For people living with COPD, a long-term lung disease, simple tasks like eating, taking a shower or carrying a conversation can become exhausting.
While treatments can help manage symptoms and slow progression, there is no cure. Many people live with COPD for years, but as the disease advances, it can bring overwhelming physical, emotional and practical challenges.
“Things like cooking, walking, even taking a deep breath can be very difficult,” says Kezia Ofosu Atta, director of advocacy for the American Lung Association in Michigan. “When you can’t do the day-to-day tasks you used to without any strain to your lungs, that can be disheartening.
“It affects your independence and places added responsibility on family caregivers. You can become isolated, especially if you don’t have support.”
Beyond shortness of breath, people with advanced COPD often experience intense fatigue, anxiety, sleep difficulties and frequent hospitalizations caused by flare-ups. Finding specialized support, not only for patients but also for the loved ones caring for them, can help manage symptoms, preserve relationships and enhance quality of life.
Ofosu Atta encourages people living with COPD and their caregivers to seek support early, whether through family, community organizations or health care professionals. She says the American Lung Association offers several resources, including a helpline, support groups and more.
“Building a support system is so important,” she says. “Know that you are not alone and there are resources that can help.”
For individuals with end-stage COPD, hospice can provide another layer of support. Danielle Heffron, Emmanuel Hospice’s quality manager and a registered nurse, says many families wait too long to call.
“A lot of people think you have to be bedbound with only weeks to live to be on hospice, but that’s often not the case,” Heffron says. “Hospice can be for someone that maybe still does get out of the house to do short trips. They are just a person who has a life-limiting illness who has chosen a path for themselves that doesn’t involve repeated trips to the hospital.”
Hospice teams can help manage COPD symptoms through medication, supplemental oxygen, breathing treatments and equipment among other support that is often fully covered and coordinated for patients and families, so they can focus on doing what matters most to them.
“We want to support patients’ ability to keep doing anything they desire to do and maximize what quality of life looks like to them,” Heffron says. “For many people, that’s staying in their home as long as possible. We can bring in equipment like portable oxygen, wheelchairs or hospital beds, along with medical support that improves comfort.”
Support for family caregivers is also available. In addition to coaching and education, Emmanuel Hospice offers in-home support, counseling, spiritual caregivers, supportive volunteers, social workers, respite care and a 24/7 phone line.
Because COPD often follows an unpredictable course, Heffron acknowledges it can be difficult to know when hospice is appropriate. She encourages families not to wait for a crisis before starting the conversation.
“If you’re finding it harder to do the things you once could, if you’re relying on more oxygen, if you’re going back to the hospital again and again or if you feel your comfort isn’t well managed, it’s time to ask questions,” she says. “Even if hospice isn’t the right fit today, we can help you understand your options and plan for what’s ahead.”
To learn more about COPD and find support, visit lung.org/copd. For information about hospice, visit EmmanuelHospice.org or call 616.719.0919.