Patient & Caregiver Support

Posted on March 07, 2019   |   
Author: Gretchen   |   
2 Comments   |   
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This blog post was written by Amy Leitman, Director of Policy & Advocacy

As a caregiver for a patient with a chronic illness, your role in helping your loved one manage his or her illness and treatment is a vitally important one. The illness takes a great toll on patients, but it is equally impactful on caregivers and family members in other ways.

Caring for a loved one with a serious illness like NTM lung disease or pseudomonas infection can cause great disruption to your life, as you help your loved one with treatments and the challenges of a changed lifestyle. Chronic illness often makes people feel like they have lost control, or that they are overwhelmed by the enormity of this undertaking. These feelings are normal, and neither caregiver nor patient should push them aside or disregard them. It helps for both of you to know as much as possible about the illness and treatments, so you can make decisions together.

It's important to address the emotional and physical issues you face, because each patient needs a strong support system, as does the caregiver, to be a strong support to the patient.

From specialists to primary care physicians to pharmacists and therapists, health care providers are often a valuable source of information needed to help with the ongoing long-term regimen needed to treat NTM lung disease, pseudomonas, bronchiectasis, and other related diseases. Caregivers, listen to your instincts and to your loved one as well. Listen and observe for anything out of the ordinary in case it needs to be reported to the doctor.

The Bronchiectasis & NTM Initiative, NTM Info & Researchand the COPD Foundationwebsites have several resources available to help patients, caregivers, and loved ones, and we encourage you to use them. Each of these websites have online forums where community members connect and interact.

Printed information is available through the NTM booklet, Insight: A Patient's Perspective. Additionally, the1, 2, 3's of Bronchiectasis can be accessed online.To obtain copies of the NTM booklet or to speak with someone at NTMir, call 305-667-6461, ext. 32, or email ntmmail@ntminfo.org. You can download or print a copy of the NTM booklet here. To access the Bronchiectasis booklet, click here for a downloadable PDF. You can also call the Bronchiectasis and NTM Information Line toll-free at 1-833-411-LUNG (5864).

And finally, make sure you reach out to others in your area for support. Being able to gather with others who are sharing experiences similar to yours, to speak and listen and exchange helpful tips, can be invaluable as you go through this journey of chronic You can find a list of support groups on ntminfo.org, and if you are interested in starting a support group in your area, we are happy to help.

2 Comments



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  • Support for caregivers is extremely important. Thank you Amy Leitman for providing resources and tips to both caregivers and patients.
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  • Yes, support means so much when one is dealing with a chronic disorder.- especially one that has a lot of ups and downs, good days and bad days. It is so important to reach out to the available supports currently available. As the old cliche, song goes” no man or woman is an island “.
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