Caring for Someone with Interstitial Lung Disease | Part 2

Chad Birt

Written by Chad Birt on Fri Mar 18 2022.

Caring for Someone with Interstitial Lung Disease | Part 2

In part one of our series on interstitial lung disease (ILDs), we highlighted the different types, discussed their symptoms, and explained some of the options for treatment. In part two, we’re sharpening our focus on caregivers. With that in mind, let’s take a closer look at some things to consider as you adjust to your new responsibilities.

Step one: Research your loved one’s diagnosis.

Caring for someone with ILD is different than caring for someone with diabetes or multiple sclerosis. Certain symptoms and responsibilities might overlap, but no two medical conditions are exactly alike. As a result, it’s imperative you do some research to know what to expect.

“Family caregivers will want to familiarize themselves with the challenges of living with interstitial lung disease,” said Sean Marchese, MS, RN, a registered nurse at The Mesothelioma Center, with more than15 years of direct patient care experience.

“For example, shortness of breath can limit physical activity and cause exhaustion after talking or conversation. ILD can also cause decreased oxygen, leading to dizziness, vision changes, or confusion. These symptoms may cause unsteadiness and potentially lead to a fall.”

After your loved one receives a diagnosis, make time to meet with their primary care provider and the team of care specialists. This is especially important if your recipient has a neurodegenerative condition, like dementia, that prevents them from advocating for themselves.

Some important questions you’ll want to ask include:

  • What caused the ILD? 

  • How severe is the disease?

  • Will my loved one’s disease get worse?

  • Are there any treatment options that can help slow its progression?

  • How can I tell if the disease is getting worse?

  • Will my care recipient need oxygen?

Bring a piece of paper and a writing utensil so you can take notes, or record the conversation with your smartphone or a tape recorder.

Step two: Understand that things will change.

Living with interstitial lung disease is challenging for everyone, but it can be especially so for people who used to play sports, run, or enjoy other types of exercise. 

If your loved one can’t get enough oxygen, even simple activities like climbing a flight of stairs or having a conversation can be exhausting. “This type of illness prohibits many activities and can decrease the quality of life,” said Marchese. “Help your care recipient find joy in activities that are fun and less strenuous.” 

That said, don’t let your loved one’s diagnosis keep them shut-in. Over time, pulmonary rehabilitation may be able to strengthen their lungs and reduce uncomfortable symptoms. If your care recipient has a type of ILD that’s chronic or degenerative, a wheelchair is an excellent investment. That way, they can still join you on errands, outings, and other social events.

Step three: Support your loved one’s respiratory health.

People with interstitial lung disease are incredibly sensitive to airborne particles like pollen, dust, dander, and smoke. Therefore, it’s important to create an environment that’s as clean and free of respiratory irritants as possible.

“If you’re caring for a loved one at home with interstitial lung disease, be sure that you do not smoke around them, as smoking can make the symptoms of the disease worse,” said  Raymond Dacillo, Director of Operations for C-Care Health Services in Toronto, Ontario. 

“Family members can also help [their loved ones by making] an exercise plan for them and [making] sure that they are taking their medicine(s) on time. They can also help by scheduling seasonal vaccinations to prevent the chances of them catching the flu or pneumonia.”

Other steps that you can take at home to improve air quality include:

  • Keeping the rooms well ventilated

  • Using allergy-free cleaning products and detergent

  • Fixing leaks and/or water damage

  • Using a dehumidifier (if you live in a humid climate)

  • Using a humidifier (if you live in a dry climate) 

Step 4: Join A Support Group.

Caring for someone with interstitial lung disease takes a lot of time and effort. If you feel burnt out, overwhelmed, or consumed with worry, joining a support group can improve your coping skills and help you build a caregiving community. 

“There are a variety of support groups for family caregivers of people with ILD,” said Dacillo. “Including:

For convenience, many of these organizations host their support groups online.”

Step 5: Stock up on the necessary caregiving supplies.

Interstitial lung disease increases the risk of various issues, including slip and fall accidents, coughing, wheezing, and shortness of breath. Make sure you have everything your loved one needs to breathe clearly. Here at Carewell, we carry various items that can improve your care recipient’s quality of life, including:

We also carry a variety of wall grab bars, shower bars, and shower chairs to support mobility and reduce the risk of a fall.

Caring for someone with interstitial lung disease isn’t always easy, but it can be done. By following these tips and tricks, you can minimize flare-ups, reduce the risk of complications, and help slow the progression of the disease.

Related reading: Caring for Someone with Interstitial Lung Disease | Part 1

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Chad Birt
Chad Birt

Chad Birt is a freelance medical writer who resides in Astoria, Oregon. When he isn't behind a keyboard, you can find him hiking, camping, or birdwatching with his wife Ella and their two dogs, Diane and Thoreau.