such outings.
The person with COPD may be lonely, anxious, or bored—they may need a few minutes of conversation more than any prescription. Although you probably can't be there every time your loved one needs to reach out and chat, you can encourage your loved one to have a long list of friends that form a network of support. Perhaps you can help arrange transportation so that your loved one is not stuck at home.
Why should I help my loved one who has COPD—didn't they bring this on themselves by years of smoking?
Blame, guilt, anger, and despair may be natural responses when a loved one is sick. We fear losing them and at the same time we may blame them for causing their own disease. These feelings need to be discussed openly and a way found to move past blame and guilt.
Some perspective on smoking may help. Smoking is not simply personal choice. It is heavily influenced by tobacco advertising and social pressure and smoking itself is an addiction that is one of the most powerful known to human kind. Smokers are as much victims as people making free choices. Not so long ago, more people smoked than not. Those who have quit have overcome major hurdles in detox and habit reshaping. Although most COPD is caused by smoking, it can also be caused by exposure to certain chemicals or be the result of an inherited lack of alpha-one antitrypsin, normally made by the body to help protect the lungs.
Finally, if you grew up in a home with smoking, and/or if you yourself smoked, you can find out if you have any COPD. Your doctor can get you a spirometry test which only requires you to breathe into a test device. The earlier COPD is detected, the sooner you can stop the damage and save your lungs. If you do smoke, you need to think about stopping for your own sake as well as for your family members.
What can be done in the home or automobile to improve COPD?
Maintain a healthy-air household. There should be no smoking, incense, perfumes, or paint fumes. The filters in heating and cooling systems must be changed on a regular basis—often monthly. During times when there is extensive use of heating and air conditioning, the resulting dry air should be humidified.
Don’t forget that the car is an enclosed environment that demands an even higher level of care. Avoid being out during high levels of air pollution.
What can we do when everyone is angry, upset, or in a panic?
Perhaps a better way to look at this is to avoid getting into that kind of situation. You should ask, "What can be done to keep the COPD from getting worse?"
There should be open and honest discussion of how to deal with the underlying illness as well as the emergencies that are likely to emerge frequently.
Set up a partnership and plan with the doctor to help prevent disease progression, avoid emergencies, and effectively avert exacerbations (a worsening of the disease) through early detection and a rapid action plan.
Thanks to Gary Paluba, Ph.D. of the HealthyResources Editorial Advisory Board for insights and specific examples for a family member to give support and encourage greater independence.
Where can I learn more?
- Use the resources including books, links to other sites—Family Matters: Resources.
- Read a book designed to support collaboration, Courage and Information.
- Please use all the resources here at Healthy Resources: COPD TODAY.