Living With And Caring For People
With Chronic Lung Disease

From the California Thoracic Society
American Lung Association of California

Sharing your life with somebody who has chronic breathing problems means that you both have special needs. This Fact Sheet is designed to help you gain greater insight into special issues related to chronic lung disease, as well as to ensure that you take care of yourself.

CHRONIC LUNG DISEASES: WHAT ARE THEY?

Lung diseases include two major types: obstructive and restrictive. Obstructive diseases obstruct the flow of air through the airways, and restrictive diseases restrict the lungs from expanding. Chronic obstructive pulmonary disease (COPD) is an example of obstructive airway disease that includes chronic bronchitis and emphysema.
 
People who have chronic bronchitis have lots of phlegm or sputum leading to coughing and shortness of breath.

Emphysema is caused by damaged airsacs that become overstretched and floppy. They narrow when you breathe out and trap air inside the chest. The trapped air makes the lungs bigger which pushes down on the main breathing muscle, the diaphragm, so you need to work harder for each breath. This causes shortness of breath or uncomfortable breathing.

There is also a disease of the pulmonary vascular bed, known as pulmonary vascular disease.

Asthma is another type of obstructive lung disease characterized by airway narrowing from muscle spasm around the outside, and swelling of the airway lining on the inside.

Chronic bronchitis and emphysema are chronic or ongoing, and are most commonly the result of smoking. Asthma can come and go and is often associated with a history of allergies or a family history of asthma. Asthma can become more chronic as one gets older. Some people have a combination of asthma, emphysema and chronic bronchitis, whereas others may have primarily only one of these problems.

Restrictive lung problems make the lungs smaller and more difficult to expand. Some of these disorders affect the lung tissue such as idiopathic pulmonary fibrosis, asbestosis, sarcoidosis, and scleroderma. Other restrictive lung problems are a result of neuromuscular diseases such as amyotrophic lateral sclerosis (Lou Gehrig's disease) or multiple sclerosis. Kyphoscoliosis (curvature of the spine) can also limit lung expansion. Common symptoms of restrictive lung problems include cough and shortness of breath.

LIVING WITH CHRONIC SHORTNESS OF BREATH

The most frequent complaint or symptom of chronic lung diseases is shortness of breath, especially with activities such as walking up stairs, bending over, showering or bathing. Being short of breath affects dressing, grooming, shopping and other activities outside of the home, exercise, intimacy, and socializing. The result can be a mixture of emotions.

Your loved one may feel guilty and angry over his/her inability to carry on family roles such as taking out the garbage, cooking, or visiting. Going certain places such as the theater or ball games is limited by the presence of stairs, carrying oxygen equipment, or an embarrassing cough. Even social events with lots of activity, eating, laughing and talking can be hard on breathing.

Anxiety is a common problem during episodes of breathlessness. Once shortness of breath begins, it can create anxiety that in turn can lead to more breathlessness. The result can be the avoidance of activities that lead to shortness of breath.

It is certainly understandable why one would want to avoid activities leading to the frightening sensation of not being able to get enough air. Over time you may notice that your family member gradually becomes less physically active, socially more isolated, and involved in fewer hobbies. Your family member may also lose weight and muscle as difficulty eating may increase calorie use.
Understanding the reasons behind such changes will help you as a caregiver. It is crucial that the patient replace activities that he/she can no longer do with new ones that are possible to do.


STRATEGIES TO HELP YOU COPE AS A CAREGIVER

There are steps you can take to ensure your ability to cope with the stresses and strain of being a caregiver. While many caregivers say they have become closer to the one they care for, others develop fatigue, resentment and anger as a result of giving so much for so long. The following are tips to help you stay in balance and care for yourself to lower the strain of caregiving.


GET EDUCATED:

Seek out resources in your community to understand the breathing problem that your loved one has. The local American Lung Association (1-800-LUNG USA) can refer you to local Better Breather groups or Pulmonary Rehabilitation programs. Most rehab programs include family or friends of the participant in their educational sessions. Many also include support groups for family and friends of the rehab participant
.
Find out he facts about lung disease and its treatment so that you have accurate information and do not have to depend totally on your loved one to educate you. The lung association can give you written information; there are also resource books available (see Reference listing at end).

Specific key areas for you to understand are:

a. correct use of inhalers, nebulizers and oxygen equipment

b. medication schedule and actions of each medication

c. pursed lip breathing and when to use it

d. strategies for the patient to conserve energy such as sitting for hobbies, arranging bathroom and kitchen to decrease reaching and bending, buying slip on shoes, using a long handled reacher

e. recommended exercise program

f. proper nutrition and use of supplements

g. signs of infection/worsening breathing

h. avoidance of irritants/asthma triggers


HAVE A WRITTEN PLAN FOR HANDLING ACUTE SHORTNESS OF BREATH:

Episodes of breathlessness are extremely frightening for the patient as well as the caregiver. Learn how to coach pursed lip breathing and relaxation exercises. Know what positions are best to use to relieve breathlessness.

The written plan should include:
what medications and how much can be taken,
exactly when to call the doctor,
phone numbers for physicians and important neighbors or family members that could help you in an emergency.

Early signs of worsening breathing include more frequent inhaler use, increased fatigue, decreased exercise, and change in color or increase in quantity of phlegm.


SHARE RESPONSIBILITY:

Make sure that the patient is as actively involved in his/her care as possible. This helps to maintain, as much as possible, shared responsibility and not give the entire burden to the caregiver. Allow the patient to make as many choices as possible remembering the frustration and anger that comes with being unable to do so many things.

TALK WITH FRIENDS/FAMILY:
It is helpful to be able to talk about your feelings to others, either family, friends or a counselor
.
GET ENOUGH REST:

Make your room comfortable for sleeping when you need it (dark curtains, etc). Daily exercise and keeping the same sleep schedule can help. Avoid caffeine (colas, chocolate, coffee), nicotine, and alcohol in the evening. If your caregiving routinely occurs during the night, try to arrange for a 'substitute' caregiver for one or two nights a week.

Try to nap at the same time every day. Remember, if sleep deprivation is an ongoing problem, you will be less capable of taking care of others as well as yourself. Irritability, mood changes, and memory problems can all result from sleep deprivation.

UTILIZE RESPITE CARE:

Respite care provides a rest for the caregiver. Either another caregiver can come into your home or, if possible, the patient can be taken to a day care center where they are given care by qualified personnel. Some sources of respite care include church groups, home health agencies and local agencies on the aging.

Reasons that some caregivers do not seek out help include:

> I don't need any help

> She/he can't get along without me

> If I say I want to get away from him for a while, he'll think I don't love him anymore

> Just because one is sick should not change the relationship between spouses or family members

These are all common and natural reactions- however, getting time away will make you a better caregiver and also gives a break to your family member.

The following is a list of additional ideas you may find helpful (adapted with permission from "Ideas for Caring for Yourself" by Judy Geller in the Well Spouse Mainstay newsletter, July/August 1998 issue)
.
1) Schedule time alone in a place that gives you peace every day.

2) Be gentle with yourself.

3) Attend a local support group for well spouses.

4) Use lists-to care for yourself-to care for your spouse. Post-its work great.

5) Exercise aerobically 20-30 minutes as often as possible. Lift weights three times a week

6) Develop a private space in the house just for you
.
7) Welcome your spiritual side. (Pray, commune with nature.)

8) Welcome counseling into your life. (Individual and marital counseling.)

9) Do loving things your mom did for you when you were a child. Warm your bed with a hot water bottle before bedtime. Make a cup of hot tea or hot chocolate. Take a bubble bath. Bake (or buy) your favorite cookies.

10) Don't sweat the small things. Focus on what is truly important to you.

11) Discover a hobby and schedule it into your life weekly. (Collecting paperweights, hiking, country line dancing, crafts, photography, iceskating, herb gardening, painting, pottery, jewelry making.)

12) Schedule a monthly lunch with a life-giving friend who isn't a well spouse
.
13) Stop. Breathe deeply five times.

14) Practice yoga or Tai-Chi.

15) Get a massage once a month. Touch is essential for life.

16) Buy yourself flowers once a month.

17) Turn off the TV.

18) Keep a journal. Share parts with a close friend or counselor.

19) Pay attention to your feelings, especially those of loss. Mourn the losses.

20) Nourish your being.

21) Listen to that quiet inner voice that says: "Enough," "I need to be alone right now," "I need rest." Give yourself the peace you crave, no matter how limited the amount of time.

22) Take advantage of formal and informal respite care services. Ask five relatives to take care of your spouse during ten weekends each year.

23) Schedule sleeping later than normal at least once a week.

24) Spend time alone with your children.

25) Read something positive and inspirational every day.

26) Beware of fusing or blending with your spouse and his/her illness.

27) Meditate between 10 and 30 minutes every day.

28) Read Maggie Strong's book Mainstay.

29) Remind yourself that progress is healthier than perfection.

30) Remember that you deserve a life, too.

31) Remember that no one else will take care of you except you.

32) Remember that you only go around once. Make choices that work for you, too.


DEVELOPED FOR THE CTS PULMONARY NURSING COMMITTEE
Prepared by Susan Jacobs, RN MS
Approved by CTS Executive Committee and © CTS 1999, revised 2007
CTS fact sheets are developed to inform the lay public on topics of lung health. They should not be considered a substitute for personal medical opinion from a health care provider.

                                                                   
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