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 shortness of breath, 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 and what you do. Many people can stay active, even though some activities may take longer than before or require more planning.

As COPD becomes more severe, 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 are 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 are starting to lose weight. It might also be worth seeking advice from a nutrition specialist.

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 start requiring more careful planning, and it becomes harder to be spontaneous. Long-term planning also becomes more difficult because what you are capable of doing on a given day will depend on how you feel then.

People with advanced COPD regularly need special medication at first, and oxygen therapy later on. Eventually, many of them will also often rely on the help of others. Comprehensive nursing care also means a loss of intimacy and privacy, which is usually difficult to accept at first. Self-esteem often suffers as well.

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 abandon their plans if their symptoms suddenly get worse.

You can learn how to ration your energy by taking your time or sitting down when doing everyday chores. It may help to actively focus on the things that are most important to you. Although strenuous physical exercise may no longer be possible, you can do 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 can include regular exercise or low-intensity sports that are suited to your physical fitness. Many places have groups that offer physical activities designed for people with COPD.

An action plan should describe the typical symptoms as well as things like when to change your medication dose or use, 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 acute breathing difficulties. It is best to consult your doctor when writing up the plan.

Worsening symptoms are often an early warning sign of acute severe breathing difficulties. An action plan can help you to detect an approaching attack in time and react accordingly. 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 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 coping with the condition on your own as much as possible, preserving your privacy, and pursuing your own interests.

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

Dealing with COPD also means eventually talking with somebody about the future. You might speak with a doctor or someone close to you. That also means thinking about the end of life because COPD lowers life expectancy. You may want to write down any wishes related to future therapy in an advance health care directive (in German: Patientenverfügung). Your doctor can help you with this. The German-language website published by the German Federal Ministry of Justice has some useful information on these issues in Germany. They also provide links to free downloads of forms and brochures.

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

Healthy people may have trouble imagining what it is like having to plan all your activities in advance and be ready to change plans depending on how you feel. This can be frustrating and cause tension in relationships.

If a family member or partner decides to take care of you, their life will also change a lot. 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 will 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 manage to find new ways to be intimate. Sometimes one partner having a chronic condition can even deepen and strengthen a relationship.

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

There are different options for finding relief, such as respite or short-term care, which is available for six or eight weeks in the German health care system. The German Federal Ministry of Health provides further information (in German) on these nursing services on their website.

There are also various support groups for people with COPD and support groups for family members, 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 amongst those who are in similar circumstances.

Nowadays, outpatient services can provide the necessary medical care if you wish to spend the last phase of your life at home. It is important to talk with your family 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 increase self-determination and quality of life in the last phase of life, and to make it possible for people to live the final part of their life at home. Many wish to do this. Palliative care teams are made up of medical, psychological and nursing staff. SAPV is offered by statutory health insurers and must be prescribed by a doctor. It is suitable for home or hospice care, 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 relatives. Some people prefer to leave their physical care to experts and feel better cared for in a medical setting with 24-hour services. This can be a great relief for family members too. It allows more time for close contact and conversations during the last phase of life.

Hospitals (palliative care units), hospices, and nursing homes all offer inpatient care. 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 of the therapy is to relieve or limit the symptoms of the disease – usually aiming to discharge the person home or to a hospice. 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 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 appropriate treatment of breathing problems and other symptoms. A lot of value is placed on providing compassionate care and attention. It is a good idea to register early for hospice care because there are often waiting lists.

The German Association for Hospice and Palliative Care (Deutscher Hospiz- und PalliativVerband) provides additional information and contact addresses on their website (in German).