COPD (chronic obstructive pulmonary disease) is a type of progressive lung damage that prevents the lungs from properly expanding, contracting, and bouncing back to their original shape. Patients with COPD may need greater assistance than before. For instance, they may need to carry oxygen or rest frequently when walking. Sudden extreme trouble breathing in later stages may also trigger an emergency. As the disease progresses, you’ll need to make some decisions about the type of long-term care that’s right for you. Keep reading for more information on the disease progression, long-term care services worth considering, ways to pay for care, legal considerations, and more.
COPD actually progresses in four stages, typically worsening slowly with occasional flare-ups.
Mild COPD/Stage 1
This is the early stage where people will continue with normal activity, only with a slightly increased ability to be out of breath. There may be a chronic cough and phlegm.
Moderate COPD/Stage 2
Symptoms increase, with more coughing and phlegm. It’s at this point many people go to the doctor with complaints of breathing problems.
Severe COPD/Stage 3
This is the stage where the chronic obstructive pulmonary disease has a sizable impact on the quality of life. The lungs continue to become less functional, and breathing becomes even more of a challenge. Daily tasks and favorite activities become difficult.
Very severe COPD/Stage 4
During this stage, the quality of life begins to be affected to a great degree. Stints of breathing problems can be life-threatening. Those affected may not be pulling enough oxygen from their normal breathing and oxygen therapy may be needed.
As the condition worsens, you can see that the person will need more and more assistance. Below our guide to long-term care for COPD will cover symptoms and care more in-depth.
Effects on patients and loved ones
COPD is usually caused by exposure to long-term irritants, most often cigarette smoke, though genetics can play a role. It manifests as several tangible symptoms of COPD:
- Trouble breathing, shortness of breath during movement especially
- A chronic cough and mucus production, with a feeling of having to clear the throat in the morning
- Chest tightness
- Swelling in the feet, ankles, and legs
- Weight loss through no effort of the individual
- Low or no energy
- Cyanosis, which is blueness in the lips or fingernail beds
- Frequent respiratory infections
People with COPD are at risk for other health issues, like lung disease, high blood pressure in lung arteries, and depression that can result from not being able to do the activities once enjoyed due to breathing problems.
COPD organizations and resources
Caring for a family member can be one of the most stressful experiences you’ll ever face. It’s painful to watch a family member not do the things they once did with ease. As your family member needs more and more care, you may feel like you must always be home with them in case of an emergency.
Soon you can feel isolated, or like you’re the only one in the world dealing with caregiver fatigue and other emotional problems that arise when caring for a loved one with chronic obstructive pulmonary disease.
But there are lots of organizations and non-profits that can offer support for you and your loved one. They are:
Alpha-1 Foundation: Alpha-1 Antitrypsin Deficiency is a rare condition that causes COPD in a minority of sufferers. If your family member is one of those folks, this group has clinical resources and other programs.
American Association for Respiratory Care (AARC): Works to help with care and advocacy for patients with respiratory issues.
American Lung Association: One of the largest help groups on the list, you can find a local chapter to connect with, as well as help with COPD treatment decisions. They also have support groups called the Better Breathers Club, open to both patients and caregivers.
American Thoracic Society: They offer education.
Caregiver Action Network: A great place for caregiving resources.
COPD-International: This community offers chat rooms, a library of medical information, and other support for caregivers.
The COPD Foundation: This nonprofit helps to expand care and help improve the lives of those living with COPD and their care providers. They have educational resources, events, and a digital community.
Family Caregiver Alliance: Here you’ll find advice and information on caregiving, as well as support groups.
Griefnet: Help for those who are suffering from grief, loss, and death.
Medicate Rights Center: This nonprofit organization helps people access affordable health care for the elderly and disabled. They offer counseling, advocacy, and education.
National Heart, Lung and Blood Institute (NIH): A government organization that works for awareness and education.
Second Wind Lung Transplant Association: When it gets to the point where a lung transplant may be the best solution, this group offers information and support on the process.
Today’s Caregiver Magazine: Offers information and community for family and professional caregivers.
Treatments and care needs
Above, our guide to long-term care for COPD covered how chronic obstructive pulmonary disease affects the lives of those who suffer from the condition and their family members. Below we’ll cover in more detail what types of individual care this condition requires.
With chronic obstructive pulmonary disease, you’re looking at a wide range of different treatment options. Perhaps the most noticeable is needing an oxygen tank for a steady supply of oxygen in the later stage.
Luckily, oxygen comes in far more portable options these days than the larger tanks of old. New oxygen tanks can fit right over the shoulder. Other options include liquid oxygen tanks or a concentrator, which is an electric device that collects oxygen right out of the air. Caregivers may need to help arrange access to these devices.
People with COPD may need to monitor medicines in the form of inhaled treatments or pills. Inhaled treatments come in the form of sprays or dry powders that are administered with a mouthpiece or an electric machine called a nebulizer. Family members who are older may need help remembering or administering these medications.
One of the best things someone with COPD can do is to stop smoking, if they do, as it’s one of the biggest causes of the condition. Your family member may need assistance in stopping in the form of emotional support. Second-hand smoke can make the problem worse, so you may want some cessation as well if you are a smoker. You may also want to attend support groups or counseling to assist with smoke cessation, as well as take advantage of nicotine products like gums and patches to quit.
The tricky part of caring for a loved one with chronic obstructive pulmonary disease is making sure they still get physical activity. It may be tempting to not risk being short of breath, but physical activity can actually overall help with breathing. Options include a pulmonary rehabilitation program, a home physical therapist to help with exercise at home, or a recommended physical activity from a doctor.
Here are some additional ways to help with caring for a loved one with COPD:
- Attend medical appointments with your loved one, ask questions, and take notes.
- Keep a system so meds, treatments, and appointments stay organized, like a calendar or alert system.
- Learn about the signs of a worsening condition or infection from your doctor. An episode of worsening COPD symptoms is called exacerbation and is accompanied by symptoms of COPD like excessive trouble breathing, more coughing than normal, and weakness. Learn when to get medical attention.
- Keep the home free of anything that someone could trip on or have trouble maneuvering around if the person has trouble getting around. Keep the home free of smoke and avoid other common respiratory irritants like heavy perfume or aerosol air fresheners.
- Keep an eye out for any mood or behavior changes in your loved one. Let the doctor know so that person can get intervention before the problems become more serious.
- Also, keep an eye out for your own mental well-being. If you feel overwhelmed with caring for someone with COPD, don’t be afraid to seek to counsel.
Sometimes, you need to work in addition to caring for a loved one with chronic obstructive pulmonary disease. That means you can’t always be around monitoring for attacks or attending doctor’s appointments. That’s when it’s time to look into finding care for your loved one. Below we’ll examine how to appropriately finance, protect and find that care.
Legal and financial options
Caring for a loved one with chronic obstructive pulmonary disease doesn’t stop with just the condition itself. When a loved one becomes ill, it opens up all sorts of questions regarding legal and financial matters. Will my loved one’s care preferences be honored? How can we get access to care funding? What will happen after my loved one passes?
There are certain aspects of legal proceedings to keep in mind, and there are ways to access the funding you may need, which our guide to long-term care for COPD will cover below.
Last will and testament
No one wants to think about their family members or themselves dying, but with a condition like chronic obstructive pulmonary disease that may steadily worsen and include life-threatening attacks, it’s something that should be addressed.
A last will outlines how your family members want their assets distributed.
Power of attorney
Should your loved one with COPD lose the ability to care for or make decisions for themselves at any time, the power of attorney allows you to conduct legal and financial decisions on their behalf. You designate this on a legal document, sometimes with a lawyer. Check with your state government on how to arrange power of attorney.
Advance health care directive
The advance health care directive is the specific instructions for the ongoing care of a loved one in the event that they are incapacitated and cannot make the choice on their own. It’s sometimes called a living will. It may cover:
- What types of treatments your loved one should undergo and to what extent they should be administered
- Who specifically gets to make these choices on the half of the loved one
- Medical conditions that doctors should be aware of
- How resuscitation should be handled and when life support should be ended
- Organ donation specifications
- Spiritual, cultural, or religious customs that may influence how treatment is administered
Paying for care
There may also come a time when you need to access long-term care for a loved one with chronic obstructive pulmonary disease. Paying for care may be difficult. There are many different ways to pay for COPD care:
Personal funds: If your loved one has access to savings, a retirement fund, or a pension, those funds may pay for part or all of the care.
Medicare: This is the federal government health insurance program that will cover some of the medical costs for those who are 65 years of age or older. It covers care like nursing home stays, doctor’s care, and some medications.
Medicaid: This is the combined state and federal program that can assist with medical costs for people who have low income. Eligibility and care vary from state to state, but don’t worry — We’ve got a guide to Medicaid planning to get you started.
Social Security Disability: If your loved one is under 65 years of age, they may qualify for disability benefits.
Program of All-Inclusive Care for the Elderly (PACE): This program is in some states. It provides care for people who would otherwise need nursing home care.
State assistance: The State Health Insurance Assistance Program (SHIP) provides counseling and help to people navigating Medicare.
Resources for finding assistance
BenefitsCheckUp: This is a tool from the National Council on Aging that helps families find and access federal and state benefits.
Benefits.gov: Here you can also learn more about federal, state and local benefits that may be available.
Long-term care for COPD
It may come to the point where your loved one could greatly benefit from long-term care, and our guide to long-term care for chronic obstructive pulmonary disease can help.
Choosing long-term care for your loved one with chronic obstructive pulmonary disease is one of the most important decisions you’ll make as a family. The care option should be the right choice for the level of care your loved one needs, but it should also be something that will help them live the highest quality life they can.
Luckily, you don’t have to make such an important decision alone. You can talk to your doctor, your other health care providers, a social worker, other members of the family or what’s called a person-centered counselor. These people may be able to recommend places or help you come up with additional points to keep in mind while looking.
When talking to the care facility or service, it’s important to discuss with the care manager the specific condition, COPD symptoms, and outlook for your loved one.
Questions to ask long-term care providers include:
- What is your experience caring for someone with COPD?
- Do you have a care plan in place for those with COPD?
- What are your procedures in case of an emergency?
- What is your care plan and pricing for when more services are needed for worsening chronic obstructive pulmonary disease?
You should also tour the facility. Look at the activities offered, what the food is like, and other important factors. You may consider visiting a few times, including during the weekends or evenings to see what it’s like at those times.
The AARP has a great checklist that you should fill out when touring facilities.
Keep in mind, you also have a lot of options these days for care in addition to nursing homes: home care, subsidized senior housing, residential care communities, assisted living facilities, hospice and respite, PACE, an Accessory Dwelling Unit (ADU) and community-based care like day programs.
Finding the right senior care providers
One of the biggest factors in how your loved one with COPD will maintain their quality of life is making sure they have a great chronic obstructive pulmonary disease care team.
The COPD care team may include:
Primary care doctor: The doctor’s diagnosis of COPD cases and provide treatment in the early, less complicated stages. They may prescribe medication to control symptoms of COPD and slow the progress of the lung disease.
Pulmonologist: These are specialists that treat lung diseases. If people don’t respond to treatment or the case is more advanced, that’s when these doctors are brought in.
Pulmonary rehabilitation specialists: These are professionals that help people live better with the symptoms of chronic obstructive pulmonary disease, like shortness of breath and cough. This is another team in and of itself, as it can include physical therapists, respiratory care specialists, nurses, dietitians, and exercise specialists. These programs are aimed at keeping people active and healthy.
Mental health providers: COPD is very stressful to live with, as it can include problems sleeping, sudden attacks, loss of breath, and trouble doing what the person once enjoyed. A mental health provider may need to treat depression, anxiety, or other mental health problems that can pop up in relation to COPD.
And that’s also not taking into account the nurses that may provide home care, surgical specialists if a transplant is needed and pharmacy staff who help with medications.
Treating this disease really is a team endeavor, so it’s important you find the right care providers. Unfortunately, there’s no master list of the world’s most perfect doctors.
Ask for recommendations of doctors from people you know. A current primary care provider can also give recommendations for specialists. You can find out more about finding a good doctor at healthfinder.gov.
Caring for a loved one with COPD is a complicated task. You’re still bound to have lots of questions about this complicated condition that can affect all aspects of life in the later stages. Take a look at our guide to long-term care for COPD FAQs below for further help.
1. What are the main causes of COPD?
COPD is typically caused by something that irritates the lung function over a long period of time. Most of COPD cases are caused by smoking cigarettes. Other chronic obstructive pulmonary disease causes include fire smoke, dust, or chemical fumes. There are also people who have inherited genes that put them at higher risk factors for the condition, smoking or not. Another cause could be early lung infections and other problems that hinder normal lung function as a child.
2. I heard the flu, colds and respiratory infections can cause COPD complications. What can I do?
The flu can lead to complications like pneumonia. These complications can be a problem for people with COPD because the lung damage compounded by the infection can lead to death.
Make sure to get your loved one vaccinated against the flu and common types of bacteria that cause pneumonia.
3. How does COPD relate to other lung conditions like chronic bronchitis that I hear mentioned a lot?
Chronic obstructive pulmonary disease is actually an umbrella term to designate shortness of breath or damage that can occur from primary conditions, like chronic bronchitis, asthma, emphysema or a combination of these conditions. COPD also covers the emphysema caused by Alpha-1 Antitrypsin Deficiency, an inherited form of protein deficiency that causes a small number of COPD cases.
4. What is the overall outlook for someone with COPD? Are worse symptoms unavoidable?
COPD is considered a progressive disease. What that means is that symptoms do get worse over time. A person with chronic obstructive pulmonary disease can still prevent worsening symptoms by stopping smoking if either of you smokes and getting vaccinated against pneumonia and the flu.
5. The worst thing about this disease is the unpredictability of flare-ups. How do we prevent these?
A flare-up, or exacerbation, happens when symptoms get worse. These can even cause a trip to the hospital if serious enough. Symptoms to watch out for include: increased wheezing or breathlessness, increased coughing, more mucus, losing sleep or appetite, little energy, or taking more medication to help with breathing than normal.
Triggers can cause a flare-up. Things to avoid include smoke and air pollution like dust or smog. Infections like the cold or flu can cause a flare-up.
Work with your doctor to make an action plan for when these flare-ups happen. Such action plans may include what medications to take during a flare-up or dose changes, instructions like resting and drinking fluids, and which medical professionals to call when this happens.
You may also want to avoid known triggers like smoke. Again, get vaccinated against the flu and pneumonia. Do not miss medication doses.
Other times, there may be no known causes. It just happens. Sometimes they cannot be avoided, so it’s best to be prepared. Talk to your doctor about what meds you should always keep on hand for when there is a flare-up.
Have a document listing all the information you’ll need in case of a hospital visit, like family contacts, doctor numbers, and medical information, like current medications. You may also want a bag packed in case of hospital stays.
6. My loved one seems frustrated and out-of-sorts. But they’ve expressed that they don’t trust “shrinks.” What can we do?
You can never force a family member to do what they don’t want to do. But you may want to gently encourage them to get assistance with how they’re feeling. Explain that it may help them to have someone outside of the family to talk to and help them with coping strategies.
You might also want to consider a support group for people with COPD. People who don’t like the idea of sitting alone in a doctor’s office talking about their feelings may open up more if they feel like they are in a more laid-back social group full of people going through the same thing. That can also combat feelings of loneliness. You can find support groups here.
7. My family member is going in to be tested for COPD. What can we expect?
The doctor will use a number of ways to test for COPD. That may include a chest X-ray, blood work to measure oxygen levels in the blood, a blood test to check for Alpha-1, breathing tests that require blowing into a machine and testing to measure how the body reacts while exercising. For instance, the doctor may see how far the person can walk in a certain period of time.
8. I’m afraid my loved one will need surgery for COPD. What kinds of surgeries are out there?
The most common surgery related to COPD that’s mentioned is a lung transplant, so that can make a lot of family members worried it will come to that. Another surgery called lung volume reduction surgery removes just the damaged lung tissue to help the rest of the lungs work more optimally. This is sometimes a viable option for a small number of COPD patients.
9. How dangerous are lung transplants and how do I know if it’s a good option for my loved one?
If your loved one is at the point where symptoms of COPD are severely impacting their quality of life and treatments like medications are no longer working, you may want to discuss a lung transplant with the doctor. The doctor can tell you whether your family member is healthy enough for surgery.
There are also a limited amount of organs available for transplant. And then after the surgery, the patient must take medications to reduce the risk factors of their body rejecting the transplant.
10. We need to travel with an oxygen tank. Is it possible to fly, and what else should we keep in mind?
If you need to travel with a loved one who has COPD, talk to the doctor. Someone with COPD who does not usually use oxygen may benefit from it on an airplane. Also, make sure you have enough medications and take them on the carry-on in case the airline loses your luggage. Let the airline know you’ll have oxygen if you are bringing it, and remember to arrange for how you’ll access oxygen at your destination, if necessary. You can learn more about traveling with breathing problems here.
11. My loved one with COPD feels worse when they exercise or move a lot. How can that possibly help?
Keeping up with exercise, in the long run, will help your loved one’s lungs stay stronger and work more optimally than they would with no exercise. Think of the old mantra, “If you don’t use it, you’ll lose it.”
Make sure your loved one is working closely with an exercise specialist so that they are working out at an intensity level and doing a type of exercise that is both benefiting them and not too harsh.
12. What types of exercises can my loved one do with COPD?
Talk to the care providers in depth about exercise programs. They will know what types of programs will be good for your loved one with their stage of COPD, which can be similar to typical fitness programs. There’s usually an aerobic portion, a strength training portion, and a stretching portion.
13. My loved one is having more and more trouble sleeping due to COPD breathing issues, and it’s affecting their quality of life. Is there anything I can do?
Talk to the doctor about it together. They may have treatment options that can help aid sleep.
Also, look into sleep arrangements like adjustable beds. Raising the head can help make breathing easier.
Sleep apnea is also a common disorder that goes along with COPD. It’s where breathing actually stops for brief periods while the person is asleep. It can lead to decreased sleep quality and nighttime waking. It may also be something to discuss with a doctor.
Certain COPD patient medications may also cause sleeplessness, so that is another point to review with a doctor.