Understanding and Coping With Severe COPD
COPD is a chronic respiratory illness for which there is no cure and that will progress steadily over time. How much time can vary greatly. Often it will take years between the initial diagnosis of COPD and when a person reaches what is known as "end-stage COPD", also called Stage 4 or Severe COPD.
Understandably, there are many concerns and not a small amount of anxiety about this stage. You may be wondering what you will feel like, what to expect, what you should do and more. In this post, I'll provide a practical guide to help you understand this final stage and how to cope with it.
What is end-stage COPD?
End-stage COPD is defined as having forced expiratory volume of below 30 percent of normal, as measured by lung function testing. In other words, you're having severe breathing problems at least part of the time. You're also probably having more frequent COPD flares and respiratory infections than in the earlier stages.
Although it is the final stage of COPD, the end of life may or may not be near. You may not be able to recover from this stage, but you can live at this level for some time to come. Being diagnosed at this stage does not necessarily mean you are at the end of your life right then.
What does end stage COPD feel like?
Besides feeling more short of breath, even when at rest, you'll have trouble doing your daily activities, including getting dressed, bathing, walking around the house, and even eating. One thing you should not worry about, though, is that you're going to feel like you're suffocating. Your healthcare team can help you with a COPD management plan that will minimize that happening. You may also find that you are coughing more and bringing up more mucus.
Chances are, you'll be slowing down, perhaps even staying in bed most of the time. You may not feel much like eating or drinking fluids. You may become more dependent on supplemental oxygen. Your breathing problems may also being to interfere with sleep and rest. You may even develop a condition called sleep apnea, where you briefly stop breathing while asleep.
Also, as the lung function declines, your heart has to work harder just to get oxygen into your cells. This can put a strain on the heart and cause heart disease symptoms, including swelling and fluid in the ankles and feet.
Mentally, it is also common to experience sadness, anger, frustration and depression. This is a perfectly normal reaction to the limitations you are now coping with. It can also be a time for reflection and reminiscing about your life.
What you can do to manage end stage
Preserving the quality of your life and your comfort are the main goals at this stage in your COPD. It's important to work closely with your healthcare team to put together a treatment plan that helps you breathe as comfortably as possible and avoid serious complications.
You may need to be on a mix of medications that help your airways expand and relax. You may also need to be on antibiotics if you have an infection or heart medications. Most certainly, your doctor will prescribe supplemental oxygen if you haven't been on it before. If you're already on oxygen, your doctor may increase the flow rate.
You might also need to switch to a concentrator, rather than liquid or gaseous oxygen, if your flow rate goes high enough. With a concentrator that converts room air to oxygen, you won't need to worry about running out of oxygen or needing a refill.
If you're experiencing sleep apnea, you may need to go on a CPAP machine at bedtime that will make sure you keep breathing and that you're getting enough oxygen during sleep.
Be attentive to symptoms
Be sure to alert your doctor if your COPD symptoms spiral out of control, or if you have signs of infection, such as a fever or changes in your sputum. Be sure to stay up to date on your flu and pneumonia vaccines as well.
Make healthy food choices
Also, keep making the healthiest food choices you can and stay as active as possible. Don't give in to the bed until you have to! Even if you're only walking up and down the hall or from the couch to the bathroom, this will help keep your joints moving and your muscles from weakening more than necessary.
Be mindful of your mental help
If you're feeling anxious or depressed, it's OK to ask for help. Medication might be an option. So is counseling. Sometimes, just being able to vent about your feelings and talk about your fears with someone close to you may be enough.
Ask for help
Finally, don't be afraid to ask for help and to use your support network. There are going to be things you can no longer do for yourself. Allow your loved ones to help you. You both will benefit. It's also important not to isolate yourself, if you can help it. So, welcome short visits from friends, neighbors, people in your parish and family members.
How a caregiver can help you
Most people who reach end-stage COPD will need to depend on a caregiver at some point. Most often this is a spouse or one of your adult children. No matter how much they embrace caring for you, it can be a stressful and tiring job.
Caring.com offers a number of practical suggestions for caregivers of people who are in the final stages of COPD:
- Assist with complicated medication management
- Encourage proper use of supplemental oxygen
- Help you stay active
- Prepare for flare-ups and complications
- Assist with balancing activity with rest and sleep
- Promote optimal air quality
- Be a positive, supportive force
- Take good care of yourself!
Follow the link above to get more details and actions steps on each of these strategies.
Being told you are at the "end stage" of COPD doesn't mean death is right around the corner. But, eventually, you will know when the end is drawing near. This is a time when hospice might be helpful.
When you are ready for hospice, you agree not to seek further restorative treatment. Care is aimed simply at making you comfortable at home during your final weeks or months. Hospice can provide a number of support services, including home care aides, respite services for your caregiver and spiritual guidance. It is generally covered by insurance, particularly if you have Medicare.
Hospice doesn't mean you are giving up -- it simply means that you accept what is happening and that you are getting ready for the next steps.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to COPD?