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Written by Todd Neff on behalf of National Jewish Health

Supporting a loved one with interstitial lung disease (ILD) and the pulmonary fibrosis (scarring) it causes is a true labor of love. It’s also a job most caregivers take on without formal training. Katherine Rosen, RN, MSN, ANP-C, a nurse practitioner at the National Jewish Health Center for Interstitial Lung Disease in Denver, Colorado, has much experience working with patients with ILD – and with their caregivers. She leads an ILD/pulmonary fibrosis caregiver support group at National Jewish Health. Here are a few of her insights on caring for someone with ILD.

Determine Who the Caregivers Will Be 

Rosen is deliberate about that “s” after “caregiver.” Yes, there will be a primary caregiver. But it takes a team to support someone with ILD. That secondary support can be as simple as being available to help move something heavy or to step in when the primary caregiver – often a spouse – needs a break. “I think it’s really important for that spouse to have their own team,” Rosen says.

Know What Symptoms to Look For 

Lung disease leaves patients short of breath. Some days are worse than others. Often, because the patient has felt bad gradually over time, they don’t recognize when their ILD is getting worse. Rosen says it’s important for caregivers to recognize if their loved one is having a consistently harder time breathing in general or with activity that wasn’t a problem before. Chest pain is a warning sign, because those with ILD are at higher risk of pulmonary embolism and pneumonia. Caregivers should also take note of weight loss and diminished appetite, which can be signs of worsening disease.

Caregivers should also keep an eye out for things like fatigue, depression and anxiety, as well as other ways that ILD can impact the patient’s life.

“It’s okay if the loved one has those symptoms. Just let there be a safe space where they can talk about it, and, if necessary, seek out support groups or medical care,” said Rosen.

Advocate for an ILD Specialist

There are roughly 200 types of ILD. The earlier a specific ILD is diagnosed, the better off the patient will be. Different forms of ILD respond to different medications that can vastly improve a patient’s prospects. Early, accurate diagnosis is important. In addition to establishing a diagnosis, ILD specialists understand that ILD patients can have other medical problems and can refer them to appropriate specialists.

Learn as Much as You Can 

“The more knowledge the caregiver can get about the lung disease, the better they’re going to be able to advocate for their loved one,” said Rosen.

That knowledge extends to managing medications – and expectations about what those medications can do. Medications for ILD often do a good job of extending lives and slowing progression. But unlike a medication such as an antibiotic, they don’t necessarily make you feel better. Over time, of course, slowing progression means you’ll feel better than you otherwise would have. It’s important that caregivers help their loved ones understand that.

“The intent is to keep you from feeling worse and your disease from progressing,” she explained.

Learning the ins and outs of supplemental oxygen is another key role of caregivers. “Oxygen is a drug, and it’s one of the most powerful things we can give people with ILD.”

Be Ready During Doctor Visits 

There’s a lot for an ILD patient to process. Before a visit, Rosen suggests caregivers write down questions the patient would like to ask. During the visit, caregivers can make sure their loved one understands the care path, what to do and what not to do. Caregivers also should make sure their loved one’s concerns are being addressed.

“Patients need to know that they’re being heard and they’re being listened to, and that there’s a plan,” said Rosen. “They should feel respected and engaged by their provider, and that they’re being cared for by an entire team.” Otherwise, she adds, “it’s always okay to get a second opinion.”

Encourage Exercise

The maxim “exercise is medicine” applies doubly to those with ILD. When we feel short of breath, we tend to want to move less. As a result, ILD patients can get physically weaker. That opens the door to worsening disease and other health problems. Exercise doesn’t have to be strenuous – walking is enough. Going on walks together can be good for caregiver and patient alike, explains Rosen, “because it’s actually a good way for that caregiver to take care of themselves as well.”

Advocate for Your Loved One in the Community

Patients with ILD can be self-conscious about using oxygen when out and about – and, particularly, about coughing in public. One patient Rosen worked with handed out business cards that read, “My cough is not contagious and it’s not going to make you sick.”

“I was struck by how funny and clever that was,” Rosen said. “It’s also very sad that you’re having to apologize for a symptom.”

Caregivers can help shield patients from unjust public scrutiny and offer solace should it happen.

“They become staunch advocates not just for their loved one, but I also see a lot of caregivers in our program become advocates for awareness of ILD and pulmonary fibrosis,” said Rosen.

Optimize Now – and Plan for the Future

There will be things your loved one can no longer do, and those activities will evolve over time. Match expectations with reality. Think about what you and your loved one can do to improve their quality of life within the bounds of the possible. Household roles can change. For example, if your loved one did the taxes and handled finances, they may not be able to handle those at some point. Take steps now to learn how to fill that role.

Also, Rosen says, keep those close to you up to date on your loved one’s health status.

“I think, too often, people say, ‘Oh, we don’t want to bother or worry our children,’” said Rosen. “But I think it’s really important to let kids know, early on, ‘Hey, this is happening.’”

Care for Yourself, Too 

Caregiving for a loved one with ILD is a tough job, and you can’t clock out. Sometimes it’s hard to know just what to do. Two good information resources are the Pulmonary Fibrosis Foundation’s caregiver pages, as well as the Family Caregiver Alliance, which offers more general tips for caregivers.

Taking care of yourself also means getting enough sleep, getting enough exercise and eating right. If you have chronic health issues, stay on top of them. And don’t be afraid to reach out to those you’ve tapped as part of the caregiving team for a break when you need it.

“It doesn’t mean that they love this person any less,” said Rosen. “It’s okay to ask friends and family for help, or for a break, or to share their feeling if they’re frustrated or anxious or scared or overwhelmed – those are all normal feelings.”
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