For Caregivers & 
Loved Ones

If you are a caregiver for a patient living with NTM lung disease, you know firsthand how deeply you feel their struggle, especially related to health issues. Even caregivers who have medical training find navigating NTM challenging. Even if you are not the primary caregiver, you likely struggle alongside your loved one.

So what can you do in the face of an NTM diagnosis? Actually, a lot. Here’s how you can help your loved one:

  • Learn all you can about NTM lung disease symptoms and causes.
  • Serve as your family member’s advocate by attending appointments, and preparing questions to ask the physician based on your loved one’s concerns — and yours.
  • Record the information the doctor shares. Ask for summary notes, reports, and test results.
  • Understand what to do if you can’t reach the healthcare team during off hours.
  • Help administer medication and keep written track of symptoms/changes to discuss progress at medical appointments.
  • Encourage your loved one to stay as active as possible.
  • Engage with them in activities they enjoy, so everything doesn’t revolve around NTM.
  • Remind them that an NTM diagnosis can be overcome — and you’ll be with them every step, if you are able to.
  • Stay aware their mental and emotional well-being. Anxiety and depression go hand-in-hand with health concerns, but they can be more stubborn when dealing with chronic illnesses.
  • Create a safe space to allow your loved one to talk about anything. While it’s a natural response when someone is hurting, try to resist the urge to try to “fix” things. Don’t hesitate to ask for a referral to a mental health practitioner for both you and the person you are caring for.
  • If religion is an important part of your family’s life, reaching out to clergy or prayer groups can provide comfort.
NTM caregiver support noncontagious icon
Current data and research show that MAC is not contagious
(source: American Lung Association10)

Don’t forget yourself. While your support will be immeasurable to your loved ones, you can’t be of service if you neglect your well-being — physical, mental, and emotional. Healthcare advocacy often falls to one caregiver, so if possible, enlist the help of other family or community members.

NTM Research
NTM Resources