What can help you to cope with COPD?

In early-stage COPD, it is often possible to go about your life as usual, with just a few limitations. People normally only have trouble breathing during more strenuous physical activities at first. Many then start avoiding activities that could make them get out of breath, and change the way they do things in the household, at work and in their free time.

A lot of people only go to see a doctor when they start experiencing acute episodes of breathing difficulties, known as exacerbations or flare-ups. These can make you feel anxious or even panicky, especially if you don't know much about COPD. Over time, you can learn to identify what triggers your flare-ups and become more familiar with how your body responds. Then you can gradually start to make changes in your daily routine. Many people can stay active for a long time, even though some activities may take longer than before or require more planning.

As COPD progresses, people may start feeling out of breath all the time. It becomes increasingly difficult to perform everyday activities without help. Things like shopping, tying your shoes, or washing your hair can be too exhausting. It can even be hard to eat because you have to hold your breath when you swallow, and you're already short of breath as it is. Your muscles also start to shrink due to lack of exercise. All of these factors can lead to major weight loss in people with advanced COPD, which in turn can make the symptoms even worse. So it's a good idea to pay careful attention to your diet if you notice that you're starting to lose weight. Professional dietary advice can then be helpful.

People with advanced COPD often find it harder to concentrate, or they may become forgetful. But that may be due to other illnesses instead. Many people with COPD have trouble sleeping well at night and are often exhausted and tired.

Routine tasks have to be planned more carefully, and it becomes harder to be spontaneous. Long-term planning also becomes more difficult because what you're capable of doing on a given day will depend on how you feel then.

People with advanced COPD regularly need certain medications at first, and then oxygen therapy too later on. Many come to rely on the help of others eventually. Comprehensive nursing care also means a loss of privacy and intimacy, which is usually difficult to accept at first. That can affect your self-esteem, too.

There are various things you can do to help you cope with COPD. Some people benefit from making conscious changes to their lifestyle and daily routine, taking their body's needs into account. They make more detailed plans, keeping in mind that they can change their plans if their symptoms suddenly get worse.

Over time, many people learn how to ration their energy – for example, by taking their time or sitting down when doing everyday chores. Some actively focus on the things that are most important to them. If you used to be physically active in your free time, you can choose other activities that are less tiring. Some people do breathing and relaxation exercises, and have a lot of rests. Instead of going out to visit family and friends, they may use the phone or the internet to keep in touch.

As well as medication, your treatment plan may include doing regular exercises or low-intensity sports that are suited to your physical fitness. Many places offer group classes that focus on physical activities especially for people with COPD.

An action plan should describe the typical symptoms as well as things like when to change your medication dose or how you take it, and when to see a doctor or go to a hospital.

Some people with COPD find it helpful to have an action plan on hand explaining what they or their family can do if they have a flare-up with breathing difficulties. It is best to consult your doctor when writing up the plan.

Worsening symptoms are often an early warning sign of a flare-up with acute breathing difficulties. An action plan can help you to detect an approaching attack in time and react accordingly. For example, you can use breathing techniques like “pursed-lip breathing” or postures like the "tripod position" to make breathing easier and stop yourself from panicking.

Many people draw energy and motivation from family and friends, or from talking with other people who have COPD. It is important to maintain a sense of dignity despite being dependent on the help of others. This includes managing the disease on your own as much as possible, keeping your privacy, and following your own interests.

At first you may want to avoid talking about your disease and try to hide your symptoms. But that could make it difficult for your family, friends and coworkers to understand what you're going through.

Dealing with COPD also means eventually talking with somebody about the future – for example, with a doctor or someone close to you. That involves thinking about the end of life, too, because COPD is associated with a reduced life expectancy. You may want to write down any wishes related to future treatment options in an advance healthcare directive (in German: Patientenverfügung). Your doctor can help you with this. The German-language website published by the Federal Ministry of Justice and Consumer Protection has some useful information on these issues in Germany. They also provide links to free downloads of forms and a booklet.

A serious condition like COPD also affects your relationships with family, partners, friends and acquaintances. They see how your everyday life changes over time, and many will try to help and support you wherever they can. Most people with COPD feel that their family and friends are understanding, and appreciate their support. But even people who are close to you may not know much about the disease at first, so having good information is all the more important.

Healthy people may have trouble imagining what it's like to have to plan all your activities in advance and be ready to change plans depending on how you feel. This can sometimes be frustrating for you and them and cause tension between you.

If a family member or partner decides to take care of you, their life will also change. They will take on more responsibilities than they had before, including some new and unknown tasks. At first, this might only involve occasional assistance. But later, as breathing becomes increasingly difficult, nursing care can become more important.

These changes also affect a couple's relationship. Partners may feel more like caregivers at times. Sexuality usually changes because of the physical limitations, but some couples find new ways to be intimate. Sometimes one partner having a chronic condition can even deepen and strengthen a relationship.

Please note that some of the following information describes the situation in Germany specifically. You may find that things are different in other countries.

Taking care of someone with severe COPD can be time-consuming and physically and emotionally demanding. Some caregivers feel overwhelmed or wish they had more support. So it's important for them to make use of nursing and support services, and regularly take some time to regain their strength.

There are various options here, such as respite care allowance (Verhinderungspflege) or short-term nursing care (Kurzzeitpflege), which you can make use of for up to six or eight weeks in the German healthcare system. You can find further information (in German) about these nursing services on the website of the German Ministry of Health.

There are also various support groups for people with COPD and support groups for loved ones, as well as information centers for advice on COPD. Talking with other people in the same situation is a great help for many. It is often easier to find sympathy and support from those who are in similar circumstances.

If you wish to spend the last phase of your life at home, outpatient services can provide the necessary medical care. But it's important to talk with your loved ones about whether this will be possible and whether everyone involved could imagine doing it. In Germany, specialized outpatient palliative care services (spezialisierte ambulante Palliativversorgung, or SAPV) offer particularly intensive medical and nursing palliative care. Their aim is to maintain and enhance your self-determination and quality of life in the last phase of life, and to make it possible for you to spend the final part of your life at home. Many wish to do this.

Palliative care teams are made up of medical, psychological and nursing staff. In Germany, SAPV is covered by public health insurers and must be prescribed by a doctor. The services can be made use of at home or in a hospice, and can often be set up in advance when you are still in the hospital.

It is not always possible to have nursing care at home, and not everybody wants to be cared for by loved ones. Some people prefer to leave their physical care to professionals and feel more at ease in a medical setting with 24-hour services. This can be a great relief for their loved ones too. It allows more time for close contact and conversations during the last phase of life.

The right kind of inpatient nursing care is available in hospitals (palliative care units), hospices and nursing homes. Your doctors, the hospital’s social services and your health insurer or long-term nursing care insurer can help you choose a suitable facility and organize the financial side of things.

Palliative care units are special hospital wards where people who are terminally ill and have severe symptoms receive intensive care for several days or weeks. The goal there is to limit the symptoms of the disease and reduce associated problems. Unlike intensive care units, palliative care units do not focus on medical technology, but on care and attention.

A hospice is not a hospital, but a facility where people are accompanied and cared for during their final phase of life. Hospice teams are usually made up of a range of healthcare professionals, including medical, psychological and nursing staff. They generally work together with practice-based doctors.

Hospices make little use of medical technology, and don’t give treatment to prolong life at any price. Instead, they focus on the management of breathing problems and other symptoms. A lot of value is placed on providing compassionate care and attention. It is a good idea to apply for hospice care as early as possible because there are often waiting lists.

You will find further information and addresses (in German) on the website of the German Association for Hospice and Palliative Care (Deutscher Hospiz- und Palliativverband).