Lungs&You
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Caring for Your Caregiver

As a person diagnosed with interstitial lung disease (ILD), sometimes it’s hard to remember that you’re not alone in facing your diagnosis. Chances are, your caregivers are also greatly affected by your diagnosis and what that means on a daily basis for you, for them, and for the future. And while your caregivers are doing what they can to manage your needs on a daily basis, studies tell us they often neglect their own.

Understanding Goes a Long Way

Recognizing the stresses your caregivers experience can make a big difference in improving their health and your relationship with them, which can translate into spending more enjoyable and meaningful time together.

Caregivers may neglect to see their healthcare provider, suffer from depression and feelings of isolation, and feel their independence and social lives are compromised. But there’s a lot you and your caregiver can do to combat these feelings, including: getting someone else to pitch in, appreciating and respecting one another, sharing meaningful experiences, living with purpose every day, and making sure your caregiver’s needs are met.

Helping Your Caregiver Avoid Burnout

It’s not always easy for a caregiver to ask for help. Fortunately, there are support groups rich in resources that can provide a healthy outlet, timely information, and valuable coping tools—all in a caring environment. Have your caregiver ask your healthcare provider for support groups near you or visit the many online forums available.

Top 5 Things Your Caregiver Needs to Thrive

1

Proper rest, sleep, and nutrition.

2

The time to do things they enjoy.

3

Experiences that have relevance and purpose.

4

A network of compassionate and supportive people.

5

Shared responsibilities.

What You and Your Caregiver Can Do Together

Sometimes the most difficult challenges can be the kind we don’t see, but experience internally. When it comes to managing the physical and emotional stress that can accompany a diagnosis of ILD, both the person living with ILD and the caregiver play important roles.

Open up communication

Sharing what you’re going through, listening to what the other is experiencing, and expressing gratitude for the time you spend together can be powerful catalysts for healing and building stronger bonds.

Connect

People with ILD and their caregivers are more likely to experience a greater sense of well-being when shared experiences are meaningful to both. Visiting family and friends, attending spiritual events, and even sharing good memories can promote a deeper sense of fulfillment.

Make important decisions now

According to The Conversation Project National Survey 2013, 90 percent of participants agreed that talking with their loved ones about end-of-life care is important, but only 27 percent had actually done so. Taking care of practical details such as property, finances, legal documents, and even the type of care you want in the future can be a tremendous relief for you, your family, and your caregivers.

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