As an experienced hospice nurse with years of experience, I understand that coping with a loved one’s diagnosis of Chronic Obstructive Pulmonary Disease (COPD) can be overwhelming and challenging. In this article, we’ll explore what to expect throughout the disease, the changes you might notice in your loved one, and how to provide the best care and support from the onset until the end.
What is COPD?
COPD is a chronic lung disease that makes breathing difficult. It includes chronic bronchitis and emphysema. Over time, COPD can worsen and lead to serious health problems, affecting your loved one’s quality of life. Understanding the progression of the disease can help you better prepare for the journey ahead.
Chronic bronchitis is a type of COPD that causes inflammation and mucus in your airways. Your airways are the tubes that carry air to and from your lungs. When your airways are inflamed and filled with mucus, it is harder for air to pass through. This makes you cough a lot and feel short of breath. Chronic bronchitis is usually caused by smoking or exposure to air pollution. The best way to prevent or treat chronic bronchitis is to quit smoking and avoid polluted air.
Emphysema is another type of COPD that damages your alveoli. Your alveoli are tiny air sacs that exchange oxygen and carbon dioxide in your lungs. Carbon dioxide is a waste gas your body needs to eliminate. When your alveoli are damaged, they become less elastic and trap air inside. This makes your lungs bigger and less efficient. This also makes you feel short of breath and tired. Emphysema is also usually caused by smoking or exposure to air pollution. The best way to prevent or treat emphysema is to quit smoking and avoid polluted air.
How are chronic bronchitis and emphysema related?
Chronic bronchitis and emphysema are both types of COPD that affect your breathing. They have similar symptoms, such as coughing, wheezing, and shortness of breath. They also have similar causes, such as smoking and air pollution. They can also occur together, which means you can have both chronic bronchitis and emphysema at the same time.
Caring for a loved one with COPD requires patience, compassion, and understanding. Knowing what to expect can help you provide the best care and support throughout their journey.
Early Stages:
Your loved one may experience mild shortness of breath during physical activities.
They might have a persistent cough with mucus production.
Fatigue and weakness might be noticed.
Middle Stages:
Breathing difficulties will likely worsen, impacting daily activities.
Frequent respiratory infections may occur.
They may need supplemental oxygen for breathing support.
Severe shortness of breath, even at rest, is common.
Weight loss and muscle wasting may occur.
Increased vulnerability to infections and complications.
Significant fatigue and limited mobility.
End-of-Life Stage:
Your loved one may become less responsive or lucid.
Breathing may become very labored, with longer pauses between breaths.
They might prefer to sleep most of the time.
Providing comfort and alleviating symptoms is the primary focus.
Caring for Your Loved One with COPD
Ensuring the comfort and well-being of your loved one is paramount throughout their journey with COPD. Here are some tips for providing compassionate care:
Promote Healthy Living
A healthy diet can help your loved one feel better and fight infections. Give them foods that are high in protein, vitamins, and minerals. Avoid foods that are salty, spicy, or greasy. These foods can make them thirsty or cause gas.
Fluids can help your loved one stay hydrated and thin the mucus in their lungs. Give them water, juice, or milk. Avoid drinks that have caffeine, alcohol, or carbonation. These drinks can make them dehydrated or cause bloating.
Physical activity can help your loved one strengthen their muscles and improve their blood flow. It can also boost their mood and energy. Encourage them to do light exercises like walking, stretching, or yoga. Ask their doctor how much and what kind of exercise they can do.
Rest and sleep can help your loved one recover and relax. Ensure they sleep enough at night and take naps during the day. Help them find a comfortable position to sleep. You can use pillows, wedges, or recliners to prop them up. This can help them breathe easier and prevent swelling in their legs.
Medication Management
Medications can help your loved one control their symptoms and prevent complications. They may need to take pills, inhalers, or nebulizers. Follow the doctor’s instructions on how and when to give them their medications. Do not skip, change, or stop any medication without talking to the doctor first.
Keep a record of the medications your loved one takes. Write down each medication’s name, dose, schedule, and side effects. You can use a pillbox, a calendar, or an app to organize and remind you of their medications. Check the expiration dates and refill the prescriptions before they run out.
Store the medications in a safe and cool place. Keep them away from children, pets, and heat. Do not share the medications with anyone else. Dispose of the unused or expired medications properly. You can ask your pharmacist how to do this.
Breathing Support
Some people with COPD may need extra oxygen to help them breathe. This is called supplemental oxygen. The doctor will prescribe the amount and type of oxygen your loved one needs. You will also get an oxygen device, such as a tank, a concentrator, or a portable unit. Learn how to use, clean, and maintain the oxygen device. Follow the safety rules for using oxygen, such as keeping it away from fire, smoke, or heat.
Breathing techniques can help your loved one breathe better and save energy. One of the most common breathing techniques is pursed lip breathing. This is when you breathe in through your nose and breathe out slowly through your mouth with your lips pursed. This can help your loved one get more air out of their lungs and reduce the feeling of shortness of breath. Teach your loved one how to do pursed lip breathing and remind them to use it when they feel breathless.
A small fan can also help your loved one breathe easier. At the lowest setting, point the fan towards the left or right cheek. This can create a breeze stimulating the nerves on their face, making them feel less suffocated and more relaxed. Do not use a ceiling or room fan instead. These fans can dry out the air and make it harder to breathe.
Psychosocial Support
COPD can affect your loved one’s mental and emotional health. They may feel sad, angry, scared, or lonely. They may also lose interest in things they used to enjoy. You can help them cope with their feelings by being a good listener and offering emotional support. Let them know that you care about them and that they are not alone. Give them hugs, compliments, and encouragement.
Support groups can also help your loved one feel better and less isolated. Support groups are groups of people who have COPD or care for someone who has COPD. They can share their experiences, tips, and advice. They can also make new friends and have fun. You can help your loved one find and join a support group in your area or online. You can also join a support group and meet other caregivers who understand what you are going through.
Advance Care Planning
Advance care planning involves discussing their wishes for future medical care with your loved one. This can help them get the care they want and avoid the care they do not wish to. It can also help you and their doctors decide if they cannot speak for themselves.
An advance directive is a document that states your loved one’s wishes for their medical care. It can include a living will and a healthcare proxy. A living will is a document that says what kind of treatments your loved one wants or does not want if they have a life-threatening condition. A healthcare proxy is a person who can make medical decisions for your loved one if they cannot make them for themselves. You can help your loved one create an advance directive and choose a healthcare proxy. You can also ensure their doctors and family members know and respect their advance directive.
Comfort Measures
Comfort measures can help your loved one feel more comfortable and peaceful. They can include physical, emotional, and spiritual care. You can provide comfort measures for your loved one at any stage of their COPD, but especially when they are near the end of their life.
Physical comfort measures can include keeping the environment comfortable and peaceful. You can adjust the temperature, lighting, and noise level to suit your loved one’s preferences. You can also provide soft blankets, pillows, and a fan. You can help your loved one with hygiene, such as bathing, grooming, and dressing. You can also massage their hands, feet, or back to ease their pain and stiffness.
Emotional comfort measures can include spending time with your loved one and showing them your love and care. You can talk with them, read to them, play music for them, or watch their favorite shows with them. You can also help them say goodbye to their family and friends and express their gratitude and forgiveness. You can also respect their privacy and dignity and let them have some alone time.
Spiritual comfort measures can include helping your loved one connect with their faith or beliefs. You can pray with them, read from their holy book, or sing their hymns. You can help them find meaning and purpose and cope with their fears and doubts. You can also respect their cultural and religious traditions and rituals and help them fulfill them.
Communication
Communication is when you talk and listen to your loved one. It is important to communicate with your loved one throughout their journey with COPD. It can help you understand their needs, feelings, and wishes. It can also help you provide better care and support for them.
Use clear and straightforward language when talking with your loved one. Avoid using medical jargon or complex words that they may not understand. Explain their condition, treatment, and care plan in a way they can comprehend. Ask them if they have any questions or concerns, and answer them honestly and kindly.
Ensure they understand their condition, treatment, and care plan. Ask them to repeat what you said or to teach it back to you. This can help you check if they understood you correctly. Suppose they did not try to explain it again differently. You can also use pictures, diagrams, or models to help them visualize your words.
Plan for end-of-life care
As COPD progresses, it is essential to discuss your loved one’s wishes for end-of-life care and ensure their preferences are respected. The advance care planning tips above can help you with this conversation. You can also ask their doctor or a social worker to help you with this conversation. You can also use tools like the Conversation Project or the Five Wishes to guide you with this conversation.
Conclusion
Remember, you don’t have to go through this journey alone. Reach out to healthcare professionals, support groups, and organizations specializing in COPD to get the guidance and assistance you need to support your loved one in their pursuit of a good death.
